Understanding the Impact on Informal Caregivers for Parkinsons Disease Cross-Culturally A Literature Review A Clinical Dissertation Submitted to the Faculty of the Clinical PsychologyProgram in Partial Fulfillment of the Requirements for theDoctor of Psychology Degree Midwestern UniversityCollege of Health SciencesClinical Psychology Program by Mary F

Understanding the Impact on Informal Caregivers for Parkinsons Disease Cross-Culturally A Literature Review A Clinical Dissertation Submitted to the Faculty of the Clinical PsychologyProgram in Partial Fulfillment of the Requirements for theDoctor of Psychology Degree Midwestern UniversityCollege of Health SciencesClinical Psychology Program by Mary F. Rizzo, M.A. Downers Grove, IllinoisINSERT DATE Approval Page Understanding the Impact on Informal Caregivers for Parkinsons Disease Cross-Culturally A Literature Review By Mary F. Rizzo, M.A. A Dissertation Approved on INSERT DATE By the following Dissertation Committee Michelle M. Lee, Ph.D., ABPP Dissertation ChairRichard C. Ney, Ph.D., ABPP Committee MemberLauren Friedrich, Psy.D. Committee MemberAcknowledgement I would like to thank Dr. Michelle Lee for her guidance and support in making this dissertation a success. I also appreciate the support of my committee member, Dr. Lauren Friedrich, in providing an immense amount of suggestions throughout the dissertation process. In addition, I would like to thank Dr. Richard Ney for expanding my knowledge throughout the years and providing genuine and thoughtful encouragement. My dissertation committee enhanced my skills of research and graduate school writing in a tremendous way. I would also like to thank my family and friends for their support and patience throughout the writing process. I could not express enough gratitude regarding the support and care I received. Table of Contents TOC o 1-3 List of Appendices viii List of Tables x List of Figures xi Abstract xii Chapter I Introduction 1 Etiological Theories of PD 3 Symptoms of PD 5 Physical symptoms of PD 5 Emotional symptoms of PD 6 Cognitive symptoms of PD 7 Behavioral other symptoms of PD 9 Progression of PD Symptoms Over Time 10 Major or Mild Neurcognitive Disorder due to PD 11 PD Dementia Compared to Lewy Body Dementia 12 Level of Severity of PD 14 Diagnostic Assessment of PD 15 Treatment Modalities for PD 17 Informal Caregiving in General 20 Characteristics of Informal Caregivers 21 Informal Caregiver Stressors 23 Psychological stressors 24 Physical stressors 25 Financial stressors 26 Positive Aspects of being an Informal Caregiver 27 Informal Caregiving in PD in General 29 Informal Caregiver Responsibilities for PD 30 Negative Effects of Informal Caregiving in PD 31 Physical consequences 31 Psychological consequences 32 Social consequences 33 Informal Caregivers of PD Needs 33 Importance of Multicultural Competence 37 Multicultural Competence in Older Adults 41 Importance of Multicultural Competence as it Relates to Informal Caregivers of PD 44 Cross Cultural Psychology of Aging 44 Informal Caregiver Dynamics within Specific Cultures 47 Past Research of Informal Caregivers of AD and Multicultural Competence 50 Rationale and Purpose for Current Study 53 Research Questions 56 Chapter II Methods 58 Organization of Studies 60 Chapter III Results 62 Research Question 1 What factors contribute to informal CB with PD across various countries reviewed a. What shared factors appear to contribute to informal CB with PD across various countries reviewed b. What unique factors appear to contribute to informal CB with PD across various countries reviewed 63 Factors that Contribute to Informal CB with PD across Countries 63 Shared Factors that Contribute to Informal CB with PD across Countries 63 Disease duration of PD 63 Level of behavioral symptoms and cognitive dysfunction of PD 67 Level of severity of PD 72 Duration of informal caregiving for PD 76 Mood State of Informal Caregiver for PD 77 Unique Factors that Contribute to CB with PD across Countries 79 Sleep disturbance of PD Patients 79 Financial concerns of informal caregivers for PD. 80 Lack of social support of informal caregivers for PD 80 Research Question 2 Does informal CB impact the QoL of informal caregivers for individuals with PD across countries reviewed a. Which countries appear to have shared factors of CB with PD impacting QoL b. Which countries appear to have unique factors of CB with PD impacting QoL 81 CB Impacts the QoL of Informal Caregivers of PD across Countries 81 Shared Factors of CB Impacting QoL across Countries 81 Depression of informal caregivers for PD 81 Disease severity of PD 84 Mobility impairment of PD 86 Unique Factors of CB with PD Impacting QoL across Countries 88 Functional dependency of PD patient 88 Psychological dysfunction of PD. 89 Behavioral problems of PD related to executive functioning 89 Health-Related QoL of PD patient 89 Duration of informal caregiving for PD 90 Research Question 3 Does the severity of a patients symptoms of PD (i.e., depression, psychosis, executive functioning, and physical impairment) impact informal CB across countries reviewed Which countries appear to have shared factors of CB impacted by the severity of a patients symptoms of PD Which countries appear to have unique factors of CB impacted by the severity of a patients symptoms of PD 92 Severity of a PD Patients Symptoms Impact CB across Countries 92 Shared Factors of CB Impacted by the Severity of PD Symptoms across Countries 92 Depression of informal caregiver of PD 92 Psychosis of PD 95 More advanced stages of PD 97 Executive functioning impairment of PD 99 Financial and physical burden related to informal caregiving for PD 100 Unique Factors of CB Impacted by the Severity of PD Symptoms across Countries 102 United States 102 Brazil 103 Research Question 4 Does the mobility of patient with PD impact informal CB across countries reviewed Which countries appear to have shared factors of CB impacted by the mobility of a PD patient Which countries appear to have unique factors of CB impacted by the mobility of a PD patient 104 Mobility of PD Patient Relation to Informal CB across Countries 104 Shared Factors of CB Impacted by Mobility of PD Patient across Countries 104 Increased caregiver strain of PD 104 Cognitive impairment of PD 108 Unique Factors of CB Impacted by Mobility of PD Patient across Countries 110 Depression of informal caregivers for PD 110 Anxiety of informal caregivers for PD 111 Chapter IV Discussion and Summary 113 Overview of Main Results 113 Specific Research Questions 115 Research Question 1 What factors contribute to informal CB with PD across various countries reviewed a. What shared factors appear to contribute to informal CB with PD across various countries reviewed b. What unique factors appear to contribute to informal CB with PD across various countries reviewed 115 Shared Factors that Contribute to Informal CB with PD across Countries 115 Disease duration of PD 115 Level of behavioral symptoms and cognitive dysfunction of PD 116 Level of severity of PD 117 Duration of informal caregiving for PD 118 Mood Status of Informal Caregiver for PD 119 Unique Factors that Contribute to CB with PD across Countries 120 Sleep disturbance of PD Patients 120 Financial concerns of informal caregivers for PD. 121 Lack of social support of informal caregivers for PD 121 Research Question 2 Does informal CB impact the QoL of informal caregivers for individuals with PD across countries reviewed a. Which countries appear to have shared factors of CB with PD impacting QoL b. Which countries appear to have unique factors of CB with PD impacting QoL 122 Shared Factors of CB Impacting QoL across Countries 122 Depression of informal caregivers for PD 122 Disease severity of PD 123 Mobility impairment of PD 123 Unique Factors of CB with PD Impacting QoL across Countries 124 Functional dependency of PD patient 124 Psychological dysfunction of PD. 125 Behavioral problems of PD related to executive functioning 125 Health-related QoL of PD patient 125 Duration of informal caregiving for PD 125 Research Question 3 Does the severity of a patients symptoms of PD (i.e., depression, psychosis, executive functioning, and physical impairment) impact informal CB across countries reviewed Which countries appear to have shared factors of CB impacted by the severity of a patients symptoms of PD Which countries appear to have unique factors of CB impacted by the severity of a patients symptoms of PD 126 Shared Factors of CB Impacted by the Severity of PD Symptoms across Countries 126 Depression of informal caregiver of PD 126 Psychosis of PD 127 More advanced stages of PD 128 Executive functioning impairment of PD 128 Financial and physical burden related to informal caregiving of PD 129 Unique Factors of CB Impacted by the Severity of PD Symptoms across Countries 130 Research Question 4 Does the mobility of patient with PD impact informal CB across countries reviewed Which countries appear to have shared factors of CB impacted by the mobility of a PD patient Which countries appear to have unique factors of CB impacted by the mobility of a PD patient 131 Shared Factors of CB Impacted by Mobility of PD Patient across Countries 131 Increased caregiver strain of PD 131 Cognitive impairment of PD 132 Unique Factors of CB Impacted by Mobility of PD Patient across Countries 133 Depression of informal caregivers for PD 133 Anxiety of informal caregivers for PD 133 Summary of Main Conclusions 133 Clinical Implications 134 Increase education and community awareness about PD 134 Importance of multicultural competence as it relates to informal caregivers for PD 137 Resources needed for informal caregivers for across cultures 139 Cross-Cultural needs for informal caregivers amongst other disorders 141 Quality of life-Based interventions for informal caregivers for PD 142 Family-Based interventions for informal caregivers for PD 143 Assessment for informal caregivers for PD across cultures 145 Womens needs as informal caregivers 146 Preventative care for informal caregivers across cultures 146 Holistic approach to caring for informal caregivers 148 Developing cultural competence amongst interdisciplinary care providers 149 Study Strengths 150 Study Limitations 151 Future Directions for Research 153 Summary 155 References 162 Appendix A Table of Studies 181 Table A1 Studies reviewed for Research Question 1 What factors contribute to informal CB with PD across various countries reviewed a. What shared factors appear to contribute to informal CB with PD across various countries reviewed b. What unique factors appear to contribute to informal CB with PD across various countries reviewed 181 Table A2 Studies reviewed for Research Question 2 Does informal CB impact the QoL of informal caregivers for individuals with PD across countries reviewed a. Which countries appear to have shared factors of CB with PD impacting QoL b. Which countries appear to have unique factors of CB with PD impacting QoL 192 Table A3 Studies reviewed for Research Question 3 Does the severity of a patients symptoms of PD (i.e. depression, psychosis, executive functioning, and physical impairment) impact informal CB across countries reviewed Which countries appear to have shared factors of CB impacted by the severity of a patients symptoms of PD Which countries appear to have unique factors of CB impacted by the sev erity of a patients symptoms of PD 199 Table A4 Studies reviewed for Research Question 4 Does the mobility of a patient with PD impact informal CB across countries reviewed Which countries appear to have shared factors of CB impacted by the mobility of a PD patient Which countries appear to have unique factors of CB impacted by the mobility of a PD patient 207 Appendix B Table of Results 213 Table B1 Shared Factors that contribute to Informal CB with PD across Countries 213 Table B2 Unique Factors that contribute to Informal CB with PD across Countries 214 Table B3 Shared Factors of CB impacting QoL of Informal Caregivers across Countries 215 Table B4 Unique Factors of CB with PD impacting QoL of Informal Caregivers across Countries 216 Table B5 Shared Factors of CB impacted by the Severity of PD Symptoms across Countries 217 Table B6 Unique Factors of CB impacted by the Severity of PD Symptoms across Countries 218 Table B7 Shared Factors of CB impacted by Mobility of PD patient across Countries 219 Table B8 Unique Factors of CB impacted by Mobility of PD Patient across Countries 220 Appendix C Figure of Results 221 Figure 1 Shared and uniques factors that contribute to CB with PD across countries 221 Figure 2 Shared and unique factors of CB with PD impacting QoL across countries 222 Figure 3 Shared and unique factors of CB impacted by the severity of PD symptoms across countries 223 Figure 4 Shared and unique factors of CB impacted by mobility of PD patient across countries. 224 List of Tables TOC t Table Head c Table A1 Studies reviewed for Research Question 1 What factors contribute to informal CB with PD across various countries reviewed a. What shared factors appear to contribute to informal CB with PD across various countries reviewed b. What unique factors appear to contribute to informal CB with PD across various countries reviewed 181 Table A2 Studies reviewed for Research Question 2 Does informal CB impact the QoL of informal caregivers for individuals with PD across countries in reviewed a. Which countries appear to have shared factors of CB with PD impacting QoL b. Which countries appear to have unique factors of CB with PD impacting QoL 192 Table A3 Studies reviewed for Research Question 3 Does the severity of a patients symptoms of PD (i.e. depression, psychosis, executive functioning, and physical impairment) impact informal CB across countries reviewed Which countries appear to have shared factors of CB impacted by the severity of a patients symptoms of PD Which countries appear to have unique factors of CB impacted by the sev erity of a patients symptoms of PD 199 Table A4 Studies reviewed for Research Question 4 Does the mobility of a patient with PD impact informal CB across countries reviewed Which countries appear to have shared factors of CB impacted by the mobility of a PD patient Which countries appear to have unique factors of CB impacted by the mobility of a PD patient 207 Table B1 Shared Factors that contribute to Informal CB with PD across Countries 213 Table B2 Unique Factors that contribute to Informal CB with PD across Countries 214 Table B3 Shared Factors of CB impacting QoL of Informal Caregivers across Countries 215 Table B4 Unique Factors of CB with PD impacting QoL of Informal Caregivers across Countries 216 Table B5 Shared Factors of CB impacted by the Severity of PD Symptoms across Countries 217 Table B6 Unique Factors of CB impacted by the Severity of PD Symptoms across Countries 218 Table B7 Shared Factors of CB impacted by Mobility of PD patient across Countries 219 Table B8 Unique Factors of CB impacted by Mobility of PD Patient across Countries 220 List of Figures Figure 1 Shared and uniques factors that contribute to CB with PD across countries 221 Figure 2 Shared and unique factors of CB with PD impacting informal caregiver QoL across countries 222 Figure 3 Shared and unique factors of CB impacted by the severity of PD symptoms across countries 223 Figure 4 Shared and unique factors of CB impacted by mobility of PD patient across countries. 224 Abstract This literature review examined 16 studies related to caregiver burden with Parkinsons Disease through the examination of four specific research questions focused on disease specific factors, informal caregivers quality of life, level of PD severity, and patient mobility as they relate and contribute to stress for informal caregivers. PD is a progressive neurological disorder with several motor and non-motor characteristics, leading to a need to have informal caregivers due to the gradual deterioration of symptoms. Consequently, informal caregivers experience stressors attributable to caring for a person with a chronic disease, and these stressors are termed caregiver burden (CB). To date, no other literature review has been completed that systematically examines cross-cultural caregiving in PD, and therefore this structured review aimed to understand PDs impact on informal caregivers quality of life, how severity of PD and patients mobility functioning contributing to CB and identifies the needs that arise for informal caregivers within a cross-cultural context. Upon completion of this literature review, the results indicated that disease duration, level of behavioral symptoms and cognitive dysfunction, level of severity, duration of informal caregiving, and mood state of informal caregivers are shared factors that contribute to CB across multiple cultures. In addition, unique factors related to CB were also found in certain countries for each research question such as depression and anxiety of informal caregivers, psychosis, financial burden, and lack of social support. Several recommendations are proposed including increased education and community awareness, expansion of resources for informal caregivers across cultures, preventative care for CB, an interdisciplinary approach with increased cultural competency for care providers, and the development of assessments tailored towards informal caregivers across cultures. Chapter I Introduction Parkinsons disease (PD) has been recognized as a serious health concern. It is the 14th leading cause of death in the United States (US) with symptoms requiring years to fully develop (Keller et al., 2012). PD is a progressive neurological disorder that encompasses a vast amount of motor and non-motor characteristics, which impairs a persons ability to function daily (Jankovic, 2008). Further, research indicates that PD is prevalent. It affects approximately 1 million people in the US and 10 million people universally (Dauer Przedborski, 2003 Parkinsons Disease Foundation, 2016). Further, PD affects roughly 13 people per 100,000 and 60,000 individuals are diagnosed with PD every year in the US (Bunting-Perry, 2006 Parkinsons Disease Foundation, 2016). Thus, PD affects a significant amount of the population with an age of onset typically from 55 to 70 years (Dauer Przedborski, 2003). Due to the age of onset commonly being later in life, symptoms are often dismissed and seen as a normal process of aging (Amirnovin, Williams, Cosgrove, Eskandar, 2004). Hence, PD symptoms often go unnoticed and worsen overtime, creating challenges for symptom management. Research suggests that the key indicator of PD is Lewy Bodies, which are clusters of alpha synuclein, a protein found in the mid-brain, brain stem, and olfactory bulb that assist with the brain functioning in a healthy way (Macphee Stewart, 2012 Parkinsons Disease Foundation, 2016). PDs main pathological features result from the loss of imperative nerve cells known as dopamine (DA) neurons located in the substantia nigra (Bov, Prou, Perier, Przedborski, 2005). The nigrostriatal pathway, the connection between the substantia nigra and corpus striatum, is a significant dopamine pathway in the brain and is involved in the generation of movement (Deumens, Blokland, Prickaerts, 2002). Thus, the loss of DA neurons in the substantia nigra creates marked reduction in dopamine function in the nigrostriatal pathway, impairing movement (Deumens et al., 2002). Moreover, PD was initially depicted by James Parkinson in an 1817 essay titled An Essay on the Shaking Palsy (Polymeropoulos et al., 1997). He explained the main pathological aspect of PD included the loss of neurons in the substantia nigra pars compacta (SNpc). The SNpc includes the nigrostriatal pathway, which manages the bodys movement and coordination (Jankovic, 2008 Parkinsons Disease Foundation, 2016). The SNpc is located in the back of the brain stem and holds neuromelanin and pigment cells that pass signals and manage sense of balance and motor movements to the striatum (Amirnovin et al., 2004). The SNpc produces dopamine that sends messages amongst the striatum and substania nigra (Venkateshappa, Harish, Mythri, Mahadevan, Bharath, Shankar, 2012). Thus, when the cells deteriorate in the substantia nigra, a reduced amount of dopamine is created, triggering the neurons in the striatum to launch uncontrollably leading to impairment in motor functioning, such as tremors (Venkateshappa et al., 2012). As a result, the reduction of dopamine inhibits the ability to complete motor movements without error (Amirnovin et al., 2004 Venkateshappa et al., 2012). Consequently, as the disease progresses over time, the amount of dopamine continues to decrease in larger amounts, creating more of a challenge to function (Jankovic, 2008 Parkinsons Disease Foundation, 2016). Overall, research continues to examine what is effective for reducing symptoms of PD because of the loss of dopamine. However, PD currently remains a prevalent and complex disease that is in need of more research to examine the onset of symptoms, causes, and beneficial treatments. Etiological Theories of PD Currently, the exact cause of PD is uncertain and a cure has not been discovered despite decades of research focusing on the initial death of dopamine neurons (Alves, Forsaa, Pedersen, Gjerstad, Larsen, 2008 Dauer Przedborski, 2003). However, researchers suggest that one factor in the development of PD is due to individual differences among patients, involving genetic and environmental factors (Parkinsons Disease Foundation, 2016 Warner Schapira, 2003). More specifically, a toxin in the environment or other particular environmental circumstances might trigger PD, while ones genetic composition can do so as well (Parkinsons Disease Foundation, 2016 Warner Schapira, 2003). Dauer and Przedborski (2003) found in their study only 5 of participants diagnosed with PD were found to have a hereditary factor. In contrast, other studies have indicated 15 to 25 of patients with PD have a first-degree relative diagnosed with PD (Parkinsons Disease Foundation, 2016 Warner Schapira, 2003). If an individuals parent or first-degree relative was diagnosed with PD, they have a 4 to 9 chance of developing the disease later in life (Parkinsons Disease Foundation, 2016 Warner Schapira, 2003). Therefore, a parent that was diagnosed with PD increases the likelihood of their offspring developing the disease as well (Parkinsons Disease Foundation, 2016 Warner Schapira, 2003). Also, age is viewed as an increased risk factor with 2 to 4 of individuals 60 years and older at risk (Parkinsons Disease Foundation, 2016 Warner Schapira, 2003). Moreover, researchers have suggested that gene mutations such as PINK1, LRRK2, DJ-1, and glucocerebrosidase (GBA), create early onset of PD as a result of malfunctioning dopamine-secreting cells (Parkinsons Disease Foundation, 2016 Warner Schapira, 2003). The role of the GBA enzyme is to break down fatty wastes within cells and organs. Thus, GBA contributes to the onset of PD as it makes the enzyme ineffective and leading to harmful buildup of the bodys cellular waste products (Alcalay et al., 2015). Genetic research in PD is striving to target the genetic factors of the disease to fully understand different forms of PD. In terms of environmental factors, researchers have suggested that a particular toxin in ones surroundings may contribute to the cause of PD (Parkinsons Disease Foundation, 2016 Warner Schapira, 2003). Epidemiological research suggests that in rural areas, well water, manganese, and pesticides may lead to the diagnosis of PD (Stoessl, 1999 Warner Schapira, 2003). Further research indicates that exposure to particular chemicals for long periods of time might increase the risk of PD. Some examples of chemicals that may trigger PD include 1-methyl-4-phenyl1-1, 2, 3, 6-tetrahydropyridine (MPTP), insecticides, permethrin, beta-hexachlorocyclohexane, herbicides paraquat, and fungicide maneb (Polymeropoulos et al., 1997 Warner Schapira, 2003). More specifically, MPTP is found in an active narcotic compound and was recognized as a Parkinsonian syndrome in patients who reported abusing drugs (Kopin, 1987). Overall, MPTP demolishes dopaminergic neurons in the substantia nigra, which is known to generate long-term PD symptoms. In spite of the high occurrence of PD, no toxin has been empirically proven to be the single cause of PD. However, distinguishing the causes of PD could assist researchers in understanding the early signs that contribute to PD developing (Venkateshappa et al., 2012). Additionally, researchers might better understand what preventative measures can be utilized to decrease the onset of additional PD cases. Symptoms of PD Physical symptoms of PD. While symptoms differ for each patient, there are prominent physical symptoms that impact a patients motor ability. For example, there are four main motor symptoms of PD (Alves et al., 2008). The main symptoms include tremor, bradykinesia, rigidity, and postural instability (Alves et al., 2008). Tremors commonly occur at a rate of 4 and 6 Hz in the hands, arms, legs, jaw, and face (Levy, Hutchison, Lozano, Dostrovsky, 2000). Tremors of the hands are known as supination-pronation tremors caused by dispersing back and forth to each hand (Jankovic, 2008). Rest tremors may disappear during behaviors of sleep and performance, while patients have described experiencing internal tremors that are not visible (Askenasy, 2003). Additionally, patients may experience more severe tremors during the initial signs of the disease. Bradykinesia is known as decreased speed in movement, as well as impairment in preparing and implementing movement (Carbon, Ghilardi, Dhawan, Eidelberg, 2007). More specifically, a patient may experience decreased reaction times, difficulty with fine motor skills, excessive drooling, hypomimia, and reduced blinking (Jankovic, 2008). Rigidity refers to experiencing heightened resistance when submissively extending a muscle (Jankovic, 2008 National Parkinson Foundation, 2016). Rigidity can be described as stiffness of the appendages and occurs in 90-99 of PD cases (Jankovic, 2008 Watts, Wiegner, Young, 1986). Also, rigidity can be explained by experiencing tightness in ones limbs and has a possible cogwheel experience in which a tremor is underlying the rigidity (Jankovic, 2008 National Parkinson Foundation, 2016 Watts et al., 1986). Postural instability relates to impaired sense of balance and often takes place in the later stages of PD (Boonstra, van der Kooij, Munneke, Bloem, 2008 Jankovic, 2008). Postural instability is a main cause for falls and hip fractures as well (Felson et al., 1989). Other physical symptoms include decreased facial expression, unclear speech, increased production of saliva, and difficulty eating and taking care of ones personal hygiene (Jankovic, 2008). Moreover, patients may experience orthostatic hypotension, constipation, urinary and sexual dysfunction, weight loss, and abnormal sweating (Jankovic, 2008). Understanding and recognizing the four primary motor symptoms of PD, as well as secondary symptoms, can assist clinicians in differentiating this complex disease from other possible disorders and the process of normal aging. Emotional symptoms of PD. Emotional symptoms are particularly common to occur for patients diagnosed with PD. Roughly 44 of PD patients experience depressive and anxious symptoms (Tolosa, Compta, Gaig, 2007). Patients may begin to experience sadness, fear, or nervousness regarding their loss of movement and ability to fulfill activities of daily living (ADLs) (Marr, 1991 Parkinsons Victoria Ltd, 2016). Moreover, as the disease progresses over time, a patients depression and anxiety may increase attributable to functioning becoming more challenging (Walsh Bennett, 2001). Research indicates patients experience stress as a result of ones symptoms deteriorating and the inability to overcome the impact of the disease (Brod, Mendelsohn, Roberts, 1998 Parkinsons Victoria Ltd, 2016). Other possible contributing triggers to stress may include processing the loss of physical functioning, productivity in ones career, difficulty with ADLs, and general frustration regarding adjusting to a limited environment (Brod et al., 1998 Parkinsons Victoria Ltd, 2016). Ultimately, a patient becomes stressed due to slowly losing complete control over living an independent life. Additionally, apathy, (a decrease in emotions or interest in ones life), may occur (Parkinsons Victoria Ltd, 2016 Pluck Brown, 2002). Specifically, a patient may become uninterested in engaging in activities or hobbies they once enjoyed because of feeling fatigue and lack of motivation or pleasure (Parkinsons Victoria Ltd, 2016 Pluck Brown, 2002). Apathy is known to be directly connected to decreased levels of dopamine as dopamine is the main neurotransmitter that affects a persons ability to feel pleasure and motivation (Parkinsons Victoria Ltd, 2016, Pluck Brown, 2002). Overall, clinicians need to become aware of the emotional symptoms that occur in patients with PD to help symptom management. Cognitive symptoms of PD. Patients diagnosed with PD experience a broad range of cognitive symptoms that severely challenge their way of life. Dementia is a frequent cognitive symptom that 40 of patients with PD experience (Emre et al., 2004). Follow-up research suggests that the prevalence rate of dementia in PD patients is approximately 80 with age being the primary predictor (Aarsland, Andersen, Larsen, Lolk, 2003). Dementia refers to a significant decline in memory, difficulty with communication, inability to concentrate and pay attention, and use reason and judgment in decision-making. Thus, completing ADLs becomes extremely difficult as the disease progresses. Also, dementia is associated with increased rate for mortality in the advanced stages of PD (Aarsland, Tandberg, Larsen, Cummings, 1996 Marder et al., 1991). Therefore, as the disease progresses, the risk of dementia increases (Aarsland et al., 2001 Elizan, Sroka, Maker, Smith, Yahr, 1986 Hughes et al., 2000 Marder et al., 1991). Other cognitive symptoms associated with PD include impairment in executive functioning. Research consistently shows a person with PD experiences difficulty problem solving, completing tasks, decision-making, and planning (Jankovic, 2008 Williams-Gray, Foltynie, Brayne, Robbins, Barker, 2007). Thus, PD is referred to as a dysexecutive syndrome. Memory disturbances occur for patients with PD due to difficulty restoring and encoding new information and retrieving short-term and long-term information (Jankovic, 2008 Williams-Gray et al., 2007). In addition, PD patients experience impairment in sustaining and focusing attention in more than one aspect of ones environment (Emre et al., 2004 Litvan, Mohr, Williams, Gornez, Chase, 1991 Pillon, Dubois, Hermitte, Agid, 1986). Patients also can experience difficulty in verbal fluency such as slowness in thought processes and word finding as well (Jankovic, 2008 Williams-Gray et al., 2007). Lastly, visual spatial skills deteriorate creating impairment processing, discrimination, and responding to visual stimuli in ones surroundings. Visual misperceptions and illusions may occur as a result of their visual spatial abilities becoming impaired. In general, cognitive deficits of PD negatively impact a patients daily functioning in significant ways. For example, paying bills, grocery shopping, bathing, communicating verbally, taking medications, and driving are examples of ADLs that become impaired over time by reason of cognitive decline (Heaton et al., 2004). Furthermore, decline in attention and visual spatial processing creates decline in walking, coordinating balance, navigating the environment, and conversing accurately with others (Rizzo Buckwalter, 1997). Research indicates that the cognitive symptoms may be dismissed due to focusing on the motor symptoms. Therefore, medical professionals must gain awareness over preventative treatment for PD as well as interventions that may decrease the gradual progression of cognitive decline. Behavioral other symptoms of PD. While there are substantial emotional and cognitive features of PD, there are also behavioral features. Research suggests that 13.6 of patients diagnosed with PD experience obsessive-compulsive and impulsive behaviors such as gambling, shopping, and binge eating (Weintraub et al., 2010). In addition, sleep disturbance is known to occur for 96 of clients diagnosed with PD (Jankovic, 2008 Lees, Blackburn, Campbell, 1988). Specifically, rapid eye movement disorder is considered a pre-parkinsonian state and understood as experiencing violent dreams and engaging in dramatic and exaggerated physical and verbal behaviors such as yelling or kicking (Schenck, Bundlie, Patterson, Mahowald, 1987). Moreover, possible sensory abnormalities may be present such as olfactory dysfunction, pain, akathisia, and paresthesia (Jankovic, 2008). Olfactory disturbance is known as a Parkinsonian symptom and research has suggested a connection with decreased dopaminergic neurons and the olfactory bulb (Chaudhuri, Healy, Schapira, 2006). Psychosis is another cognitive impairment one-third of patients diagnosed with PD may experience in later stages (Thanvi, Lo, Harsh, 2005). Research indicates that psychosis largely influences placement in nursing homes and increases the chance of death (Factor et al., 2003). Possible psychotic symptoms that may occur include hallucinations and delusions (Marsh, 2005). Often, visual hallucinations occur in approximately 15 to 40 of PD patients, whereas delusions occur in 3 to 30 of PD patients (Marsh, 2005). Research suggests that there are particular kinds of hallucinations PD patients experience (Marsh, 2005). Specifically, minor hallucinations, such as complex vivid visual perceptions of humans or animals may occur (Fnelon, Mahieux, Huon, Zigler, 2000 Marsh, 2005). The hallucinations usually include the patient seeing a human or animal in a room or passing a persons peripheral visual field (Fnelon et al., 2000). Additionally, patients may experience illusions of objects that appear transformed in a distorted way (Fnelon et al., 2000). Other types of hallucinations that may occur involve auditory hallucinations of hearing voices, olfactory hallucinations of particular pleasant or displeasing smells, gustatory hallucinations of enjoyable or unenjoyable taste, or somatic hallucinations of feeling specific things such as bugs on the body (Fnelon et al., 2000 Inzelberg, Kipervasser, Korczyn, 1998 Tousi Frankel, 2004). In terms of delusions, PD patients are known to experience paranoia (Marsh, 2005). Usually paranoid delusions are focused on a single topic such as jealousy, being controlled or poisoned, or believing people are plotting against them (Marsh, 2005). Overall, PD experiences symptoms that dramatically affect a patients daily life. Therefore, comprehending possible symptoms that may occur throughout the gradual progression of PD can assist clinicians in providing the most beneficial treatment for patients. Progression of PD Symptoms Over Time PD is a neurodegenerative disease that progresses gradually over time (Parkinsons Study Group, 2004). Understanding PDs stages of progression is vital in creating effective treatment strategies. Nevertheless, research indicates that the early phases of the disease are difficult because of the various ways PD manifests for each patient (Jubault et al., 2009). For example, progression of the disease may appear differently for patients due to demographics, age, and gender (Alves et al., 2008 Nakamura et al., 2001). As a result, researchers have dedicated time examining which biomarkers accurately influence PDs progression (Au, Adams, Troiano, Stoessl, 2005 Brooks et al., 2003). While doing so, researchers indicate a complicated relationship exists between clinical symptom assessments and neuroimaging (Ravina et al., 2005). However, research indicates that PD is caused by a reduction of dopamine in the substantia nigra (Parkinsons Study Group, 2004). Therefore, as the dopaminergic neurons gradually deteriorate, a patients symptoms continually worsen (Rinne, 2000 Riederer, 1976). Patients that experience mild motor impairment appear to have shown a faster decline compared to patients with marked impairment at their initial assessment (Hawkes, 2008 Schrag et al., 2007). Additionally, age is the leading predictor in determining the progression of the disease, and cognitive impairment is known to occur in patients 70 years and older (Aarsland, Beyer, Kurz, 2008 Post, Merkus, Haan, Speelman, 2007). Further, normal aging creates difficulty for medical professionals to distinguish the cause of a patients symptoms considering individual differences. Thus, PD is a perplexing disease that poses a challenge for clinicians as symptoms progress. Major or Mild Neurocognitive Disorder Due to PD To be diagnosed with a major or mild neurocognitive disorder due to PD, an individual must meet criteria based on the Diagnostic Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) for major or mild neurocognitive disorder that occurs within the context of an established PD diagnosis (APA, 2013). Criteria for a major neurocognitive disorder include indication of substantial impairment of cognitive abilities compared to their average level of functioning (APA, 2013). Cognitive abilities that may become diminished include concentration, decision-making, attention, learning, memory, verbal, and motor skills (APA, 2013). Confirmation of cognitive decline must be acknowledged by a caregiver or a health care provider, as well as recognized and recorded by neurological or clinical assessment (APA, 2013). In addition, for major neurocognitive disorder, the cognitive impairment creates difficulty with an individuals daily life routine. Thus, an individual may need help with ADLs such as handling finances or engaging in personal hygiene. However, the cognitive impairment cannot be due to delirium and cannot be justified by an alternative mental and medical condition (APA, 2013). In addition, a major or mild neurocognitive disorder for PD can be specified with or without behavioral disturbance that may include psychosis, mood irritation, or lethargy (APA, 2013). PD Dementia compared to Lewy Body Dementia Dementia with Lewy Bodies (DLB) is a type of dementia with decline in memory, thought processes, and social abilities that ultimately impact an individuals daily routine (Grand, Caspar, MacDonald, 2011). Lewy Bodies are clusters of alpha synuclein, which are protein found in the mid-brain, brain stem, and olfactory bulb that assist with the brain functioning in a healthy way (Macphee Stewart, 2012). Lewy body development and loss of neurons in the brainstem lead to impairment in movement. DLB has significant Lewy body development in the paralimbic and neocortical structures as well as extensive depletion of acetylcholine neurotransmitters, which result in degeneration of the brain stem and forebrain (McKeith, 2002). DLB accounts for 15 to 20 of dementia in the older adult population with an age of onset typically from 50 to 83 years old with males being more at risk (McKeith, 2002). Individuals diagnosed with DLB experience a wide range of cognitive, emotional, and physical symptoms. Cognitive decline occurs such as impairment in memory, executive functioning, frontal-subcortical skills, and visuospatial abilities (Huang, 2016). Specifically, variation and instability in cognitive functioning and level of consciousness are the two most common features in DLB (Huang, 2016 McKeith, 2002). For instance, a patient tends to experience decline in alertness and coherency, while expressing feelings of confusion and unresponsiveness to questions (Huang, 2016). Also, 66 of patients experience visual hallucinations, such as seeing people or animals appear without producing sounds (McKeith, 2002). Emotional responses such as depression, intense fear, and lack of emotional expression are frequent to experience as well (McKeith, 2002). Moreover, 70 of patients experience Parkinsonian symptoms such as bradykinesia, rigidity, and postural instability (McKeith, 2002). Thus, DLB patients often experience falls and impairment in ones attention and consciousness similar to PD patients (McKeith, 2002). Other similarities that exist include impairment in executive functioning, Lewy body distribution and density, dopaminergic deficits, and neuroleptic sensitivity (McKeith, 2002 McKeith, 2004). Specifically, Lewy bodies develop within the substantia nigra typically in the later stages of PD (Huang, 2016). Due to the similarities in presentation, differentiating between a DLB and PD diagnosis is challenging because of the overlap of symptoms. A subjective 1-year rule is commonly used that suggests the onset of dementia within 12 months of parkinsonism meet the criteria of DLB and more than 12 months of parkinsonism before dementia meet the criteria of PD (McKeith, 2004). Overall, DLB should be diagnosed when dementia is present before or concurrently with PD and PD should be diagnosed when dementia occurs after PD has been well developed (Padovani, Costanzi, Gilberti, Borroni, 2006). This approach assists in clinical diagnosis as well as symptom management. Nevertheless, as a result of DLB and PD experiencing similar major neuropathological differences, an accurate diagnosis cannot be given based on autopsy results (McKeith, 2004). Overall, additional research is needed to accurately diagnose dementia-related disorders. Level of Severity of PD PD can be specified by the level of severity by reporting the symptoms to be mild, moderate, or severe based on an individuals ability to function daily (Iranzo et al., 2006 Meireles Massano, 2012 APA, 2013). For instance, mild PD includes troublesome movement that does not interfere with completing ADLs, tremor on one side of the body, and differences in posture, walking, or facial expression (Parkinsons Disease Foundation, 2016 Nutt Wooten, 2005). In addition, patients may express concern experiencing stiffness, slowness, and impaired coordination in the early stages of PD (De Lau, Koudstaal, Hofman, Bretelet, 2006). During the initial stages of PD, research consistently shows anxious and depressive symptoms occur as a result of being diagnosed with PD and experiencing difficulty maintaining mobility and independence (Gage Storey, 2004). On the other hand, research also indicates depression may be a symptom that precedes the diagnosis and contribute to the risk of developing PD (Leentjens, Van den Akker, Metsemakers, Lousberg, Verhey, 2003). Patients also demonstrate feelings of denial and refusal of acceptance regarding the diagnosis of PD (Leentjens et al., 2003). Moderate PD involves movement impairment of the entire body, slowness in coordination, difficulty balancing, and freezing where the feet cannot move off the floor (Parkinsons Disease Foundation, 2016 Nutt Wooten, 2005). In addition, a patients impaired posture and walking abilities are more evident (Parkinsons.org, 2017). Nevertheless, patients often continue to live alone despite ADLs becoming more challenging (Parkinsons.org, 2017). As a result of an increase in slowness and difficulty in balance, falls are more frequent (Politis et al., 2010). Due to the increased strain of physical movements, patients experience fatigue performing routine and simple behaviors. As a result, the patient begins to isolate and withdraw himself or herself from the social environment. Advanced PD includes impairment in walking and cognitive functioning, as well as requiring a wheelchair, becoming bedridden, and needing assistance with ADLs (Parkinsons Disease Foundation, 2016 Nutt Wooten, 2005). A patient is incapable of living independently and may experience cognitive symptoms such as hallucinations and delusions (Politis et al., 2010). In general, a patient requires 24-hour assistance in ADLs (Politis et al., 2010). Overall, symptoms of depression, anxiety, fatigue, and apathy begin to increase as a result of a patient losing daily independence. A patient might experience feelings of hopelessness, helplessness, sadness, and defeat. Diagnostic Assessments for PD Based on the complexity and variety of symptoms that may occur, assessment is crucial in accurately diagnosing PD. Currently, a conclusive test for diagnosing PD is not present, but there are assessment methods used to differentiate the disease from other forms of disorders (Jankovic, 2008). An autopsy revealing the validation of Lewy bodies has been deemed the standard for definitively diagnosing PD (Alves et al., 2008). Rating scales are used to assess for motor impairment and disability (Jankovic, 2008). For example, the Hoehn and Yahr (H Y) scale assesses for disease progression using a range of 0 (no signs of disease) to 5 (wheelchair bound or bedridden) (Hoehn, Yahr, 1998 Jankovic, 2008). Also, the Unified Parkinsons Disease Rating Scale (UPDRS) is one of the most reliable and valid scale for measuring disability and impairment in PD (Fahn Elotion, 1987 Jankovic, 2008). Further, the UPDRS has been used to assess the progression of the disease and the results suggest that PD decline varies depending on the patient, while appearing more rapid in the early stages of the disease (Jankovic, 2008). Additionally, other rating scales can be used to assess for non-motor symptoms, such as scales measuring symptoms of depression and quality of life (QoL) (Jankovic, 2008). For example, the Health-Related Quality of Life (HRQoL) (Chauduri et al., 2006) scale measures a patients health status regarding ones physical, mental, emotional, and social functioning and how it impacts their QoL. The Scales for Outcomes in Parkinsons Disease-Cognition (SCOPA-COG) (Marinus et al., 2003), the Nonmotor Symptoms Scale (NMSS) (Chaudhuri et al., 2007) and the Movement Disorder Society-sponsored revision of the Unified Parkinsons Disease Rating Scale (MDS-UPDRS) (Goetz et al., 2007) are used as well to evaluate non-motor symptoms. While there is not a definitive assessment for diagnosing PD, rating scales can assist clinicians in understanding the symptom presentation of patients and if they meet criteria for PD. In sum, PD is a multifaceted disease that is in significant need of additional research to examine the etiology, effective treatment approaches, and possibly a cure. PD is recognized as a disease that is displayed by a wide-ranging array of motor and non-motor characteristics with limited conclusive research found (Alves et al., 2008). Specifically, there is no conclusive diagnostic assessment for PD due to uncertainty regarding the exact causes of PD, which creates a challenge for clinicians to truly be competent in the awareness of the symptoms and presentation of PD (Jankovic, 2008). Individual differences are critical in taking into consideration, as well as examining particular regions of the world in which the person with PD lives by cause of the vast discrepancies of a persons daily life. Further, research must continue to examine the precise genetic or biochemical markers of PD for differentiation from other disorders (Michell, Lewis, Foltynie, Barker, 2004). In brief, PD is a prevalent and problematic disease due its immense effect on the population, lack of research for constructive treatment, and lack of comprehension of the disease. Treatment Modalities for PD While there is no cure for PD, there are treatment modalities and medications that assist in managing and subsiding the symptoms overtime. Prescription medications are chosen based on an individuals differences in terms of their symptom presentation and other medical conditions as well as their age (Parkinsons Disease Foundation, 2016). Examples of prescribed medications used include carbidopa/Levodopa therapy, dopamine agonists, MAO-B inhibitors, and COMT inhibitors (Rao, 2006). Carbidopa/Levodopa therapy, also known as Sinemet, is known as the most beneficial and effective treatment for PD (Rao, 2006). However, patients may experience side effects such as nausea, vomiting, dyskinesia, psychosis, low blood pressure, and dizziness (Barbeau, 1969 Saint-Cyr, Taylor, Lang, 1993). Dopamine agonists are prescribed to provoke the sections of the brain that are impacted by dopamine (Parkinsons Disease Foundation, 2016). Therefore, the brain begins to believe normal levels of dopamine are being produced (Jenner, 2003). In addition, dopamine agonists can be taken in combination of carbidopa/levodopa (Jenner, 2003). Common oral pills prescribed include pramipexole (Mirapex), bromocriptine (Parlodel), and ropinirole (Requip) (Setter, 2008). Furthermore, apomorphine (Apokyn) is a fast-acting medication that can be injected to lessen symptoms quickly for approximately 30 to 60 minutes (Giroux, 2007 Setter, 2008). Side effects that may be experienced because of dopamine agonists include nausea, hallucinations, sedation, and low blood pressure (Giroux, 2007 Setter, 2008). Anticholinergics are used to lessen tremors and dystonia but shown to have a minimum effect on other Parkinsonian symptoms (Davie, 2008). Anticholinergics diminish the activity of acetylcholine neurotransmitter, which is responsible for managing and controlling movement. Side effects that may occur include blurred vision, dry mouth, and urinary retention (Davie, 2008 Parkinsons Disease Foundation, 2016). MAO-B inhibitors prevent the brain from dissolving levodopa and are effective in decreasing PD symptoms (Jankovic Stacy, 2007). Examples include Eldepryl and Zelapar and are recommended to be used in the later stages of PD (Jankovic Stacy, 2007). In addition, COMT inhibitors have been shown to be ineffective for PD but are used to diminish the breakdown of levodopa in the brain (Brownlee, 2008 Davie, 2008). While there are prescription drugs that have been shown to be effective, over-the-counter drugs are suggested to decrease the progression of the disease (Beal, 2004). For example, Coenzyme Q10 (CoQ10) assists in health of the mitochondria, which researchers suggest may influence the onset of PD (Beal, 2004). In general, CoQ10 may slow down PD, but little research has been done suggesting the antioxidant from being effective. Other over-the-counter drugs that can be used include vitamin E, vitamin C, and healthy foods that may decrease the progression of symptoms by cause of their oxidative assets (Johnson, Gorell, Rybicki, Sanders, Peterson, 1999). Overall, prescription and over-the-counter drugs are available for patients diagnosed with PD in slowing the progression of the disease and diminishing symptoms, but side effects are to be considered when ingesting a substance. Furthermore, various patients turn to surgical treatments to improve the progression and symptoms of the disease. The two treatments available for patients diagnosed with PD include deep brain stimulation (DBS) and insertion of a tube into the small intestine that transports carbidopa/levodopa (Duopa) (Nyholm, 2012 Rodriguez-Oroz et al., 2005). DBS has been permitted to be done for patients who have experienced PD symptoms for at least 4 years (Rodriguez-Orzo et al., 2005). In addition, the patients motor impairment is difficult to manage with the use of medication. During the surgical procedure, electrodes are inserted into a particular area of the brain. This is completed with the assistance of an MRI machine and recording of brain wave activity (Deuschl et al., 2006). Next, a surgeon inserts an impulse generator, also known as IPG, beneath the collarbone or stomach and the IPG promotes an electrical pulse to a particular section of the brain to improve motor performance (Deuschl et al., 2006). DBS is known to be an effective form of treatment for PD, especially with reducing tremors and dyskinesia (Kumar, Lozano, Sime, Halket, Lang, 1999). Nevertheless, there are side effects that may occur such as infection, stroke, bleeding, or seizures (Starr Sillay, 2008). The other surgical treatment available is Duopa, which delivers the gel material into the small intestine to improve motor movement and control (Ondo, Jankovic, Schwartz, Almaguer, Simpson, 1998). Duopa is known to be quick in absorption, while causing possible risks such as displacement of the tube, infection, bleeding, redness, or pancreatitis (Antonini Odin, 2009). The significance of surgical treatments allows patients to have multiple opportunities to choose from in terms of slowing down the progression of the disease and improve symptoms. In addition, researchers can continue to search for alternative treatments by ruling out what has been known to be effective. Another treatment a patient can turn to for assistance in their ADLs is occupational therapy (OT) (Dixon et al., 2007 Murphy Tickle-Degnen, 2001). More specifically, OT allows patients to learn to engage in personal hygiene, chores, and other leisure activities by improving the patients QoL and finding alternative ways to complete ADLs (Dixon et al., 2007). Nevertheless, additional research needs to be completed to examine other ways OT can become effective in reducing symptoms of PD as well as stressing the importance of integrative healthcare. In general, PD is a complex disease that is in significant need of additional research to examine the etiology, effective treatment approaches, and possibly a cure. Nevertheless, individual differences are critical in taking into consideration as well as examining particular regions of the world due to the vast discrepancies of a persons daily life. Informal Caregiving in General Informal caregivers are a vital resource for the healthcare of an outstanding number of recipients throughout the US (Schulz Sherwood, 2008). Research shows that informal caregiving is a widespread issue with 12 million citizens in the US engaging in some type of informal caregiving role for an older adult relative (Smith, 2015). Roughly, 21 of the adult population cares for recipients who are 18 years and older (Brown et al., 2009). Statistics show that approximately 22 of informal caregivers are providing care for two recipients and 8 are providing care for three or more recipients (National Family Caregiver Support Program (NFCSP), 2016). Informal caregivers are also perceived as a highly vulnerable population as 50 of the population is 50 years of age and older (NFCSP, 2016). In general, the increased population of informal caregivers in the US experiences numerous prevalent challenges as a result of meeting the responsibilities of their daily life, as well as the lives of the recipients of care. The older adult population (65 years and older) continues to increase due to people living longer than ever before in history (Clark Weber, 1997). Statistics show that by the year 2040, older adults will make up 22.6 of the US population (Clark Weber 1997). Thus, the need of informal caregivers will drastically increase, creating a societal dilemma. Further, people who are 65 years and older are commonly referred to as the recipients of caregiving and are known as frail elders (Smith, 2015). The older population experience impairment in completing ADLs and instrumental activities such as preparing meals and transportation (Smith, 2015). Research also indicates that women care for their parents more over the years than for their own children and those women on average will contribute some kind of informal caregiving for approximately 18 years (Clark Weber, 1997). Other women report taking care of their parents and children at the same time, which is referred to as the sandwich generation (Clark Weber, 1997 Smith, 2015). As older adults, live longer, they will experience more severe and chronic medical conditions and require more care (US Department of Health and Human Services, 2008). Therefore, the need for informal caregivers will continue to increase and become more complex and challenging. Characteristics of informal caregivers. An informal caregiver refers to an unpaid family member, friend, or significant other who assists a patient in completing daily tasks (Savage Bailey, 2004). These caregivers are also known as informal caregivers and assist care recipients (individuals experiencing a chronic condition) in completing ADLs (Savage Bailey, 2011). An individual may decide to take on the informal caregiving role by reason of experiencing a significant amount of care and love for the patient, societal coercion, lifestyle norms, religious fulfillment, feeling of obligation, and/or selfish needs (Eisdorfer, 1991). The recipient of care tends to live with the informal caregiver or live nearby to receive the most efficient care (Smith, 2015). Additionally, the majority of recipients have a primary caregiver and secondary caregivers (Clark Weber, 1997). A primary informal caregiver takes on the majority of the responsibilities of the recipient and more challenging situations (Clark Weber, 1997). It is likely that large families divide the caregiving duties to decrease stress for the primary informal caregiver and, as a result, informal secondary caregivers provide support for the primary informal caregiver (Clark Weber, 1997 Prince, 2004). Approximately, 75 of informal caregivers are women such as spouses, daughters, and sisters (Brack, Christiaens, Wauterickx, 2008 Stone, Cafferata, Sangl, 1987). Research depicts the average informal caregiver as a 46-year-old, married, female, with a career. Caregivers take part in numerous hands-on responsibilities (Brodaty Donkin, 2009). For example, caregivers may provide supervision throughout the day, shopping for groceries or personal hygiene products, physical lifting, dressing, managing bills, providing medication, and providing emotional encouragement (Walker, Pratt, Eddy, 1995). In addition, caregivers provide coping skills and treatment regimens, while communicating with insurance companies, physicians, nurses, and other parties on the patients behalf (Schumacher, Beck, Marren, 2000). While taking on multiple areas of concern for the recipient, informal caregivers devote approximately 20 to 40 hours a week to the caregiver role over a 4 to 5-year period (Smith, 2015). While caregivers provide an immense amount of time taking care of another person, this role may have begun unexpectedly by cause of a particular illness or injury (Smith, 2015). On the other hand, the responsibilities may have become more demanding due to the recipients health deteriorating as a result of age increasing or experiencing a chronic disease. Evidence suggests that a caregivers life drastically changes when they assume the caregiving role, requiring them to adapt to a different way of life. Clinicians need to become aware of what possible challenges caregivers face to provide them with the most adequate advocacy. Informal Caregiver Stressors As a result of taking on the role as an informal caregiver, it is inevitable that one will make sacrifices and face challenges in ones daily life (Smith, 2015). As an individual becomes older, and a disease or medical condition worsens, his/her dependency on the informal caregiver increases (Shaw, Patterson, Semple, Ho, Irwin, Haugler, 1997). Specifically, as the informal caregiver recipients physical impairment increases, the more physical and psychological distress the informal caregiver experiences (Shaw et al., 1997). Due to caregiving being a difficult and exhaustive role, research has demonstrated that informal caregivers experience extreme psychological, physical, and financial distress that may influence their own well-being as well as the well-being of the caregiver recipient (NFCSP, 2000 Smith, Smith, Toseland, 1991). Research indicates that approximately 18 to 35 of informal caregivers report their health as fair or poor (Schulz, OBrien, Bookwala, Fleissner, 1995). As a result, informal caregivers are known to be called the hidden patients due to lack of acknowledgment of their need for support (Fengler Goodrish, 1979 Kristjanson, Linda, Aoun, 2004). Moreover, the current literature represents inconsistency regarding the predictors that contribute to what specifically triggers stress for informal caregivers (Navaie-Waliser et al., 2002). As such, it is critical to examine what particular aspects become problematic for informal caregivers to provide the support and care that they need to maintain a healthy lifestyle. Psychological stressors. Informal caregivers experience a number of emotional stressors that influence multiple aspects of their daily life. For instance, informal caregivers begin to focus the majority of their attention and worries onto the recipients health (Clark Weber, 1997). Therefore, fear and worry are common feelings experienced as a result of direct observation of the recipient of cares health progressively becoming worse (Clark Weber, 1997). Also, informal caregivers may experience guilt because they are unable to cure or relieve the recipient of cares illness (Clark Webber, 1997). Due to gaining responsibility of the care of another person, an informal caregivers identity may become altered and isolated (Smith, 2015). As a result, an informal caregiver experiences emotional distress due to the loss of ones support system and identity. Therefore, depression is known to occur by cause of experiencing sadness and hopelessness of their own personal losses, as well as observing their significant other slowly deteriorating physically and emotionally (Chappell Penning, 1996 Blakley Jaffe, 1999). Research demonstrates that having a healthy social support system assists informal caregivers in decreasing immense amounts of psychological distress (Chappell Reid, 2002). Moreover, an informal caregiver may experience anger and resentment towards the recipients health declining and their need to take on a caregiving role (Smith, 2015). Experiencing guilt is common due to feeling bad about wanting more time to oneself and engaging in self-care when the recipient is in need of assistance (Smith, 2015). Psychological stressors are common for informal caregivers to experience and can impact their ability to fulfill ones caregiver obligations. Also, an individuals immune system becomes weakened because of experiencing psychological distress (Pinquart Sorensen, 2007 Shaw et al., 1997). Therefore, an informal caregiver becomes susceptible to becoming ill (Pinquart Sorensen, 2007 Shaw et al., 1997). Thus, stress weakens informal caregivers health and hinders their ability to fulfill the caregiving role. Awareness of possible psychological distresses is significant to understand what kind of attention informal caregivers may need to function in a healthy way. Physical stressors. Statistics demonstrate 22 of informal caregivers are over 50 years old (NFCSP, 2000). Thus, informal caregivers experience a decrease in their health and physical ability simply because of normal aging (NFCSP, 2000). Further, research suggests that roughly one-third of informal caregivers rate their health as either fair or poor, which indicates that informal caregivers are at higher risk for mortality due to experiencing physical strain (APA, 2016 NFCSP, 2000). Moreover, biomarker research demonstrates that informal caregivers may experience impairment in the endocrine and immune systems (APA, 2016). A decline in informal caregiver health may be the result of experiencing stress while assisting the recipient or experiencing bereavement or sadness of observing a significant other decline in health (Brown et al., 2009). For example, poor physical health may result from engaging in physical exertion that may create physical pain attributable to straining muscles or experiencing arthritis (Pinquart Sorensen, 2007 Shaw et al., 1997). An informal caregiver may even stop engaging in exercise or eating healthy by reason of decreased leisure time. In addition, informal caregivers likely experience a decreased amount of sleep by cause of fulfilling caregiving responsibilities as well personal tasks (Pinquart Sorensen, 2007 Shaw et al., 1997 Smith, 2015). Informal caregivers tend to be exceedingly alert and prepared in case of emergencies, which tends to trigger fatigue for caregivers (Smith, 2015). Furthermore, informal caregivers are at risk for accidental injuries (APA, 2016). Possible injuries can range from mild to severe and may include falls, cuts, and bruises (APA, 2016). Overall, informal caregivers are at an increased risk for experiencing physical stressors that may have an impact on their ability to complete caregiver responsibilities. Supportive interventions are needed to be put into place to assist caregivers in managing physical challenges. Financial stressors. According to the SUPPORT study (1994), researchers estimated that one-fifth of families terminates their career or engage in a significant life change to meet the demands of caring for an ill family member (Covinsky, Goldman, Cook, 1994). Over time, research has indicated that 12 of informal caregivers terminate their employment, while 55 decrease the amount of work hours (Smith, 2015). Research suggested that 50 of informal caregivers find it necessary to alter their work schedule, such as leaving or starting early, and having to call off in times of emergencies (Fast, Williamson, Keating, 1999). Approximately one-third reported they lost their life savings due to the financial burden of being an informal caregiver (Covinsky et al., 1994). Researchers proposed that informal caregivers of high socio-economic status (SES) experience less financial stressors considering increased accessibility of health care (Brodaty et al., 2005). On the other hand, the literature does pose inconsistencies regarding educational degree and caregiver health (Beach, Schulz, Yee, Jackson, 2000 Navaie-Waliser et al., 2002 Riemsma et al., 1999). Overall, certain research says less education correlates with better informal caregiver health whereas other research says more education correlates with better informal caregiver health. Research on informal caregiving is required to focus on what possible interventions and support can decrease the various types of stressors they may experience. Research consistently demonstrates that informal caregivers experience poor health, creating severe risks for effectively caring for the patient (Navaie-Waliser et al., 2002). The care recipient may experience negative effects from the caregiver such as lack of effective care and require institutionalization for valuable care (McCann, Hebert, Bienias, Morris, Evans, 2004 Navaie-Waliser, et al., 2002). By reducing these stressors for informal caregivers, the patient can be provided with more beneficial treatment, while not causing harm to their care provider. Positive aspects of being an informal caregiver. While research suggests informal caregivers experience numerous amounts of stressors, informal caregivers also report experiencing rewards for taking care of someone (Smith, 2015). Research indicates that approximately 55 and 90 of informal caregivers report encountering positive experiences (Sanders, 2005). Although, caregiving can become challenging at times, maintaining the commitment to take care of another person may provide the informal caregiver with a sense of pride (Nolan, Grant, Keady, 1996). For instance, some spouses believe caregiving is a duty they committed themselves to fulfill and is a sign and demonstration of love (Smith, 2015). Thus, partners may become closer and be reminded of the commitment they have for one another. Informal caregivers may additionally experience an increased self-esteem and confidence due to learning and mastering new skills (Smith, 2015). Informal caregivers are able to learn new abilities by providing the recipient with assistance in ADLs (Nolan et al., 1996). Therefore, informal caregivers may begin to feel competent in mastering tasks (Nolan et al., 1996). Fulfilling the recipients needs that he/she is unable do on his/her own, may allow the informal caregiver to feel appreciated (Nolan et al., 1996). In terms of providing care for a parent, research indicates that informal caregivers may feel a level of satisfaction and accomplishment as they complete tasks for their parents who once took care of them (Smith, 2015). Lastly, if there are multiple children taking care of a parent, the siblings relationships may become stronger as well as a result of working together for a common goal (Smith, 2015). Overall, Nolan and fellow researchers (1996) suggest there are three main aspects of satisfaction that contribute to positive aspects of caregiving. Specifically, experiencing appreciation and happiness providing care and good deeds to an individual in need promotes pride in developing positive interpersonal relationships (Nolan et al., 1996). Also, an informal caregiver experiences satisfaction because the role provides meaning and fulfillment in ones life creating movement toward the value of helping and caring for others (Nolan et al., 1996). Lastly, believing that ones informal caregiver role is providing the ultimate and best care to the recipient prevent the recipient from experiencing harm or danger (Nolan et al., 1996). Informal caregivers may also experience positive aspects of taking on the role of a caregiver that can enhance and motivate their ability to fulfill their duties effectively. In sum, the need of informal caregivers is increasing in the US due to the increase in life expectancy. Informal caregivers are gaining several additional responsibilities as a result of taking care of themselves as well as a significant other. Stressors, physical and psychological, are likely to occur for caregivers and impact their abilities to function daily in a healthy and productive way. Research indicates that caregivers can engage in behaviors to improve their lives (Stringer, 2017). Making significant life decisions about the recipient of care can become challenging and stressful. The caregiver can experience burden or guilt about making the moral and right decision. Therefore, a caregiver support intervention called REACH (Resources for Enhancing Alzheimers Caregiver Health) assists caregivers in actively problem solving when faced with complex issues (Stringer, 2017). Furthermore, communicating with ones family can assist a caregiver in stating what kind of help they may need as well as receiving emotional support (Stringer, 2017). Zarit (2014) indicates that family involvement and support decrease depressive symptoms for the caregiver. Utilizing regular respite has also shown to decrease stress, anger, and depression for caregivers (Zarit, 2014). For example, a caregiver can use adult day services or other caregivers to assist in completing everyday tasks. Moreover, the caregiver and recipient of care can engage in an activity, hobby, or creative intervention to develop a sense of meaning and create a strong bond (Stringer, 2017). Overall, gaining awareness of a caregivers satisfaction with their personal well-being and daily life can assist researchers in developing effective and meaningful interventions for caregivers. Informal Caregiving in PD in General Caregiver burden (CB) refers to the physical, psychological, and social stressors a caregiver experiences due to caring for a patient with a severely persistent disease (Martinez-Martin et al., 2007). Further, research proposes that CB evolves as a result of taking care of a patient with a chronic illness, such as PD (Martinez-Martin et al., 2007). Although PD symptoms can be provisionally managed with medication, health and cognitive deterioration is inevitable (Martinez-Martin et al., 2008). Informal caregivers become responsible for the patients physical, emotional, and financial support system, which in turns elicits the patient to become significantly dependent on the caregiver (Martinez-Martin et al., 2008). Due to a patient with PD requiring assistance in the majority of his/her daily routine, informal caregivers are highly susceptible to experiencing difficulties in multiple parts of life (Fernandez, Tabamo, David, Friedman, 2001 Thommessen et al., 2002). Possible factors that contribute to CB with PD includes an informal caregivers inability to manage the patients symptoms, level of severity of the patient, inability to control the progression of PD, and decreased support system (McRae, Sherry, Roper, 1999). Specifically, researchers propose that the wear-and-tear hypothesis contributes to CB becoming worse as the patients health slowly worsens (Keen, Reid, Prokos, 2008 Townsend, Noelker, Deimling, Bass, 1989). The hypothesis proposes that an informal caregiver begins to experience a decline in his/her own personal well-being as the patients functioning worsens (Fernandez et al., 2002 Thommessen et al., 2002). Due to PDs gradual and varied progression, there is often unpredictability in the mental and physical state of the patient. Thus, informal caregivers tend to experience a decreased level of control, which contributes to their distress (Edwards Ruettiger, 2002). Overall, research suggests that informal caregivers for PD patients experience an immense amount of negative consequences regarding physical, psychological, and social factors (Clarke, Zobkiw, Gullaksen, 1994 OReily, Finnan, Smith, Ben-Shlomo 1996). Informal Caregiver Responsibilities for PD McLaughlin and colleagues completed a literature review to highlight the experiences of caregivers of PD (McLaughlin et al., 2011). Caregivers reported providing several types of support for the patient with PD. Caregivers perform tasks that involve feeding, bathing, and dressing the recipient of care (McLaughlin et al., 2011 Smith, 2015). Also, caregivers report managing and organizing the patients financial responsibilities, medications, and transportation to numerous places such as medical appointments or grocery shopping (McLaughlin et al., 2011). Furthermore, caregivers reported taking on the tasks that the patient once took part in such as gardening and driving (McLaughlin et al., 2011). Caregivers reported that as the patients functioning declined, his/her dependency onto the caregiver greatly increased resulting in the responsibilities and tasks becoming more burdensome (McLaughlin et al., 2011). Negative Effects of Informal Caregiving in PD Physical consequences. Physical consequences of providing long term aide to someone with a chronic illness impacts a caregivers ability to achieve caregiving and personal tasks (Schulz Sherwood, 2008). For example, particular impaired physical behaviors of caregivers that occur include maintaining a healthy diet, exercising regularly, and attending medical appointments (Schulz Sherwood, 2008). Also, a large percentage of caregivers for PD experience hypertension, increased stress hormones, and a weakened immune system (Ali Ward, 2011). Experiencing negative physical consequences interferes with a caregiver being able to complete caregivers duties, which impacts the recipient of cares wellbeing. Also, a caregiver becomes susceptible to experiencing illness and bodily impairment. Research indicates that physical burden amongst caregivers of PD can be predicted by the patients disease severity and the level of care that is needed (Edwards Ruettiger, 2002). Therefore, as a patients health deteriorates, so does the caregivers. Psychological consequences. There is evidence that psychological consequences are the most troublesome for caregivers of PD on a daily basis (DAmelio et al., 2009 Wressle, Engstrand, Granerus, 2007). Informal caregivers of PD experience increased symptoms of depression, fatigue, sadness, and decreased QoL compared to non-informal caregivers (Aarsland, Larsen, Karlsen, Lim, Tandberg, 1999). Informal caregivers also express experiencing fear of the inability to care for the recipient as a result of becoming older in age and their own risk for morbidity and disease (Wressle et al., 2007). Moreover, informal caregivers report feelings of guilt and insecurity due to the inability to engage in a social life and enjoy leisure time to oneself (Mott, Kenrick, Dixon , Bird, 2005). Thus, feelings of loneliness are also commonly reported by informal caregivers as well (Mott et al., 2005). Research also indicates that informal caregivers for PD tend to experience confusion and helplessness as a result of experiencing time pressures, concern regarding the future, and decrease of knowledge regarding PD (Mott et al., 2005). Additionally, predictors of a caregivers psychological burden depended on the patients level of severity of cognitive and motor functioning, degree of agitation, and presence of delusions (Aarsland et al., 1999). Caregivers of PD commonly experience anxious symptoms due to experiencing sleep disturbances and lack of psychoeducation regarding effective interventions (DAmelio et al., 2009 ACampo, Spliethoff-Kamminga, Macht, Roos, EduPark Consortium, 2010). Physical impairment, apathy, and impulsive behaviors of the patient are also strong indicators of caregivers experiencing depression (Leroi et al., 2012 Schulz et al., 1995). In addition, a caregiver is more likely to experience symptoms of anxiety and depression when the patient is experiencing those symptoms (Schulz et al., 1995). Overall, anxiety and depression is related to both the disease severity and disease duration of the recipient of care (Wressle et al., 2007). Feelings of anger and irritation are also common to occur for informal caregivers because of their increased amount of responsibilities and increase of psychological turmoil (Mott et al., 2005). Psychological consequences can significantly influence a caregivers ability to function and perform tasks for their own health as well as the patients. Social consequences. Caregivers experience social consequences by reason of decreased accessibility of their support system, negative interpersonal relationships, and lack of encouragement for their help (Edwards Ruettiger, 2002). Caregivers reported experiencing social isolation as a result of their decreased amount of leisure time and energy (McCabe, Roberts, Firth, 2008 Tan, Williams, Morris, 2012). Due to demanding physical and emotional responsibilities, caregivers reported greatly decreasing their contact with their supportive network because of feeling overwhelmed and exhausted (OReilly et al., 1996). Researchers examined the social effects of caregiving for PD and indicated that caregivers reported leaving their household roughly one day a week (OReilly et al., 1996). Therefore, results indicate that due to caregivers complex and challenging responsibilities, they have limited time to engage in their social environment that can provide beneficial support. However, a caregivers satisfaction with their supportive system has been shown to decrease stress (Miller, Berrios, Politynska, 1996). Thus, a positive and available social support network can immensely decrease CB. Caregivers, to maintain a healthy demeanor, need to regularly engage with their supportive network. Informal Caregivers of PD Needs While there are, significant negative factors experienced by caregivers for PD patients, approximately only 1 of published papers focus on CB in PD in the US (Pasetti et al., 2003). Pasetti and colleagues (2003) completed a study identifying the needs of caregivers of PD. The results indicate that informal caregivers require knowledge regarding the etiology and symptoms of the disease. In addition, informal caregivers require support and education in incorporating their roles and responsibilities that existed prior to becoming an informal caregiver. Moreover, the results indicate caregivers need a supportive atmosphere to share and compare their situation with others experiencing similar experiences and feelings (Pasetti et al., 2003). The researchers indicate caregivers also reported a need for spirituality, they need to have a higher being in which to place their acceptance, trust, and hope in (Pasetti et al., 2003). Caregivers of PD are in need of multiple resources to assist them in their ability to function as a caregiver in a healthy and productive way. Currently, PD caregivers perspectives and needs are vastly overlooked in current research (Weintraub, Comella, Horn, 2008). Researchers have highlighted the significant impact Alzheimers disease (AD) has on caregivers due to affecting 5.5 million individuals and being the 6th leading cause of the death in the US It has been suggested that the CB is similar to caregivers of PD considering both being chronic and neurodegenerative diseases with a typical late-onset occurring after the age of 50 (Caap-Ahlgren, 2002 Clyburn, Stones, Hadjistavropoulos, Tukko, 2000 Donaldson Burns, 1999). Overall, both PD and AD caregivers experience emotional, physical, and financial distress as a result of taking care of patients. However, the immense amount of research that has examined the impact of AD on caregivers cannot be applied to caregivers of PD due to the vast differences in clinical and pathological features (Chang, 2017). AD is primarily a memory disorder that involves damage to the hippocampus and the entorhinal cortex, which involves learning, memory, and emotion functioning (Braak Braak, 1995 Tokuchi et al., 2016). The neurotransmitter acetylcholine is progressively diminished over the course of the disease, which worsens memory and intellect (Tabet, 2006). Cholinesterase inhibitors have been shown to be effective in slowing cognitive decline by preventing the breakdown of acetylcholine (Kidd, 2008). AD rarely involves types of movement impairments, while PD caregivers experience a physical strain of having to assist the patients with physical mobility and coordination (Chang, 2017 Tokuchi et al., 2016). The immobility and difficulty with coordination of a patient with PD creates physical and emotional exhaustion on the part of the caregiver. A caregiver of AD, on the other hand, tends to spend more time assisting the patient with memory difficulty (Avila, 2004). For example, they likely assist the patient with AD in remembering daily tasks, individuals names, or paying bills (Avila, 2004). Overall, informal caregivers experience extensive physical and mental exhaustion as a result of undergoing significant lifestyle changes in terms of daily responsibilities (Weintraub et al., 2008). Nevertheless, researchers indicate that empirical evidence has not focused enough attention on caregiving in PD (Sanders-Dewey, Mullins, Chaney, 2001). For example, McLaughlin and colleagues (2011) conducted a literature review on the perceptions of informal caregivers living and coping with PD. The results of the study were consistent with past research in suggesting that caregivers of PD have a diminished amount of societal support and lack of awareness in researching and accessing helpful information. Further, the researchers indicated that caregivers of PD reported the inability to prepare and receive guidance for their ongoing role (McLaughlin et al., 2011). Thus, the research indicates that there is a lack of sensitivity from professionals towards the specialized role and functioning of an informal caregiver (McLaughlin et al., 2011). Additionally, the lack of consideration towards an informal caregivers cultural differences negatively impacts the effectiveness of caregiver support. Specifically, in 2014, a literature review that examined the burden of caregivers for individuals with PD indicated there is a gap within the literature in terms of considering race/ethnicity, education, and socioeconomic facts that contribute to CB with PD (Bhimani, 2014). Overall, most informal caregivers are not given the appropriate tools or knowledge towards physical or psychosocial constraints that occur. In addition, Bhimani (2014) recognized that there is a significant lack of examining male caregivers and their role with a patient of PD. Thus, there are several unanswered questions regarding cultural, social, and education differences amongst the caregiving population of PD. Overall, informal caregivers for PD need a significant about of assistance and support that addresses how cultural differences significantly impact their overall health and wellbeing. Research suggests that informal caregivers for PD needs can be met by professionals gaining awareness of how social, cultural, and racial disparities influence the caregiving experience across various cultures (Connell Gibson, 1997). Also, taking into consideration cultural barriers that exist in diverse environments such as insufficient transportation, lack of knowledge regarding services, financial aspect of services, language barriers, and lack of culturally-sensitive services can bridge the gap between cultural differences and caregivers needs (Damskey, 2000 Mui, 2002 Toseland, McCallion, Gerber, and Banks, 2002). Nonetheless, a minimal amount of information is known regarding informal caregivers for PD own experiences and viewpoints based on their cultural traditions and perspectives (Scharlach et al., 2006). Therefore, informal caregivers for PD require professionals to acquire knowledge and understanding regarding the impact of cultural norms, social expectations, and traditional roles on the caregiver experience to provide the most effective and beneficial care (Scharlach et al., 2006). Importance of Multicultural Competence As a result of the increase of ethnic or racial minority populations in the US, the American Psychological Association (APA) recognizes that multicultural competence is necessary to meet the various needs of the communities (Sue, Zane, Hall, Berger, 2009). Research indicates that ethnic minorities are significantly limited in their accessibility to healthcare compared to Caucasian Americans (General, 2001). Further, for ethnic minorities could access healthcare, care was viewed as extremely poor (Pole, Gone, Kulkarni, 2008 Sue, 1998). In addition, there has been a need for educational organizations, employers, government agencies, and other professionals to be competent in responding to diverse populations (Kaslow, 2004). The need to improve healthcare, as a result of an increase in cultural diversity, has triggered the movement towards multicultural competence for mental health professionals. Multiculturalism refers to characteristics of an individuals identity produced from beliefs, values, ethnicity, race, sexual orientation, gender, age, socioeconomic status, and language (US Department of Health and Human Services Office of Minority Health, 2008). An individuals identity is composed of these characteristics, which encourages psychologists to become knowledgeable and aware of the concerns clients may experience as a result their cultural identity (APA, 2010b). Data collected from the 2000 Census stresses that most individuals are reporting two or more races, which signifies that the US is becoming more racially and ethnically diverse (APA, 2010 Jones Smith, 2001). Therefore, the urgency for multicultural competence to promote effective care and interventions for each diverse population is increasing (APA, 2010 US Department of Health and Human Services, 2001). The American Psychological Associations 2010 Ethics code established guidelines regarding multicultural competency to assists psychologists in serving diverse populations. The guidelines are founded on the fact that the US is racially and ethnically diverse, which means that students, clients, professionals, participants of research are from diverse backgrounds. Therefore, professionals must gain skills necessary to effectively provide services to various groups of individuals. Overall, the guidelines were produced to assists psychologists in gaining the skills and knowledge to achieve necessary education, training, and research of diverse populations. APA indicates that justice must be provided to all individuals who interact with professionals in the field of psychology. A guiding principle of their Ethics Code, Principle D – Justice, plays an important role in stating that all professionals must acknowledge that each person is treated with equality and fairness in every service that is provided (Sue et al., 2009). Further, the principle states that each professional must use accurate judgement and be mindful of personal biases that may interfere with treatment as well as boundaries of competence with each client (Sue et al., 2009). Another principle, Principle E – Respect for Peoples Rights and Dignity of the American Psychological Association, emphasizes the importance of multicultural competence by indicating Psychologists are aware of and respect cultural, individual and role differences, including those based on age, gender, gender identity, race, ethnicity, culture, national origin, religion, sexual orientation, disability, language, and socioeconomic status, and consider these factors when working with members of such groups. Psychologists try to eliminate the effect on their work of biases based on those factors, and they do not knowingly participate in or condone activities based upon such prejudices. (APA, 2010a). Cultural competence is an ethical obligation for each professional to uphold throughout his or her practice of psychology. Psychologists must understand the importance of diversity amongst clients to work with them in an effective and proficient manner. Providing the most beneficial treatment to members of particular cultures can only be achieved by possessing cultural knowledge and skills according to Sue (2006). Sue (1998) perceives cultural competence as a multidimensional phenomenon that has three underlying features a) scientific mindedness, b) dynamic sizing, and c) culture-specific skills. A professional engages in scientific mindedness when they form hypotheses about the client and what treatment would be most effective based on their cultural differences and individuality (Sue, 1998). A professional has the skill to dismiss assumptions or stereotypes of groups, while recognizing the clients importance of cultural group membership (Sue, 1998). Professionals can also dynamically size their clients. This involves a professional distinguishing when to generalize a client to be inclusive or exclusive in particular groups based on their individual differences. Culture-specific skills refer to gaining the precise skills for each culture and gaining adequate knowledge about cultural differences (Sue, 1998). These three underlying mechanisms of multicultural competence assist professionals in achieving cultural competence by following a particular model or approach. A conceptual framework developed by Sue, Ivey, and Pedersen (1996) has been widely used amongst mental health providers to understand the required skills and knowledge needed to reach multicultural competence. Multicultural competence refers to acquiring knowledge about various cultures to provide the most efficient and beneficial interventions (Sue, 2006). The framework includes three main components cultural awareness and beliefs, cultural knowledge, and cultural skills (Sue, 2006). Cultural awareness and beliefs applies to a professionals response to a client and their therapeutic relationship being influenced by their own personal principles and biases (Sue, 2006). A professionals knowledge of a clients culture and how it affects their worldview alludes to the cultural knowledge component (Sue, 2006). Lastly, a professionals ability to use skills to intervene in cultural issues involving vulnerability refers to the cultural skills component (Sue, 2006). In general, the conceptual framework for reaching cultural competence results in vital positive outcomes. A professional is able to function competently in a democratic society by interacting and compromising for the wellbeing of diverse clients (Alvarez, Biggs, Chen, Pine, Grillon, 2008 Sue Torino, 2005). Also, a professional is able to provide effective empirically based interventions to various populations to obtain positive clinical outcomes (Sue, 1998). Further, the professional gains awareness about a clients worldview as a result of their cultural background and understands how their personal identity may have been formed by their cultural values (Dittman, 2003). A professional is able to distinguish societal norms in terms of stereotypes or generalizations about particular cultures (Dittman, 2003). Therefore, a professional is able to go beyond their clinical role and advocate for institutional change, while promoting spiritual awareness to clients as well as colleagues (Dittman, 2003). Multicultural Competence in Older Adults Geropsychology focuses on the mental, behavioral, societal, and genetic aspects of aging within the arena of psychology (Crowther et al., 2009). Researchers in the geropsychological field have recognized the importance of cultural competence in the older adult population due to rapid change in aging and the advancement in psychological science (APA, 2014). Currently, psychologists provide care within numerous clinical settings such as home and community-based settings, long-term care settings, and hospitals (APA, 2014). Researchers have continuously identified the unique factors that are required when providing services to older adults in various settings (APA, 2014). For instance, older adults, known as the baby boomers, are becoming more apparent within the field of Geropsychology. This group will hold different generational viewpoints considering the impact of experiencing and expressing health and emotional issues much differently than other cohorts in time (APA, 2014). Further, the demand for psychologists to achieve cultural competence within the older adult population will continuously increase due to the older population living longer and becoming more diverse (Karel, Gatz, Smyer, 2012). As such, the increase of the aging population challenges psychologists to continuously gain awareness and education regarding multicultural knowledge for older adults (Ortman, Velkoff, Hogan, 2014). To address the need for multicultural competence within the older adult population, APA Division 12-Section II produced The Guidelines for Psychological Practice with Older Adults. The purpose of these guidelines is to aid psychologists in assessing their own level of education and skills when working with older adults and seek the appropriate training and guidance to reach relevant knowledge (APA, 2014). Thus, twenty guidelines were formed to target various aspects of the older adult population such as attitudes, general knowledge of adult development, aging, clinical issues, assessment, intervention, and consultation. Overall, psychologists are provided a reference to utilize when working with older adults and foundational information and resources that are relative within this population (APA, 2014), Guideline 5 specifically targets the importance of diversity within older adults by stating Psychologists strive to understand diversity in the aging process, particularly how sociocultural factors such as gender, ethnicity, socioeconomic status, sexual orientation, disability status, and urban/rural residence may influence the experience and expression of health and of psychological problems in later life (APA, 2014, p. 242). Research consistently demonstrates that age is not overtly acknowledged as a characteristic of diversity (Crowther et al., 2009). Specifically, ageism influences cultural diversity factors within the older adult population in a variety of ways. The APA Resolution on Aging (2001) described ageism as prejudice toward, stereotyping of, and/or discrimination against any person or persons directly and solely as a function of their having attained a chronological age which the social group defines as old (Crowther et al., 2009, p. 12). Gordon Allports Social Categorization theory explains that discrimination results from human beings understanding their social world by creating two categorical groups, the in-group and an out group, to organize individuals who are similar and different from themselves. Thus, older adults are commonly placed in the out-group due to possessing different traits compared to the younger adult population (APA, 2009). For example, older adults are commonly perceived as lonesome, isolated, ill, frail, weak, dependent, sad, rigid, and restricted in their ability to cope with daily life (Crowther et al., 2009). Furthermore, psychologists may engage in professional ageism that can alter or affect the treatment goals and progress of older because of attitudes of pessimism or hopelessness (Kimmel Moody, 1990). Overall, professionals become influenced by underlying biases towards growing old and old age in general and experience doubt in older adults ability to progress and improve (Crowther et al., 2009). Therefore, ageism has the capability of negatively affecting a professionals ability to provide effective care and treatment towards older adults. As a result of the negative impact of ageism on mental health professionals, training programs in Geropsychology are significantly needed to increase multicultural competence within the older adult population. However, the acute shortage of professionals qualified to provide these training programs are scarce (Crowther et al., 2009). Because of this shortage and increase in the older adult population as well as racial and ethnic minority elders, these populations will not be provided with adequate, effective, or accessible services (Crowther et al, 2009). In sum, the older adult population is influenced by several diversity factors such as race and ethnicity, country of origin, religion, disability, age, gender, and sexual orientation. Thus, psychologists need to become qualified and competent concerning the diverse adult population to provide the most effective care (Crowther et al, 2009). In 2007, 35 million citizens of the US were 65 years and older, with 7 million reporting being part of the racial/ethnic minority group (US Census Bureau, 2007). The number of diverse older adults in the US is predicted to increase dramatically over the following years (NFCSP, 2008). For example, between 2007 and 2030, the Caucasian population of older adults will increase to 68 compared to 84 of older adult minorities, (NFCSP, 2008). Furthermore, by 2050 Hispanics/Latinos will be 30 of the US population and by 2019, Hispanics 65 years and older will be referred as the greatest minority group within the older adult cohort (Ortman et al., 2014). Older adults that are culturally diverse in America have shown to be at an increased risk for experiencing poor health, social isolation, and poverty (APA, 2009). For example, research indicates that 20 to 22 of older adults report experiencing a mental health disorder (APA, 2014). Thus, psychologists must require knowledge regarding particular factors that relate to diversity such as acculturation, native beliefs for curative or medical practices, discrimination, and social justice concerns (Ortman et al., 2014). Overall, research consistently demonstrates that psychologists abilities to meet the required demands of the older population in the upcoming years will not be met (Karel et al., 2012 Qualls, Segal, Norman, Niederehe, Gallagher-Thompson, 2002). Research indicates that psychologists that are within the geriatric field are not competently trained to provide services to the older adult population (Qualls et al., 2002). APA surveyed psychologists in the health service field in 2008 and found that 4.2 of providers reported older adults as their main population of focus, whereas 39 reported they currently provide services to older (Rozensky, 2011). In addition, psychologists reported they barely received proper training in older adults with less than one third of APA members reporting they did not receive a course in Geropsychology while in graduate studies (Qualls et al., 2002). Importance of Multicultural Competence as it relates to Informal Caregivers of PD Cross cultural psychology of aging. As a result of the global population aging, the field of cross-cultural psychology of aging has generated awareness of cross-cultural differences being dissimilar and distinct from ethnic and racial differences of aging (Jackson, Govia, Sellers, 2011). Specifically, the life-long socialization process proposes that cultural differences in aging occur when people from different cultural contexts learn different ways to become better members of their culture (Fung Jiang, 2016, p. 324). Further, as individuals become older, their behaviors and actions focus on advancing and improving their well-being (Fung Jiang, 2016). Overall, Fung and Jiang (2016) argue that there are three vital components that influence an individuals socioemotional development across adulthood in terms of socialization. First, human beings understand their life by adopting their cultural values (Fung Jiang, 2016). Thus, these adopted values develop into aims and objectives that direct an individuals adult development across time. Lastly, differences in aging exist amongst cultures due to human beings developing and adopting their distinctive cultural values with age (Fung Jiang, 2016). Overall, as individuals age they begin to internalize and adopt the expectations and demands of society, known as cultural learning (Bronfenbrenner, 1979 Berry 1997). Learning and seeking out knowledge of ones distinctive culture drastically impacts their personal values and moral judgement (Fung Jiang, 2016). Thus, an individuals priorities begin to shift to reach a fulfilled and meaningful life (Oishi, Diener, Lucas, Suh, 1999). Older adults attempt to understand life through internalizing their values based on their culture to achieve a satisfying life (Fung Jiang, 2016). While cultural learning occurs across adulthood universally, the internalization of values appears diverse by cause of differences amongst cultures and patterns of development (Fung Jiang, 2016). For example, researchers suggest that personality development is highly influenced due to an individuals culture demanding desirable and appropriate behavior, beliefs, and values (Fung Jiang, 2016). Overall, culture affects an individuals personal identity by influencing how they perceive and respond to their social environment. As a result of statistics demonstrating 22 of caregivers are over 50-years-old and the onset of PD is commonly 50-years-old, taking into consideration unique cultural factors of the older adult population across countries can increase multicultural competence within the age group and expand on what exclusive needs informal caregivers for PD require based on their distinctive cultural values and beliefs (NFCSP, 2000). Unique cultural factors to consider when working with diverse older adults include being sensitive to their communication styles, learning and implementing their language when expressing emotional states, and maintaining proper etiquette when forming a therapeutic relationship (Abramson, Trejo, Lai, 2002 Giles et al., 1992 Holtgraves, 1997 LaSala Nelson, 2005). Cultural differences within the older adult population may also present language barriers. Therefore, professionals must adopt nonverbal communication skills that relate to cultural groups such as understanding body language (i.e., eye contact, touching, body posture, and body movements) (Abramson et al., 2002). By considering these various aspects of an older adults culture, a professional can tailor interventions and treatment to the patient based on their individual differences, while being able to understand the patient through effective and efficient communication. In sum, psychologists must achieve multicultural competence in working with diverse cohorts of informal caregivers for PD across cultures because of the significant impact culture has on an individuals beliefs and values towards caring for an individual experiencing PD. Specifically, PD patients possess distinct social and ethnic traits that influence their daily life, which increases the need for mental health professionals to acquire accurate knowledge regarding various cultural groups. In addition, due to the complexity of PD and taking into consideration a patients individual characteristics, informal caregivers need to gain accurate knowledge regarding PDs disease process, skills to manage symptoms, and CB that relate to their specific cultural aspects (Bhimani, 2014). Thus, it is important to understand how various cultural factors contribute to CB with PD across cultures to assist in developing effective interventions for caregivers and addressing their needs and barriers of care based on their distinctive characteristics. Informal Caregiver Dynamics within Specific Cultures Informal caregivers across various cultures experience similar and different dynamics due to cross-cultural factors. Mahoney and colleagues (2005) compared racially and ethnically diversity amongst informal caregivers of AD. The findings suggested that Latinos, African Americans, and Chinese cohorts share cross-cultural similarities. For example, all three cohorts experienced lack of knowledge of AD and a need for improved communication from physicians (Mahoney, Cloutterbuck, Neary, Zhan, 2005). Furthermore, the commonality of being given the diagnosis by a predominantly Caucasian physician grounded in his or her own culture, created a communication concern for the caregivers (Mahoney et al., 2005). Specifically, the research indicated that within the Chinese cohort, the caregivers reported a concern regarding public disclosure of the disease as a result of shame (Mahoney et al., 2005). Another study explored the impact of culture and acculturation for older adult informal caregivers for an individual with a developmental disability (McCallion, Janicki, Grant-Griffin, 1997). The participants were immigrants and citizens born in the US from cultural groups of South Korea and Haiti. The research indicates that various cultural barriers were reported in both groups such as unwillingness to receive nontraditional services from a provider outside of the family, language difficulty, and lack of knowledge about available services (McCallion et al., 1997). Furthermore, language appeared to be the most significant barrier for caregivers as a result of the inability to communicate their needs, learn knowledge about services, and establish a trusting relationship with medical providers (McCallion et al., 1997). In addition, a study compared the role of informal caregiving of dementia in the US and Japan (Wallhagen Yamamoto-Mitani, 2006). The research indicates that informal caregivers in Japan experience a moral obligation to engage in the caregiver role (Wallhagen Yamamoto-Mitani, 2006). In Japan, the role of caregiving is profoundly established within society, while the designated caregiver being a daughter-in-law or unmarried daughters. In general, caregiving roles are praised and recognized within society with a sense of self-worth and pride for the caregivers (Wallhagen Yamamoto-Mitani, 2006). Americans appeared to lack this moral obligation and socialization to engage in a caregiving role and viewed being a caregiver as an unexpected career (Aneshensel, Pearlin, Mullan, Zarit, Whitlatch, 1995 Wallhagen Yamamoto-Mitani, 2006). Thus, Americans viewed caregiving as an impediment in their daily life. Moreover, researchers examined the cultural context of caregiving in China. The research indicates that societal norms within the Chinese culture involve assigning the primary responsibility of caring for impaired elders amongst the family members (Yu et al., 1993). The caregivers are most likely children or in-laws and view the need and dependency of a caregiver as expected behavior of the normal process of aging (Yu et al., 1993). Specifically, researchers examined caregiving in Shanghai, China for AD and indicate that caregivers experienced an increase in depressive symptoms and a decrease of emotional support as a result of taking care of the patients ADLs (Patterson et al., 1998). Further, Aggarwal and colleagues (2011) examined informal caregivers of schizophrenia in India. Informal caregivers within the Indian society view their role as traditional and part of the family dynamics. Therefore, caregivers in India view their role as an ethical obligation to care for their family members that become ill (Aggarwal, Avasthi, Kumar, Grover, 2011). In terms of caring for a relative diagnosed with schizophrenia, the research indicates that the average primary caregiver was male, married, and employed (Aggarwal et al., 2011). The caregivers reported requiring additional support from other family members, increased stress due to the severity of the recipient of cares impairment, lack of social support, and limited knowledge regarding coping strategies (Aggarwal et al., 2011). Moreover, informal caregivers of stroke victims in Australia reported experiencing poor emotional health (i.e., fatigue, stress, guilt, and depression), interference in their social life, and extreme reduction in their leisure or relaxation time as a result of caregiving responsibilities (Anderson, Linto, Stewart-Wynne, 1995). Also, the caregivers reported experiencing fear and anxiety regarding the recipient of care being alone, becoming more disabled, or dying. Thus, caregivers in Australia reported engaging in overprotection to decrease feelings of guilt (Anderson et al., 1995). Informal caregivers in sub-Saharan Africa take on an enormous amount of responsibilities due to the increased numbers of individuals diagnosed with Acquired Immune Deficiency Syndrome (AIDS) (Kipp, Tindyebwa, Karamagi, Rubaale, 2013). In sub Saharan Africa, the primary caregivers are known to be the women of the family (McCutchan, 1996). The women ensure the familys general health is strong, maintain food security, care for the well-being of the children, and manage when resources may become limited (Kipp et al., 2013). In terms of caring for AIDS, caregivers experience stigma within the African society as a result of having a family member diagnosed with a chronic and deadly illness. Thus, the family tends to experience social isolation and loneliness, which increases the overall stress of the caregiver (Kipp et al., 2013). In addition, the caregivers report an extreme lack of access to health care and live within inadequate and poor home conditions (Kipp et a., 2013). Culture and ethnicity are significantly difficult to generalize to an entire population due to genetic diversity increasing within a multicultural society (Mahoney et al., 2005). Various countries around the world experience distinct cultural differences that contribute to a persons cultural identity. Therefore, it is crucial to gain information regarding a specific disease, such as PD, across cultures to truly understand the diseases perplexity as it relates to culture. In addition, understanding the influence of culture can assist in understanding how informal caregivers overall role and well-being are affected by culture as well. Thus, the importance of understanding how ones cultural heritage, involvement in cultural organizations, and practice of traditions can enhance the support and services available to informal caregivers (McCallion et al., 1997). Overall, research needs to expand on information about cultural preferences for informal caregivers to increase cultural sensitivity and competent care from medical health providers, which can also improve care for the recipient. Past Research of Informal Caregivers of AD and Multicultural Competence Due to AD ranked as the 6th leading cause of death in the US, with an estimated 5.4 million individuals in the US is diagnosed with AD, it has been immensely researched in terms of caregiving support (Alzheimers Association, 2011 Heron, 2012). In addition, AD and PD are both chronic and progressive diseases that impact older adults across cultures. Thus, while the focus is on informal caregiving of PD, evidenced based research on AD and informal caregiving can contribute to the minimal research completed on PD and informal caregiving. Further, researchers have developed multicultural competent skills to focus on caregivers of AD in diverse populations. For example, past research with caregivers of AD contributes to the literature by highlighting the significant influence multicultural competence has on developing effective caregiver interventions. Chaudhuri and Das (2006) investigated the role of caregivers in the management of AD specifically in Asian countries. Researchers suggest that caregivers of AD in the majority of Asian countries are not given support of any kind. Therefore, utilizing teamwork and adaptability amongst researchers, clinicians, health care staff, and health policy makers can develop the support caregivers of AD in Asian countries require to function effectively. Furthermore, other research suggests that caregivers of AD or dementia in Japan reported significantly poorer QoL increased risk of comorbidity, impairment in productivity, and limited use of resources (Goren, Montgomery, Kahle-Wrobleski, Nakamura, Ueda, 2016). As a result, there is an immense need for support for caregivers of AD in Japan as well (Goren et al., 2016). Other research regarding caregivers of AD consistently demonstrates that in France, Germany, and the United Kingdom (UK) caregivers experienced increased burden due to the AD patient exhibiting behavioral problems and difficulty functioning in ADLs. Therefore, the researchers suggest that therapeutic techniques that decrease behavioral symptoms and improve functioning in an AD patient can alleviate symptoms as well as decrease CB for caregivers in the countries of France, Germany, and the UK (Reed et al., 2014). Overall, therapeutic interventions become more effective when on a particular populations needs is taken into consideration. Providing clinical services to different cultural backgrounds has the potential to influence or trigger clinicians biases or misinterpretations regarding various diverse cohorts. The National Alzheimers Association Associate Director of Diversity and Inclusion Outreach provided significant information regarding cultural sensitivity toward care for dementia (Brewer, 2017). Self-awareness is key in understanding how an individuals own culture influences their thoughts and behaviors. Self-awareness allows professionals to dismiss stereotypes or underlying feelings regarding a particular person based on their cultural differences (Brewer, 2017). Understanding cultural differences allows professionals to dismiss misjudging others behaviors or cultural traits as a result of learned expectations (Brewer, 2017). Familiarity with cultural knowledge provides the ability to adapt interventions and services to consider diversity between cultures and consider individual preferences (Brewer, 2017). In addition, research suggests that diversity assessments can assist in building staff resources and increase responsiveness to challenges regarding cultural groups. In sum, research has vastly examined cultural differences across informal caregivers of patients with AD. However, there is a dearth of research focused on caregivers of patients with PD across cultures. PD and AD share commonalities regarding diseases such as being chronic, neurogenerative, and progressive diseases, onset is typically in adults 50 years and older, and impact the central nervous system. Thus, research that has examined informal caregivers of AD across cultures can be considered to contribute to similar CB with PD. Nevertheless, AD and PD also differ in terms of primary symptoms, regions of the brain affected, and treatment modalities available. Overall, there is a significant need to examine cultural differences for informal caregivers of patients with PD specifically. As older adults live longer, they will experience more severe and chronic medical conditions and require more care (National Center for Health Statistics, 1999). Therefore, the need for informal caregivers will continue to increase and become more complex and challenging. Specifically, PD currently remains a prevalent and complex disease that requires informal caregivers to significantly assist with symptom management and improved functioning as a result of it being a progressive disease. Research consistently demonstrates that cultural differences across cultures play a significant role in an informal caregivers overall role and physical and mental wellbeing. Understanding CB across cultures provides the necessary skills to work with various informal caregivers for PD. Thus, psychologists need to have a foundational basis regarding the impact of cultural aspects to be able to understand what CB looks like across cultures to provide the most accurate and beneficial support for informal caregivers for PD. Rationale and Purpose for Current Study PD is a progressive neurological disorder that encompasses a vast amount of motor and non-motor characteristics, which impairs a persons ability to function daily (Jankovic, 2008). PD has been recognized as a serious health concern. It is the 14th leading cause of death in the US with symptoms requiring years to fully develop (Keller et al., 2012). Individuals diagnosed with PD experience mental and cognitive deterioration that is inevitable (Martinez-Martin et al., 2008). As a result, there is a substantial need for informal caregivers to assist the patient in physical, emotional, and financial needs (Martinez-Martin et al., 2008). Because of gaining numerous responsibilities of the recipient of care, research suggests that informal caregivers develop caregiver burden (CB) (Martinez-Martin et al., 2007). CB refers to the various stressors a caregiver experiences due to caring for a patient with a severely persistent disease (Martinez-Martin et al., 2007). Research indicates that caregivers require knowledge regarding the etiology and symptoms of the disease and incorporate their distinct characteristics as a caregiver (Pasetti et al., 2003). Moreover, the need to improve healthcare within the field of clinical psychology, as a result of an increase in cultural diversity, has encouraged mental health professionals towards achieving multicultural competence. Multiculturalism refers to characteristics of an individuals identity produced from beliefs, values, ethnicity, race, sexual orientation, gender, age, socioeconomic status, and language (OMH, 2009). Further, the demand for psychologists to achieve cultural competence within the older adult population will continuously increase due to individuals living longer and the population becoming more diverse (Karel et al., 2012). Thus, taking into consideration unique cultural factors of older adults across countries can increase multicultural competence and expand on what needs informal caregivers for PD require based on their distinctive cultural values and beliefs. Nevertheless, the influence of culture and ethnicity is difficult to generalize to an entire population as a result of diversity continually increasing within society (Mahoney et al., 2005). Various countries around the world experience distinct cultural differences that contribute to a persons cultural identity. Therefore, considering the unique cultural factors of older adults across countries can increase multicultural competence and expand on what needs informal caregivers for PD require based on their distinctive cultural values and beliefs (NFCSP, 2000). Moreover, numerous medical and mental health disorders have been examined regarding CB with PD (i.e., AD, dementia, developmental disabilities, stroke, schizophrenia) across various cultures such as Africa, India, Australia, and Italy. Therefore, it is crucial to gain information regarding a specific disease, such as PD, across cultures to truly understand the diseases perplexity as it relates to culture. Specifically, it is important to understand how various cultural factors contribute to CB with PD across cultures to assist in improving support and effective interventions for informal caregivers in need. A systematic literature review fills in the gap between the extensive and dispersed assortment of articles focused on a topic (Baumeister Leary, 1997). To date, a literature review has not been completed that systematically examines the caregiving experience for informal caregivers of individuals with PD in various countries. Thus, a systematic literature review examining informal caregivers for individuals with PD across cultures is important to carry out to expose areas of limited research and to establish a strong foundation regarding this topic. Further, a literature review focused on CB of informal caregivers for individuals with PD provides an integrative understanding of PD and informal caregivers cross culturally to facilitate the development of theoretical approaches and future interventions. As such, the purpose of the current research is to examine the impact on informal caregivers for individuals with PD across different countries as it relates to CB. Specifically, this literature review systematically examined the shared and unique factors that appear to contribute to informal CB with PD across cultures. This literature review also examined the shared and unique factors of CB that impact an informal caregivers QoL across countries. Further, this literature review examined the shared and unique factors of CB impacted by the severity of a patients symptoms of PD. Lastly this literature review examined the shared and unique factors of CB impacted by the mobility of a patient with PD across countries. Research Questions What factors contribute to informal CB with PD across various countries reviewed What shared factors appear to contribute to informal CB with PD across various countries reviewed What unique factors appear to contribute to informal CB with PD across various countries reviewed Does informal CB impact the QoL of informal caregivers for individuals with PD across countries reviewed Which countries appear to have shared factors of CB with PD impacting QoL Which countries appear to have unique factors of CB with PD impacting QoL Does the severity of a patients symptoms of PD (i.e., depression, psychosis, executive functioning, and physical impairment) impact informal CB across countries reviewed Which countries appear to have shared factors of CB impacted by the severity of a patients symptoms of PD Which countries appear to have unique factors of CB impacted by the severity of a patients symptoms of PD Does the mobility of a patient with PD impact informal CB across countries reviewed Which countries appear to have shared factors of CB impacted by the mobility of a PD patient Which countries appear to have unique factors of CB impacted by the mobility of a PD patient Chapter II Method A review of the literature was conducted to examine the impact of PD for informal caregivers across various countries. According to Webster and Watson (2002), a valuable and successful literature review enhances knowledge and learning by possessing a strong foundation. Literature reviews facilitate the development of theoretical approaches and exposes areas of limited research by combining results of various studies on a particular topic (Baumeister, 2013 Webster Watson, 2002). In general, literature reviews fill in the gap between the extensive and dispersed assortment of articles focused on a topic (Baumeister Leary, 1997). Overall, a literature review identifies with four main outcomes, assessing the present research that exists on a given topic, recognizes expert knowledge on a given topic, identifies vital questions required for the expansion of future research, and establishes the methodologies used within past empirical studies (Atilano, 2017). Therefore, literature reviews are significantly unique from other studies and provide an integrative understanding of a specific topic. In addition, literature reviews are regarded as more effective due to single studies being affected by specific errors such as research subjectivity, external validity, and experimenter bias (Willis, 2014). Thus, a literature review removes the possibility of errors to occur, which create more reassuring results by reason of utilizing several studies that focus on a mutual topic and conclusion (Cooper, 1988). This literature review is organized in a systematic narrative format instead of a meta-analysis due to including several studies with a variability of research designs and questions (Baumeister, 2013). A meta-analysis utilizes research strategies that combine results of several studies that have the same methodology to attend to the same research question (Baumeister, 2013). Therefore, a systematic narrative format was the appropriate type of review to use based on the particular appropriate format. The studies included within the review were mainly located through the use of literature research databases. The databases that were investigated through EBSCO Host include PsychArticles, PsychInfo, Ageline, Pubmed, and CINAHL, Medline Complete. The key and MeSH terms that were searched included Parkinsons Disease and Caregiving, Parkinsons Disease and Caregiving Burden, Parkinsons Disease and Caregiver, Parkinsons Disease, Caregiving, and Countries, Parkinsons Disease, Parkinsonian Disorders, and Caregiver, Parkinsons Disease, Caregivers, and Cost of illness, Parkinsons Disease, Caregiving, and Quality of Life, Parkinsons Disease, Caregiving, Caregiver Burden, Caretaker, and Parkinson, Parkinsons Disease, Caregiving, and Severity, Culture and Ethnicity, Parkinsons Disease, Caregiving, and Impairment. The inclusion criteria for the studies in this literature review were those that investigated the impact on informal caregiving of PD across various countries. Specifically, studies that investigated informal CB with PD across countries, informal caregivers for PD QoL, the impact of the level of severity of a PD patients symptoms on informal CB with PD, and mobility impairment impact on informal CB with PD were included. Studies that did not examine the impact of informal caregiving in terms of QoL, impact of the PD patients symptoms on CB with PD, and the impact of mobility of impairment on CB with PD across various countries were not included in this literature review. Organization of Studies A total of 16 studies were examined for the literature review. These studies investigated various factors that contribute to CB with PD across countries (i.e., Africa, Asia, Australia, Brazil, Belgium, Spain, Italy, India, South Korea, Nigeria, Singapore, United Kingdom, and United States). These studies were organized in a table format. A separate table was used to describe the literature for each hypothesis (see Tables A1-A4). Each table contains information on the study authors, the sample, the study characteristics, and the variables of interest. A second table was used to describe the main findings of each study as they relate to the shared and unique factors contributing to CB across countries (see Tables B1-B8). Furthermore, separate figures were used to describe the shared and unique factors of CB across countries indicated for each question (see Figure 1-4). Research question 1 asks, What factors contribute to informal CB with PD across various countries reviewed a. What shared factors appear to contribute to informal CB with PD across various countries reviewed b. What unique factors appear to contribute to informal CB with PD across various countries reviewed, and is addressed through review of 11 empirical studies (see Table A1, Table B1, and Table B2), research question 2 asks, Does informal CB impact the QoL of informal caregivers for individuals with PD across countries reviewed a. Which countries appear to have shared factors of CB with PD impacting QoL b. Which countries appear to have unique factors of CB with PD impacting QoL, and is addressed through review of eight empirical studies (see Table A2, Table B3, and Table B4), Research question 3 asks, Does the severity of a patients symptoms of PD (i.e., depression, psychosis, executive functioning, and physical impairment) impact informal CB across countries reviewed a. Which countries appear to have shared factors of CB impacted by the severity of a patients symptoms of PD b. Which countries appear to have unique factors of CB impacted by the severity of a patients symptoms of PD, and is addressed through review of eight empirical studies (see Table A3, Table B5, and Table B6), and research question 4 asks, Does the mobility of a patient with PD impact informal CB across countries reviewed a. Which countries appear to have shared factors of CB impacted by the mobility of a PD patient b. Which countries appear to have unique factors of CB impacted by the mobility of a PD patient, and is addressed through review of six empirical studies (see Table A4, Table B7, and Table B8). Chapter III Results As previously mentioned, a literature review has not been completed that systematically examines the caregiving experience for informal caregivers for patients of PD in various countries around the world. Since there is a dearth of research focused on informal CB with PD patients across cultures, a systematic literature review is needed to examine what factors contribute to CB across cultures to meet the needs of informal caregivers for PD. Furthermore, consideration of the influence of CB of informal caregivers for individuals with PD across countries is important to identify what needs informal caregivers for PD require based on their distinctive culture. This study reviews many findings that are obtainable in supporting the impact of CB on informal caregivers for patients with PD across different countries. The following material is divided into four parts to address each of the four research questions. Each part attempts to answer the questions utilizing the data accessible in the existing literature. It should be noted that for research question 1 and 3, due to the limited research only one study per country found factors to be associated with CB of informal caregivers for individuals with PD. Separate tables including the studies used for each question in this systematic review can be found in Appendix A (see Table A1-A4). In addition, separate tables including a comprehensive summary of the results for each question in this systematic review can be found in Appendix B (see Table B1-B8). Appendix C includes separate figures including the shared and unique factors of CB across countries indicated for each question (see Figure 1-4). Research Question 1 What factors contribute to informal CB with PD across various countries reviewed a. What shared factors appear to contribute to informal CB with PD across various countries reviewed b. What unique factors appear to contribute to informal CB with PD across various countries reviewed Factors that Contribute to Informal CB with PD across Countries The existing literature of 11 studies examining this question suggests that certain countries experience shared factors that contribute to informal CB with PD, whereas other countries experience unique factors (see Figure 1). The following material will be divided into two sections addressing the certain factors that are shared across cultures (i.e., disease duration of PD, level of behavioral symptoms and cognitive dysfunction of PD, level of severity of PD, duration of informal caregiving for PD, and mood state of informal caregiver for PD) (see Table B1) and the certain factors unique across cultures for informal caregivers for PD (i.e., sleep disturbance, financial concerns, and lack of social support) (see Table B2). Shared Factors that Contribute to Informal CB with PD across Countries Disease duration of PD. As discussed in previous sections, the age of onset of PD is typically from 55 to 70 years old (Dauer Przedborski, 2003). Due to the age of onset commonly being later in life, symptoms are often dismissed and seen as a normal process of aging (Amirnovin et al., 2004). The average individual lives with PD for approximately 10 to 20 years after official diagnosis (Factor Weiner, 2007). While life expectancy is similar to an individual absent of a PD diagnosis, a PD patient experiences a progression of decline in physical, cognitive, and behavioral functioning (Factor Weiner, 2007). Therefore, as the disease duration increases overtime, the patients ability to function daily decreases. The following section highlights some of the research that reported disease duration of PD as a factor contributing to CB for informal caregivers. Some studies (Dotchin et al., 2014 Oguh, Kwasny, Carter, Stell, Simuni, 2013 Zhong et al., 2016) have indicated that disease duration of PD is a factor contributing to CB for informal caregivers in the US, Australia, and Tanzania. More specifically, Oguh and colleagues (2013) recognized the extensive research conducted on CB and other chronic conditions (i.e., AD) in the US, whereas the research on CB with PD is substantially limited. Thus, the researchers examined the variables of PD disability associated with caregiver strain among informal caregivers for PD patients. Further, the researchers sought to identify variables of PD disability associated with CB among informal caregivers for PD and identified disease duration as a factor contributing to CB. Four thousand one hundred and thirty-two PD patients and 2,476 PD informal caregivers data was used from the National Parkinson Foundations Quality Improvement Registry (NPF-QII). The participants completed the Multidimensional Caregiver Strain Inventory (MCSI) to measure the level of caregiver strain and the Parkinsons Disease Questionnaire-39 (PDQ-39) to measure QoL in PD patients. The results indicated that 90.4 of informal caregivers for PD reported some level of caregiver strain, 17.3 reported moderate level of caregiver strain, and 11.2 reported severe level of caregiver strain (Oguh et al., 2013). Also, a multivariate logistic regression model identified duration of disease was significantly associated with caregiver strain (p 0.001, 95 CI 1.00, 1.05). The mean duration of PD reported was 7.9 years. In addition, informal caregivers reported experiencing perceived social stigma regarding taking care of an individual diagnosed with PD (Oguh et al., 2013). Overall, the research suggests that the longer an individual engages in the caregiving role, the more CB they will experience. A limitation to this study is that it is cross-sectional and requires longitudinal data to confirm the studys findings. In addition, utilizing self-report measures requires the researchers to take responses at face value and the resources may be biased due to selective memory, telescoping, attribution, and exaggeration by respondents. Nevertheless, the researchers reported this is the largest study to explore variables associated with CB with PD, which promotes the results as vastly generalizable to the overall population. Further, a study by Zhong and colleagues (2016) acknowledged that disease duration of PD contributes to CB for informal caregivers as well and recognized that CB of informal caregivers for individuals with PD is poorly understood in the Australian population. The researchers aimed to identify factors that were associated with CB in Melbourne, Australia of PD informal caregivers and identified disease duration as a factor contributing to CB. Fifty patient-caregiver pairs were recruited from three movement disorders clinics. The participants completed the Parkinsons Disease Caregiver Burden questionnaire (PDCB) to measure the level of CB, as well as the Unified Parkinsons Disease Rating Scale (UPDRS) and Hoehn Yahr (H Y) to measure symptom severity, and the Neuropsychiatry Unit Cognitive Assessment Tool (NUCOG) to assess patient cognition. In addition, the presence of impulsive and compulsive behaviors was assessed with the Questionnaire for Impulsive-Compulsive Disorders in Parkinsons Disease (QUIP-RS) and anxiety and depression were measured with the Hospital Anxiety and Depression Scale (HADS). The results indicated that disease duration was significantly associated with increased CB (r 0.405, p 0.004). Also, the mean duration of PD reported was 7.6 years. Disease duration significantly influences the level of CB an informal caregiver may experience. The study utilized the PDCB questionnaire, which is an assessment of strong reliability and validity, making it a valuable supplementary tool for the assessment of CB. Overall, the above-mentioned three studies emphasize that the disease duration of PD contributes to CB, which is consistent across various countries (i.e., US, Australia, and Tanzania). Also, the studies were similar in terms of the mean duration of disease being approximately 8.0 years. Thus, it can be suggested that CB is evidently occurring, on average, during the eight-year period of PD for the patient due to progression of the disease. Hence, distinctive cultures in these countries do experience disease duration as a shared factor related to CB for PD. Additionally, the research demonstrated limited research of PD and CB, which results in a lack of education and awareness regarding PD as well as a lack of resources across cultures. Nevertheless, it is evident this research is in its infancy and more research is required to fully understand the effect disease duration has on CB for PD. Level of behavioral symptoms and cognitive dysfunction of PD. As indicated earlier, PD patients experience a range of behavioral symptoms and cognitive dysfunction including obsessive-compulsive and impulsive behaviors such as gambling, shopping, and binge eating as well as sleep disturbance, and psychosis (Jankovic, 2008 Lees, Blackburn, Campbell, 1988 Weintraub et al., 2010). As a result of experiencing behavioral symptoms and cognitive impairment, informal caregivers assist in completing patients ADLs. Due to taking on daily responsibilities of the PD patient that he or she can no longer achieve on their own, they tend to become functionally dependent onto to the caregiver towards the later stages of PD. The following section highlights some of the research that reported the level of behavioral symptoms and cognitive dysfunction of the patient as a shared factor contributing to informal CB for PD. Researchers in Italy (DAmelio et al., 2009) examined the predictors of CB among informal caregivers for PD to provide early identification of factors contributing to the stress of informal caregivers in hope to improve their QoL and the patients care. DAmelio and colleagues (2009) also identified behavioral symptoms and cognitive dysfunction impacting CB of informal caregivers for individuals with PD. The participants completed the Caregiver Burden Inventory (CBI) to measure CB and the Geriatric Depression Scale (GDS) to measure depression. Also, patients motor functioning was assessed with the Unified Parkinsons Disease Rating Scale (UPDRS-ME), H Y staging, NPI, and Mini-Mental State Examination (MMSE) (DAmelio et al., 2009). The researchers identified neuropsychiatric symptoms including depression, hallucinations, and confusion as a factor contributing to CB (r 0.5, p 0.03) (DAmelio et al., 2009). In sum, the researchers suggest that a range of behavioral symptoms related to neuropsychiatric symptoms significantly impact CB of informal caregivers for individuals with PD. The above-mentioned four studies emphasize that behavioral symptoms and cognitive dysfunction contribute to CB of informal caregivers for individuals with PD, which is consistent across various countries (i.e., Nigeria, Brazil, Italy, and South Korea). Hence, these countries do experience behavioral symptoms and cognitive dysfunction (i.e., psychosis, motor behavior, and functional status) as shared factors contributing to CB for PD. Nevertheless, additional information is needed to examine what specific symptoms are significantly contributing to CB with PD across cultures. Level of Severity of PD. PD can be specified by the level of severity by reporting the PD symptoms to be mild, moderate, or severe based on an individuals ability to function daily (Iranzo et al., 2006 Meireles Massano, 2012 APA, 2013). Mild PD includes troublesome movement that does not interfere with completing ADLs, tremor on one side of the body, and differences in posture, walking, or facial expression (Parkinsons Disease Foundation, 2016 Nutt Wooten, 2005). Moderate PD involves movement impairment of the entire body, slowness in coordination, difficulty balancing, and freezing where the feet cannot move off the floor (Parkinsons Disease Foundation, 2016 Nutt Wooten, 2005). Lastly, severe PD involves advanced impairment in walking and cognitive functioning, as well as requiring a wheelchair, becoming bedridden and needing assistance with ADLs (Parkinsons Disease Foundation, 2016 Nutt Wooten, 2005). The following section highlights some of the research that reported the level of severity of the PD patient as a factor contributing to informal CB. Tan, Williams, and Morris (2012) conducted an in-depth qualitative examination of the caregivers experience in caring for a patient diagnosed with PD in Singapore and suggest that level of severity of PD impacts CB. Seventeen participants were recruited from the Singapore General Hospital Neurology Specialist Outpatient Clinic (SOC) and Parkinsons Disease Society of Singapore. Twenty-one participants were interviewed in a private setting of each participants choosing for roughly 42-106 minutes and questions were derived from the literature review and insights based on the researchers clinical experiences with PD and caregiving. The participants level of severity was classified by H Y (1967) with stage 1 being unilateral involvement with minimal or no functional disability, stage 2 bilateral involvement without impairment in balance, stage 3 mild to moderate disability with some postural instability, stage 4 severe disability, still able to walk and stand unassisted, and stage 5 being confinement to bed or wheelchair. Among the participants, 10 of the care recipients were at stage 3, 4 were at stage 4, three were at stage 2, and 2 were in each of Stage 1 and Stage 5. The results indicated that informal caregivers reported progression of the disease increased physical and emotional exhaustion as well as financial burden (n 8). As a result of being a qualitative study, the assessments are open-ended creating subjective results. Therefore, the conclusions derived may be based on personal biases or characteristics of the researchers. In addition to identifying disease duration of PD as a main contributor of CB for PD, Dotchin and colleagues (2014) also suggested that level of severity of PD is a main contributor to CB as well in Hai, Tanzania (U 166.0, z -3.91, p 0.001). The results indicated that PD patients experiencing more severe levels of PD results in higher CB. The majority of PD patients were in H Y stage 3 (n 8) and stage 4 (n 7). Similarly, Sanyal and colleagues (2015) suggested that level of severity as well as behavioral symptoms is main contributors for CB with PD in West Bengal, India. The results also indicated that disease status and stage of disease had the strongest influence on informal caregivers (r 0.20, p 0.0127, r 0.37, p 0.0001). The majority of the PD patients were in the mild (n 35) and moderate stage (n 50) of the disease. A more advanced PD was found to be associated with an increase in CB. Overall, these studies emphasize that level of severity of PD contribute to CB of informal caregivers for PD, which is consistent with various countries (i.e., Italy, South Korea, United Kingdom, Singapore, Tanzania, and India). Hence, these countries do experience level of severity of PD as a shared factor contributing to CB for PD. Duration of informal caregiving for PD. Research has suggested that informal caregivers devote approximately 20 to 40 hours a week to the caregiver role over a 4 to 5-year period (Brodaty Donkin, 2009 Smith, 2015). Their responsibilities may become more demanding due to the recipients health deteriorating as a result of age increasing or experiencing a chronic disease such as PD. Due to caregiving being a difficult role, research has demonstrated that informal caregivers experience extreme psychological, physical, and financial distress that may influence their own well-being as well as the well-being of the caregiver recipient (NFCSP, 2000 Smith, Smith, Toseland, 1991). Therefore, research suggests that the duration of informal caregiving plays a significant role in impacting CB for PD. The following section highlights some of the research that reported duration of informal caregiving for PD as a factor contributing to informal CB for informal caregivers. Various studies (Carod-Artal et al., 2013 Sanyal et al., 2015 Zhong et al., 2016) indicated duration of informal caregiving for PD as a factor contributing to informal CB for informal caregivers in Brazil, Australia, and India. Specifically, the above-mentioned study by Carod-Artal and colleagues (2013) indicated that duration of caregiving contributed to informal CB with PD (r 0.74, p 0.0001). The results indicated that informal caregivers reported an average duration of informal caregiving of 6.5 years (Carod-Artal et al., 2013). Likewise, researchers in Melbourne, Australia identified duration of caregiving for PD being significantly associated with increased CB (r 0.30, p 0.05) as well with an average duration of informal caregiving being 5.8 years (Zhong et al., 2016). Researchers suggested that escalating time demands placed on the informal caregiver increased CB. In West Bengal, India, researchers also indicated that duration of caregiving contributed to CB with PD for informal caregivers (Sanyal et al., 2015). The results indicated a positive correlation between caregiving duration and CBS score (r 0.33, p 0.0001). Overall, results suggested that informal caregivers experienced more CB the longer time they spent caring for the PD patient. In sum, the above-mentioned three studies emphasize that the duration of caregiving is a shared contributor to CB of informal caregivers for individuals with PD for certain countries (i.e., Brazil, Australia, and India). Thus, the longer a caregiver engages in the caregiving role, the more CB an individual may experience in these countries. In addition, research suggests that as PD advances, the more burdensome the responsibilities of the caregiver become. Implementing treatment interventions for informal caregivers in the early stages of PD can assist in decreasing CB in the more advanced stages of PD. Mood state of informal caregiver for PD. Due to gaining responsibility of the care of another person, an informal caregiver of PD may experience a number of emotional stressors that influence multiple aspects of their daily life, particularly their mood (Smith, 2015). Therefore, the research suggests that the mood state of the informal caregiver for PD may increase CB. The following section highlights some of the research that reported the mood state of an informal caregiver for PD as a factor contributing to informal CB for PD. Overall, based on the studies reviewed, disease duration of PD, level of behavioral symptoms and cognitive dysfunction of PD, level of severity of PD, duration of caregiving for PD, and mood state of informal caregivers for individuals with PD appear to be factors that contribute to CB across cultures (i.e., US, Australia, Tanzania, Nigeria, Brazil, Italy, South Korea, India, UK, and Spain) (see Table B1). Thus, various countries experience similarities in terms of CB as it relates to the progression and symptoms of PD. These findings can assist in developing interventions that are effective in reducing CB with PD as it relates to disease duration, behavioral symptoms and cognitive dysfunction, severity level, duration of informal caregiving, and mood state of the informal caregiver to improve the patients care as well as the caregivers wellbeing. Overall, providing preventative care for CB can reduce the effect of these contributing factors that may develop across cultures. Unique Factors that contribute to CB with PD across Countries The studies examining the factors that contribute to informal CB with PD also identified unique factors for particular countries contributing to CB. This section can be divided into the following subsections sleep disturbance, financial stressors, and lack of support. These subsections will highlight each unique factor contributing to CB of informal caregivers for individuals with PD for certain countries. Sleep disturbance of PD patients. A study conducted by researchers in Brazil previously mentioned, indicated PD patients experiencing sleep disturbance was an independent predictor of CB (Carod-Artal et al., 2013). The results indicated that sleep problems were an independent predictor of CB and sleep disorders tended to increase as PD progresses (r 0.52, p 0.007) (Carod-Artal et al., 2013). The researchers also indicated that PD patients in Brazil are cared for by their family members in their traditional homes and caregiving is not typically performed by the Brazilian national health system (Carod-Artal et al., 2013). Financial concerns of informal caregivers for PD. As aforementioned, Sanyal and colleagues (2015) identified that informal caregivers for PD in India experience difficulties with finances as a result of having reduced employment options and assistance economically with treatment and rehabilitation. The research suggested that households in India tend to have a sole financial earner, which contributes to an increase in financial stress (Sanyal et al., 2015). Also, the informal caregivers that reported lower degrees of education and income, reported the most stress at a moderate significant level as a result of limited financial capacities (r -0.18, p 0.03) (Sanyal et al., 2015). Overall, 91 of informal caregivers reported experiencing a certain degree of financial worry. Additionally, the researchers suggested that traditionally women have a social obligation to take on the role as the caregiver (Sanyal et al., 2015). Lack of social support of informal caregivers for PD. As discussed earlier, a study conducted by Tan, Williams, and Morris (2012) indicated that informal caregivers for PD in Singapore experience uncertainty regarding how to reduce stress and prepare for the progression of the disease (n 12) (Tan, Williams, Morris, 2012). Also, a lack of support from a social network and being unappreciated were obstacles (n 8). Moreover, caregivers relied significantly on foreign domestic helpers due to having smaller households with majority of children working to support the family (Tan, Williams, Morris, 2012). In sum, this section highlighted studies that evaluated the unique factors contributing to CB of informal caregivers for individuals with PD across some countries. Studies indicated unique factors (i.e., sleep disturbance Brazil, financial issues India, and lack of social support Singapore to certain countries that influence CB (see Table B2). In addition, the studies stressed the importance of researching CB across cultures to implement beneficial interventions and increase education for informal caregivers and PD patients. Research Question 2 Does informal CB impact the QoL of informal caregivers for individuals with PD across countries reviewed a. Which countries appear to have shared factors of CB with PD impacting QoL b. Which countries appear to have unique factors of CB with PD impacting QoL CB impacts the QoL of Informal Caregivers for PD across Countries Eight studies examining the impact of CB on QoL of informal caregivers for individuals with PD across countries address various factors of CB. The existing literature examining this question suggests that certain countries experience shared CB factors associated with QoL, whereas other countries experience unique factors. The following material will be divided into two sections addressing the shared factors of CB impacting QoL across countries (i.e., depression of informal caregivers for individuals with PD, disease severity of PD, and mobility impairment of PD) (see Table B3) and the unique factors of CB impacting QoL across countries (i.e., functional dependency of PD patient, psychological dysfunction of PD, behavioral problems of PD related to executive functioning, health-related QoL of PD patient, and duration of caregiving for PD) (see Table B4). Shared Factors of CB impacting QoL across Countries Similarly, researchers in the UK identified depression as the strongest and only predictor of QoL of informal caregivers for individuals with PD (Kudlicka et al., 2013). Kudlicka and colleagues (2013) examined the extent to which executive impairment contributes to QoL, health status, and CB. The researchers acknowledged that PD patients and their families require additional research accurately identifying the factors contributing to CB and QoL to provide adequate and effective support (Kudlicka et al., 2013). The researchers recruited 50 informal caregivers for PD and 65 PD patients from the local movement disorders clinics in North-West Wales. The informal caregivers completed the Questions on Life Satisfaction Scale (QoL-life) to measure QoL in terms of their subjective importance of a specific area of life or health and the degree of satisfaction in that area (Kudlicka et al., 2013). Also, caregivers completed the Caregiver Burden Inventory (CBI) to measure CB, the Parkinsons Disease Questionnaire-39 (PDQ-39) to assess health status, and the HADS to measure depression and anxiety. In addition, cognitive screening and executive functioning were measured using the Addenbrookes Cognitive Examination Revised (ACE-R), the Trail Making Test (TMT), and the Colour Word Interference Test (CWI). The results indicated that depression is a main predictor of QoL of informal caregivers for individuals with PD (r 0.45, p 0.001). Thus, depression was the strongest and the only significant predictor of QoL in the general life domain. In sum, researchers in Brazil and the UK suggest that depression is a main predictor of QoL of informal caregivers for individuals with PD (Carod-Artal et al., 2013 and Kudlicka et al., 2013). Therefore, the research indicated that informal caregivers for individuals with PD experience depression, an associated feature of CB, and decreases ones QoL in these countries. Thus, a diminished QoL reduces the ability for a caregiver to live a meaningful and fulfilled life. Nevertheless, both studies conducted require replication of the studies to accept the findings as reliable and valid. Disease severity of PD. Some studies (Demeulemeester, De Letter, Miatton, Santens, 2015 Martinez-Martin et al., 2005) suggested that disease severity of PD impacts the QoL of informal caregivers for individuals with PD in Spain and Belgium. In Spain, researchers suggested that disease severity was a factor influencing QoL of informal caregivers for individuals with PD as well (Martinez-Martin et al., 2005). Martinez-Martin and colleagues (2005) suggested that requiring the knowledge of the characteristics associated with CB and QoL of informal caregivers for individuals with PD would assist in designing effective interventions to improve caregiver emotional and physical distress (Martinez-Martin et al., 2005). Therefore, Martinez-Martin and colleagues (2005) assessed the impact of PD on informal caregivers in Spain and the main factors associated with impairment of informal caregiver QoL. Fifty-seven patient-caregiver pairs were recruited from neurologists who provided information about the study and completed an evaluation at a follow-up visit or during a visit to a local PD Association to qualify for the study. The participants completed the Unified Parkinsons Disease Rating Scale (UPDRS) to measure CB and patient independence, and the validated Spanish versions of the EQ-5D and the Parkinsons Disease Questionnaire (PDQ-8) to measure health-related QoL (Martinez-Martin et al., 2005). In addition, the caregivers completed the Spanish version of the Scale of Quality of Life of Caregivers (SQLC) to measure the impact of PD on caregivers and QoL and H Y to assess disease severity. The results indicated that as disease severity increased, the QoL of caregivers in Spain decreased (Martinez-Martin et al., 2005). Mean SQLC score was 113.82 21.08 (range, 53141, 95 CI 108.46119.17). Distribution of SQLC scores by degree of disease severity based on H Y classification (early 12, middle 2.53, late 45) indicated a significant decline (125.60 15.66, 107.88 18.10, and 91.87 22.80) which suggest decreased QoL amongst caregivers as the severity of the disease increased (Kruskal Wallis test, p 0.0001). More specifically, the level of patient disability of performing ADLs was the most significant factor associated with CB, impacting caregivers QoL in a negative way (p 0.001) (Martinez-Martin et al., 2005). Furthermore, caregiver health-related QoL was lower among female caregivers (Mann-Whitney test, p 0.019). The researchers use of Spanish version of assessments allowed the participants to understand the nature of the scales by using their origin of language. Therefore, the Spanish version of the assessments eliminated the participants misunderstanding the scales to affect the results. However, a limitation of the study included the researchers having to take the response as face value due to the participants mailing the questionnaires after completion. The respondents may have been biased due to selective memory and exaggeration of responses or completed by a different source. Nevertheless, the researchers did expand on the literature focused on informal caregivers for individuals with PD in Spain. Mobility impairment of PD. Two studies (Morley et al., 2012 Oguh et al., 2013) indicated that mobility impairment of the PD patient affects the QoL for informal caregivers in the US and the UK. A study conducted in the US by Oguh and colleagues (2013) examined the variables for PD disability associated with caregiver strain among informal caregivers for PD patients and examined the relationship between CB and patient QoL. Four thousand one hundred and thirty-two PD patients and 2,476 PD informal caregivers data were used from the National Parkinson Foundations Quality Improvement Registry (NPF-QII) (Oguh et al., 2013). The participants completed the Multidimensional Caregiver Strain Inventory (MCSI) to measure the level of caregiver strain and the PDQ-39 to measure patient QoL. When analyzing the results, the researchers used the c-statistic as the statistic to show a measure of good fit for binary outcomes in a logistic regression model. The results indicated that the total PDQ-39 was the single best factor associated with a high caregiver strain (c-statistic of continuous variable PDQ-39 0.79, p 0.001). The results indicated that the inability to stand unaided, motor fluctuations, and higher frequency of falls were associated with CB and the PDQ-39 total score had the strongest association with high levels of CB, with the PDQ-mobility subscale being the second most significant variable (c 0.78, p 0.001) (Oguh et al., 2013). The patient QoL impairment measured by the PDQ-39 cut off was associated with severe and moderate CB (total PDQ-39, c 0.74, PDQ-mobility c 0.73, p 0.001). Thus, the QoL impairment was strongly associated with high levels of CB as the mobility impairment for the PD patient worsened (Oguh et al., 2013). Overall, researchers in the US and UK indicated that mobility impairment of the PD patient significantly influences informal caregivers QoL. Hence, the research indicated that informal caregivers for individuals with PD in these countries experience an increase in CB as a result of their QoL becoming reduced as the PD patient experiences a decline in mobility functioning. Unique Factors of CB with PD impacting QoL across Countries Functional dependency of PD patient. As previously mentioned, Demeulemeester and colleagues (2015) conducted a study in Belgium investigated the QoL of PD patients and their informal caregivers. The results indicated that PD patients and informal caregivers considered that their QoL significantly decreased compared to their QoL before the onset of PD (p 0.001, t -7.62, and p 0.001, t -6.12) (Demeulemeester et al., 2015). Also, all measures of QoL were negatively correlated to patient dependency indicating an increase in CB for both patients and caregivers as the disease worsened (r -0.39, p 0.005). In general, researchers in Belgium suggest that as the PD patients functional dependence increases, informal caregivers experience a decrease in QoL and an increase in CB. Psychological dysfunction of PD. Demeulemeester and colleagues (2015) also indicated that all measures of QoL were negatively correlated to psychological dysfunction indicating an increase in CB for both patients and caregivers as the PD patients cognitive functioning declined (r -0.52, p 0.001) (Demeulemeester et al., 2015). Overall, the results suggest that both physical dependence and cognitive dysfunction of PD majorly influence the QoL for caregivers. Therefore, the cognitive symptoms of PD should not be dismissed as an influence on informal caregivers QoL. Behavioral problems of PD related to executive functioning. The above-mentioned study by Kudlicka and colleagues (2013) also identified that behavioral problems related to executive functioning (i.e., decision making, prioritizing activities, goal planning, and slow processing) contributed to QoL and health status in PD patient of CB in the UK. The researchers indicated that the best predictor of QoL in both health (r -0.45, p 0.01) and movement (r -0.44, p 0.001) was executive functioning of PD patients (Kudlicka et al., 2013). Nevertheless, the understanding of the impact of executive functioning on PD patients and their caregivers is significantly limited and additional research is needed (Kudlicka et al., 2013). Health-Related QoL of PD patient. In Australia, researchers examined the relationship between health-related QoL (HRQoL) in PD patients and their informal caregivers (Kelly et al., 2012). The researchers also examined the association between caregiver HRQoL and CB. Ninety-seven patient-caregiver pairs were recruited from general medical practitioners, neurologists, Parkinsons Victoria Network, and advertisements in local papers in Australia (Kelly et al., 2012). Participants completed the EQ-5D to measure health-related QoL and the PDQ-39 to measure QoL and disease specific information. A VAS was also used to assess the subjects perceived health. In addition, informal caregivers completed the MCSI to measure caregiver strain (Kelly et al., 2012). The results indicated that informal caregivers experience a lower QoL as a result of the PD patient experiencing poor HRQoL (r 0.3, p .001). The researchers indicated that the informal caregivers appeared to report a lower level of stress as compared to empirical articles in the literature with the majority of caregivers scoring less than 16 out of a maximum 26. Despite the low median, some caregivers were at near-maximal strain (Kelly et al., 2012). Therefore, a limitation of this study is that the patient-caregiver pairs volunteered to participate in the study, which could contribute to more positive responses being reported. As a result, the findings cannot be generalized to the overall population. In sum, this section highlighted studies that evaluated CBs impact on QoL of informal caregivers for individuals with PD across countries and the various factors of CB that relate to QoL. Studies indicated that certain countries (i.e., Brazil, UK, Spain, Belgium, and US) experience shared CB with PD factors associated with QoL (i.e., depression, disease severity, and mobility impairment) (see Table B3), whereas other countries (i.e., Belgium, UK, and Australia) experience unique factors (i.e., functional dependency of PD patient Belgium, psychological dysfunction of PD Belgium, behavioral problems of PD related to executive functioning UK, health-related QoL of PD patient Australia, and duration of caregiving for PD (UK)) (see Table B4 and Figure 2). In addition, the studies stressed the importance of taking into consideration how both the PD patient and informal caregiver experience a decline in QoL and how this may be due to various cultural factors. Research Question 3 Does the severity of a patients symptoms of PD (i.e., depression, psychosis, executive functioning, and physical impairment) impact informal CB across countries reviewed Which countries appear to have shared factors of CB impacted by the severity of a patients symptoms of PD Which countries appear to have unique factors of CB impacted by the severity of a patients symptoms of PD Severity of a PD Patients Symptoms impact CB across Countries The eight studies examining the severity of a patients symptoms of PD address several factors that relate to informal CB across countries. The existing literature examining this question suggests that certain countries experience shared factors associated with severity of PD, whereas other countries experience unique factors. The following material will be divided into two sections addressing the certain factors (i.e., depression of informal caregiver for PD, psychosis of PD, more advanced stages of PD, executive functioning impairment of PD, and financial and physical burden related to informal caregiving for PD) that are shared across countries (see Table B5) and the unique factors across countries (i.e., US and Brazil) for informal caregivers for PD (see Table B6). Shared Factors of CB impacted by the Severity of PD Symptoms across Countries Researchers in India also identified depression for informal caregivers as a related factor to level of severity of PD (Sanyal et al., 2015). Sanyal and colleagues recognized the dismissal of CB of informal caregivers for individuals with PD in the current literature, particularly examining CB in India. Therefore, the researchers investigated factors associated with increased CB and to evaluate the impact of PD in West Bengal, India (Sanyal et al., 2015). One hundred and fifty patient-caregiver pairs were recruited from the neurology outpatient Department of Movements Disorders Clinics of National Neurosciences Centre (NNC) and Nil Ratan Sircar Medical College (NRS) using interviewer-rated semi structured self-administered questionnaires among PD patients and informal caregivers over a 3.5-year period (Sanyal et al., 2015). The participants completed the Burden Assessment Scheduled (BAS) and the Caregivers Burden Scale (CBS) to measure CB. In addition, the UPDRS and H Y were used to measure disease status and stage of PD. The participants level of severity was classified by H Y stages previously described. Also, the participants completed the Montgomery Asberg Depression Rating Score (MADRS) to measure depression and the Hospital Anxiety and Depression Scale (HADS) to measure anxiety and depression (Sanyal et al., 2015). The results indicated that informal caregivers depressive symptoms increased as a result of the PD patients level of severity of PD worsening (r 0.22, p 0.0076). In addition, the results indicated that the mean number of caregiver depression was significantly higher in the fourth and fifth stages of PD (r 0.37, p 0.001). A limitation to this study was excluding psychotic symptoms or side effects of medication because these factors could potentially have a significant effect on CB for informal caregivers in PD. Researchers in Spain (2008) also identified an association between depressive symptoms of the caregiver and level of severity of PD symptoms (Martinez-Martin et al., 2008). The researchers investigated the characteristics of PD patients, their caregivers, and the association between these characteristics and CB, health status, and mood (Martinez-Martin et al., 2008). Participants were recruited from a nationwide, observational Longitudinal Parkinsons Disease Patient Study (ELEP). Two hundred and eighty-nine patient-caregiver pairs completed the Clinical Impression of Severity Index for Parkinsons Disease (CISI-PD) and H Y to measure level of severity, the Scales for Outcomes in Parkinsons Disease-Cognitive Scale (SCOPA-COG) to measure cognitive status, and the HADS to measure anxiety and depression (Martinez-Martin et al., 2008). The participants level of severity was classified by H Y stages previously described. The results indicated that caregiver depression and CB significantly heightened as the stage of the disease according to the H Y scale and CISI-PD based severity levels increased (Kruskal-Wallis test, p 0.0001, and p 0.05). The researchers poor description of the method in which the participants were recruited creates difficulty for future researchers to replicate the study to accept the findings as valid. However, the exclusion criteria excluded many confounding variables that could have impacted the results. Overall, researchers in India, South Korea, and Spain suggest that a PD patients level of disease severity influences informal caregiver depression as the disease progresses. Thus, researchers propose that informal caregivers will experience an increase in depressive symptoms as a result of the PD patients level of severity intensifying in these countries. Psychosis of PD. Moreover, two studies (Carod-Artal et al., 2013 Shin et al., 2012) indicated that psychosis in the PD patient is a factor of CB for informal caregivers impacted by the severity of PD in Brazil and South Korea. Carod-Artal and colleagues (2013) examined main determinants (i.e., psychosis) of CB of Brazilian PD patients. Fifty patient-caregiver pairs were recruited at the outpatient neurology clinic of the Sarah Hospital in Brazil to complete self-assessments measuring various dependent variables including anxiety, depression, behavioral symptoms, motor functioning, sleep disturbance, and psychological factors (Carod-Artal et al., 2013). The participants completed the Scales for Outcomes in Parkinsons Disease-Motor (SCOPA-Motor) to measure motor symptoms, SCOPA-Cognition to measure cognitive functioning, the Parkinsons Psychosis Rating Scale (PPRS) to assess psychotic symptoms, and the Non-Motor Symptoms Scale (NMSS) to measure various non-motor symptoms (i.e., sleep, mood, psychosis, sexual function, and urinary function) (Carod-Artal et al., 2013). The participants also completed the Zarit Caregiver Burden Interview (ZCBI) to measure CB and the CISI-PD and H Y to measure disease severity (Carod-Artal et al., 2013). The results indicated that 46 of PD patients reported being in the H Y stage 3 and 54 were in H Y stage 1-2. In addition, the results indicated that behavioral-psychotic symptoms were an independent predictor of CB (r 0.74, p 0.0001). As the level of severity increased, the apparition of cognitive and psychiatric complications increased as well contributing to an increase in CB (Carod-Artal et al., 2013). The researchers further indicated that many PD patients reported experiencing an increase in non-motor symptoms, such as psychosis, as PD progressed (Carod-Artal et al., 2013). Thus, CB can be predicted to increase as psychotic behaviors are frequently connected with cognitive dysfunction and dementia in PD. The researchers indicated that there is a need to further evaluate non-motor symptoms of PD in the literature to assist in relieving CB with appropriate and effective caregiver treatments. As previously mentioned, researchers in India also identified the more advanced stages of PD as an indicator of increase in CB for informal caregivers also (Sanyal et al., 2015). Sanyal and colleagues indicated that the more advanced PD was the more CB was reported. The informal caregivers reported that the number of tasks tripled in stages 4 and 5 of PD and there was a decrease in predictability in their daily routines (Sanyal et al., 2015). Therefore, the researchers suggest that as the level of severity increases, specifically in the more moderate to advanced stages of PD, CB increases as well. Specifically, duration of disease and patients stage of illness was positively correlated with CB (r 0.20, p 0.0127, r 0.37, p 0.0001). A limitation to this study was excluding individuals experiencing psychotic symptoms or side effects of medication because these factors could potentially have a significant effect on CB for informal caregivers in PD. Overall, based on the research completed in Italy and India, the results suggest that informal caregivers across some countries (i.e., Italy and India) experience an increase in CB as the level of severity of PD progressively worsens in the later stages. Therefore, as the PD patient symptoms become more severe in these countries, CB likely becomes exacerbated. Financial and physical burden related to informal caregiving for PD. Researchers (Oguh et al., 2013 Tan et al., 2012) suggested financial and physical burden related to informal caregiving for PD is a factor of CB impacted by the severity of PD symptoms in the US and Singapore. A study conducted in the US by Oguh and colleagues (2013) examined the variables of PD disability associated with caregiver strain among informal caregivers for PD patients and examined the relationship between CB and patient QoL. Four thousand one hundred and thirty-two PD patients and 2,476 PD informal caregivers data was used from the National Parkinson Foundations Quality Improvement Registry (NPF-QII) (Oguh et al., 2013). The participants completed the Multidimensional Caregiver Strain Inventory (MCSI) to measure the level of caregiver strain, the PDQ-39 to measure patient QoL and disease specific information, and H Y to measure disease severity (Oguh et al., 2013). The participants level of severity was classified by H Y stages previously described. The results indicated that caregiver strain was associated with severity, specifically H Y stage greater than 3 (p 0.001, c 0.84). Further, caregivers that reported experiencing moderate to severe levels of strain with patients in stage 3 or greater of PD experienced significant physical and financial burden (p 0.001). In addition, the researchers reported that higher MCSI scores were associated with higher utilization of social and mental health services. This relationship highlights the importance of mental health providers obtaining accurate knowledge of the severity of the cognitive and psychiatric disability and appropriate intervention. A limitation to this study is that it is cross-sectional and would benefit from a longitudinal study design to confirm the findings are valid and reliable, while examining changes that may occur overtime as PD progresses. Likewise, researchers in Singapore also suggested that informal caregivers for individuals with PD experience significant physical and financial burden as the level of severity of PD progresses (Tan et al., 2012). Tan, Williams, and Morris (2012) conducted an in-depth qualitative examination of the caregivers experience in caring for a patient diagnosed with PD in Singapore. Participants were recruited from the Singapore General Hospital neurology specialist outpatient clinic (SOC) and Parkinsons Disease Society of Singapore. The participants were interviewed in private setting of each participants choosing and questions were derived from the literature review and insights based on the researchers clinical experiences with PD and caregiving. Twenty-one participants were interviewed in a private setting for roughly 42-106 minutes and questions were derived from the literature review and insights based on the researchers clinical experiences with PD and caregiving. The participants level of severity was classified by H Y stages previously described. Among the participants, 10 of the care recipients were at stage 3, four were at stage 4, three were at stage 2, and two were in each of Stage 1 and Stage 5. The results indicated that informal caregivers reported progression of the disease increased physical exhaustion as well as financial burden (n 8). As a result of being a qualitative study, the assessments are open-ended creating subjective results. Therefore, the conclusions derived may be based on personal biases or characteristics of the researchers. Overall, the two studies indicate that informal caregivers for PD in the US and Singapore experience an increase in CB as a result of experiencing financial and physical burden due to engaging in the caregiving role. More specifically, the studies indicate that financial and physical burden tend to intensify and progress in the later stages of PD in these countries. Unique Factors of CB impacted by the Severity of PD Symptoms across Countries United States. As mentioned previously, Oguh and colleagues (2013) examined the variables of PD disability associated with caregiver strain among informal caregivers for individuals with PD patients and examined the relationship between CB and patient QoL in the US The results indicated that caregiver strain was associated with severity, specifically H Y stage greater than 3 (c 0.79, p 0.001). Further, caregivers that reported experiencing moderate to severe levels of strain with patients in stage 3 or greater of PD, the patient engaged in demanding or manipulative behavior to receive care (r 0.43, p 0.001) (Oguh et al., 2013). Also, the results indicated that informal caregivers experienced time and social constraints in the mild stages of PD (r 0.43, p 0.001). Thus, informal caregivers likely begin to experience lack of social support in the early stages of PD due to meeting caregiver responsibilities and tasks. Brazil. The aforementioned study by Carod-Artal and colleagues (2013) examined main determinants of CB of Brazilian PD patients. The results indicated that 46 of PD patients reported being in the H Y stage 3 and 54 were in H Y stage 1-2. In addition, the results indicated that sleep disturbance was an independent predictor of CB (r 0.74, p 0.0001). As the level of severity increased, the patients sleep disturbance increased as well contributing to an increase in CB (Carod-Artal et al., 2013). The researchers further indicated that many PD patients reported experiencing an increase in non-motor symptoms, such as sleep disturbance, as PD progressed (Carod-Artal et al., 2013). The researchers indicated that there is a need to further evaluate non-motor symptoms of PD in the literature to assist in relieving CB with appropriate and effective caregiver treatments. Overall, this section highlighted studies that evaluated the severity of a PD patients symptoms relation to informal caregivers across countries. Studies indicated that certain countries (i.e., South Korea, India, Spain, Brazil, Italy, UK, and US) experience shared factors (i.e., depression of informal caregiving for PD, psychosis of PD, more advanced stages of PD, executive functioning impairment of PD, and financial and physical burden related to informal caregiving for PD) (see Table 5) associated with severity of PD symptoms and informal caregiving, whereas other countries (i.e., US and Brazil) experience unique factors including severity of PD and social constraints US and sleep disturbance Brazil (see Table B6 and Figure 3). In addition, the studies emphasized the importance of recognizing challenges or concerns that may occur in the various stages of PD and how interventions can decrease CB throughout the progression of the disease. Research Question 4 Does the mobility of patient with PD impact informal CB across countries reviewed Which countries appear to have shared factors of CB impacted by the mobility of a PD patient Which countries appear to have unique factors of CB impacted by the mobility of a PD patient Mobility of PD Patient relation to Informal CB across Countries The six studies examining the mobility function of a PD patient addresses several factors that relate to CB for informal caregivers across countries. The existing literature examining this question suggests that certain countries experience shared factors associated with mobility functioning, whereas other countries experience unique factors. The following material will be divided into two sections addressing the certain factors that are shared across cultures (i.e., increased caregiver strain of PD and cognitive impairment of PD) (see Table B7) and the certain factors unique across cultures for informal caregivers for PD (i.e., depression of informal caregivers for individuals with PD, anxiety of informal caregivers for individuals with PD, and social functioning of informal caregivers for individuals with PD) (see Table B8). Shared Factors of CB impacted by Mobility of PD Patient across Countries Similarly, a study conducted in the US indicated that motor difficulties for PD patients increased caregiver strain (Oguh et al., 2013). Oguh and colleagues (2013) recognized the extensive research conducted on CB and other chronic conditions (i.e., AD), whereas the research on CB with PD is substantially limited. Thus, the researchers examined the variables of PD disability associated with caregiver strain among informal caregivers for PD patients (Oguh et al., 2013). The researchers sought to identify variables of PD disability associated with CB among informal caregivers for PD. Four thousand one hundred and thirty-two PD patients and 2,476 PD informal caregivers data was recruited from the National Parkinson Foundations Quality Improvement Registry (NPF-QII). The participants completed the Multidimensional Caregiver Strain Inventory (MCSI) to measure the level of caregiver strain and the Parkinsons disease Questionnaire- 39 (PDQ-39) to measure patient QoL (Oguh et al., 2013). When analyzing the results, the researchers used the c-statistic as the statistic to show a measure of good fit for binary outcomes in a logistic regression model. The results indicated that the degree of caregiver strain was associated the presence of motor fluctuations. Specifically, among the PDQ-39 subscales, the PDQ-mobility was the best subscale score associated with a high caregiver strain (c 0.78, p 0.001). Moreover, the inability to stand unaided, not living at home, motor fluctuations, and higher frequency of falls were associated with caregiver stain as well (p 0.001) (Oguh et al., 2013). A limitation to this study is that it is cross-sectional and requires longitudinal data to confirm the studys findings. In addition, utilizing self-report measures requires the researchers to take responses at face value and the resources may be biased due to selective memory, telescoping, attribution, and exaggeration by respondents. Another study conducted in the US identified increased caregiver strain with mobility impairment and difficulties for PD patients (Carter et al., 2008). Carter and colleagues examined the relationship of specific clinical symptoms in early to middle stage PD to different dimensions of caregiver strain and depression. Two hundred and nineteen patient-spouse caregiver pairs were recruited from twenty-three sites of the Parkinsons Study Group (PSG) as part of an ancillary study on spousal caregiving (Carter et al., 2008). Participants completed the Unified Parkinsons Disease Rating Scale-Activities of Daily Living (UPDRS-ADL) to measure level of disability, and the Family Care Inventory (FCI) to measure caregiver strain. The results indicated that when PD patients had higher levels of motor symptoms, their caregivers reported more global strain and worry from direct care (r 0.180.24, p 0.008) (Carter et al., 2008). A limitation to this study was only examining spousal caregiving strain and excluding other informal caregivers such as children, siblings, or in-laws. By recruiting from other type of informal caregivers allows the results to be generalized to a larger population and increase sample size and statistical power. In sum, researchers in India, Nigeria, and the US identify that as a PD patients mobility function becomes impaired, informal caregivers experience an increase in caregiver strain. Overall, the research suggests that mobility functioning in PD significantly influences the level of CB a caregiver experiences and ultimately creates more difficulty in caring for the PD patient in these countries. Unique Factors of CB impacted by Mobility of PD Patient across Countries Depression of informal caregivers for PD. The above-mentioned study conducted in the US identified increased caregiver depression with mobility impairment and difficulties for PD patients (Carter et al., 2008). Carter and colleagues (2008) examined the relationship of specific clinical symptoms in early to middle stage PD to different dimensions of caregiver strain and depression. The results indicated that when PD patients had higher levels of motor symptoms, their caregivers reported more depressive symptoms (r 0.15, p 0.05) (Carter et al., 2008). A limitation to this study was only examining spousal caregiving strain and excluding other informal caregivers such as children, siblings, or in-laws. By recruiting from other type of informal caregivers allows the results to be generalized to a larger population and increase sample size and statistical power. Anxiety of informal caregivers for PD. Tan, Williams, and Morris (2012) conducted an in-depth qualitative examination of the caregivers experience in caring for a patient diagnosed with PD in Singapore. Seventeen participants were recruited from the Singapore General Hospital neurology specialist outpatient clinic (SOC) and Parkinsons Disease Society of Singapore. Twenty-one participants were interviewed in a private setting of the participants chose for roughly 42-106 minutes and questions were derived from the literature review and insights based on the researchers clinical experiences with PD and caregiving. The participants level of severity was classified by H Y stages previously described. Among the participants, 10 of the care recipients were at stage 3, four were at stage 4, three were at stage 2, and two were in each of stage 1 and stage 5. The results indicated that informal caregivers reported experiencing anxiety and fear regarding patients loss of balance and falls (n 12). Therefore, the PD patient experiencing impaired mobility functioning contributed to the caregiving experiencing anxious symptoms. As a result of being a qualitative study, the assessments are open-ended creating subjective results. Therefore, the conclusions derived may be based on personal biases or characteristics of the researchers. This section highlighted studies that evaluated the factors related to informal caregivers and the mobility function of a PD patient across countries. Studies indicated that certain countries (i.e., India, Nigeria, and US) experience shared factors (i.e., increased caregiver strain of PD and cognitive impairment of PD) (see Table B7) associated with mobility function that influence CB with PD, whereas other countries (US and Singapore) experience unique factors (i.e., informal caregiver depression US and anxiety Singapore) (see Table B8 and Figure 4). In addition, the studies stressed the importance of understanding how the severity of mobility functioning of the PD patient significantly influences the caregiver to experience emotional burden of anxiety and depression. Chapter IV Discussion and Summary Overview of Main Results This systematic literature review examined 16 studies that investigated various factors that contribute to CB with PD across countries (i.e., Africa, Asia, Australia, Brazil, Belgium, Spain, Italy, India, South Korea, Nigeria, Singapore, United Kingdom, and United States). Four research questions address the shared and unique factors that contribute to CB cross-culturally. Research question 1 asks, What factors contribute to informal CB with PD across various countries reviewed a. What shared factors appear to contribute to informal CB with PD across various countries reviewed b. What unique factors appear to contribute to informal CB with PD across various countries reviewed, and is addressed through review of 11 empirical studies. Based on the studies reviewed, disease duration, level of behavioral symptoms and cognitive dysfunction, level of severity, duration of caregiving, and mood state of informal caregivers appear to be factors that contribute to CB of PD, which are shared across cultures (i.e., US, Australia, Tanzania, Nigeria, Brazil, Italy, South Korea, India, UK, and Spain). In addition, the studies indicated unique factors (i.e., sleep disturbance Brazil, financial issues India, and lack of social support Singapore to certain countries that influence CB. Research question 2 asks, Does informal CB impact the QoL of informal caregivers for individuals with PD across countries reviewed a. Which countries appear to have shared factors of CB with PD impacting QoL b. Which countries appear to have unique factors of CB with PD impacting QoL, and is addressed through review of eight empirical studies. Studies indicated that certain countries (i.e., Brazil, UK, Spain, Belgium, and US) experience shared CB with PD factors associated with QoL (i.e., depression of informal caregiver, disease severity, and mobility impairment), whereas other countries (i.e., Belgium, UK, and Australia) experience unique factors (i.e., functional dependency of patient Belgium, psychological dysfunction Belgium, behavioral problems related to executive functioning UK, health-related QoL of patient Australia, and duration of caregiving UK). Research question 3 asks, Does the severity of a patients symptoms of PD (i.e., depression, psychosis, executive functioning, and physical impairment) impact informal CB across countries reviewed a. Which countries appear to have shared factors of CB impacted by the severity of a patients symptoms of PD b. Which countries appear to have unique factors of CB impacted by the severity of a patients symptoms of PD, and is addressed through review of eight empirical studies. Studies indicated that certain countries (i.e., South Korea, India, Spain, Brazil, Italy, UK, and US) experience shared factors (i.e., depression of informal caregiver, psychosis, more advanced stages, executive functioning impairment, and financial and physical burden) related to informal caregiving for PD associated with severity of PD symptoms, whereas other countries (i.e., US and Brazil) experience unique factors including severity of PD and social constraints US and sleep disturbance Brazil. Lastly, Research question 4 asks, Does the mobility of a patient with PD impact informal CB across countries reviewed a. Which countries appear to have shared factors of CB impacted by the mobility of a PD patient b. Which countries appear to have unique factors of CB impacted by the mobility of a PD patient, and is addressed through review of six empirical studies. Studies indicated that certain countries (i.e., India, Nigeria, and US) experience shared factors (i.e., increased caregiver strain and cognitive impairment) associated with mobility function that influence CB with PD, whereas other countries (i.e., US and Singapore) experience unique factors (i.e., depression of informal caregiver US and anxiety of informal caregiver Singapore). In sum, the preliminary findings suggest that informal caregivers for individuals with PD across cultures experience shared and unique factors contributing to CB as it relates to QoL of informal caregivers, level of severity of PD, and mobility functioning of the PD patient. Additional research is needed to further examine what specific factors across cultures contribute to CB with PD to develop effective and valuable interventions. Specific Research Questions Research Question 1 What factors contribute to informal CB with PD across various countries reviewed a. What shared factors appear to contribute to informal CB with PD across various countries reviewed b. What unique factors appear to contribute to informal CB with PD across various countries reviewed There has been limited evidence supporting what factors across countries impact CB of informal caregivers for individuals with PD. Research has indicated that disease duration, level of behavioral symptoms and cognitive dysfunction, level of severity, duration of caregiving, and mood state of informal caregiver are shared factors impacting CB across countries. Shared Factors that Contribute to Informal CB with PD across Countries Disease duration of PD. Specifically, several studies (Oguh et al., 2013 Zhong et al., 2016 Dotchin et al., 2014) have indicated that disease duration of PD is a factor contributing to CB for informal caregivers in the US, Australia, and Tanzania. In the US, Ough and colleagues (2013) indicated that the longer an individual engages in the caregiving role, the more CB they will experience with the mean duration of PD reported was 7.9 years. In addition, the researchers suggested that informal caregivers reported experiencing perceived social stigma regarding taking care of a patient diagnosed with PD (Oguh et al., 2013). Also, researchers in Australia indicated that disease duration was significantly associated with increased CB as well with a mean duration of PD being 7.6 years. Similarly, Dotchin and colleagues (2014) suggested that disease duration was a predictor of caregiver strain in Hai, Tanzania, with a reported mean duration of PD as 8.0 years. In addition, the researchers reported Hai, Tanzania as a resource-poor setting and being absent of institutions for older adults in need of high level care. Thus, PD patients are cared for by informal caregivers who reduce their work hours or terminate their career, which decreases a familys financial income. In general, the studies were similar in terms of the mean duration of disease being approximately 8 years. Thus, it can be suggested that CB is evidently occurring, on average, during the eight-year period of PD for the patient due to progression of the disease. Hence, distinctive cultures in these countries do experience disease duration as a shared factor related to CB for PD. Level of behavioral symptoms and cognitive dysfunction of PD. Some studies (Ojagbemi, 2013 Carod-Artal et al., 2013 DAmelio et al., 2009 Shin et al., 2012) have indicated that the level of behavioral symptoms and cognitive dysfunction of PD is a factor contributing to CB for informal caregivers in Nigeria, Brazil, Italy, and South Korea. Specifically, Ojagbemi (2013) suggested that behavioral symptoms including apathy, aberrant motor behavior, and appetite change were more frequent with cognitive dysfunction and an increase in CB. In addition, cognitive dysfunction including hallucinations was associated with CB as well (Ojagbemi, 2013). Furthermore, the researchers suggested that the predominant caregiver in Nigeria appeared to be a female spouse, employed or a housewife, and permanently took care of the PD patient. Likewise, researchers in Brazil indicated that behavioral-psychotic symptoms were an independent predictor of CB (Carod-Artal et al., 2013). The results suggested that as a PD patients severity of functioning worsens and/or they experience behavioral symptoms related to psychosis, caregivers tend to experience an increase in CB (Carod-Artal et al., 2013). Researchers in Italy also identified that neuropsychiatric symptoms included depression, hallucinations, and confusion as a factor contributing to CB. Thus, the researchers suggest that a range of behavioral symptoms related to neuropsychiatric symptoms significantly impact CB of informal caregivers for individuals with PD. Shin and colleagues (2012) likewise indicated that informal caregivers for PD experience significant CB as the level of PD severity worsens in terms of the patient experiencing hallucinations. In sum, these studies provide insight into the cognitive decline a PD individual experiences as the progression of the disease advances, which suggests that cognitive deterioration of the PD patient increases CB. Overall, informal caregivers for PD in Nigeria, Brazil, Italy, and South Korea do experience behavioral symptoms and cognitive dysfunction (i.e., psychosis, motor behavior, and functional status) as shared factors contributing to CB for PD. Level of severity of PD. Moreover, the research indicated that several studies (DAmelio et al., 2009 Shin et al., 2012 Kudlicka et al., 2013 Tan et al., 2012 Dotchin et al., 2014) showed that level of severity of PD is a factor contributing to CB for informal caregivers in Italy, South Korea, India, UK, and Tanzania. Specifically, researchers in Italy suggested that CB was significantly associated with level of PD severity (DAmelio et al., 2009). Also, the level of disability for the PD patients was mild and the results indicated that PD informal caregivers reported stress in each stage of the disease and specifically became higher during stage 2 (i.e., bilateral involvement without impairment in balance). Similarly, Shin and colleagues (2012) indicated that the level of severity of PD symptoms as a predictive factor of CB in PD for informal caregivers in South Korea. The results also suggested that CB with PD was predicted by level of severity, specifically in terms of impairment in memory, insight, hallucination, depression, and volition (Shin et al., 2012). Researchers in the UK also identified level of severity of PD as the strongest and only predictor of CB for informal caregivers (Kudlicka et al., 2013). Further, researchers in Singapore indicated level of severity of PD as a contributor to CB for informal caregivers as well. Specifically, informal caregivers for individuals with PD reported progression of PD increased physical and emotional exhaustion as well as financial burden (Tan, Williams, and Morris 2012). Likewise, Dotchin and colleagues (2014) also suggested that level of severity of PD is a main contributor to CB as well in Hai, Tanzania and indicated that PD patients experiencing more severe levels of PD resulted in higher CB. Moreover, Sanyal and colleagues (2015) suggested that level of severity is a main contributor for CB with PD in West Bengal, India with the results indicating that disease status and stage of disease had the strongest influence on informal caregivers. Overall, these studies have suggested that informal caregivers for PD in Italy, South Korea, UK, Singapore, Tanzania, and India experience level of severity of PD as a shared factor contributing to CB for PD. Duration of informal caregiving for PD. Various studies (Carod-Artal et al., 2013 Zhong et al., 2016 Sanyal et al., 2015) indicated duration of informal caregiving for PD as a factor contributing to CB for informal caregivers in Brazil, Australia, and India. Specifically, Carod-Artal and colleagues (2013) indicated that duration of caregiving contributed to informal CB with PD. Likewise, researchers in Melbourne, Australia identified duration of caregiving for PD being significantly associated with increased CB (Zhong et al., 2016). In addition, Zhong and colleagues (2016) suggested that escalating time demands placed on the informal caregiver increased CB. In West Bengal, India, researchers also indicated that duration of caregiving contributed to CB with PD for informal caregivers (Sanyal et al., 2015). Overall, the longer an informal caregiver for PD engages in the caregiving role, the more CB an individual may experience in these countries. In sum, these studies have suggested that informal caregivers for individuals with PD in Brazil, Australia, and India experience duration of caregiving as a shared factor contributing to CB for PD. Mood state of informal caregiver for PD. Some studies (Shin et al., 2012 Martinez-Martin et al., 2008 Carod-Artal et al., 2013) indicated mood state of informal caregivers for individuals with PD as a factor contributing to CB for informal caregivers in South Korea, Spain, and Brazil. Shin and colleagues (2012) researched informal caregivers for individuals with PD in South Korea and indicated that caregiver depression was a strong predictor of CB of informal caregivers for individuals with PD. Further, the researchers indicated that an association between depression in PD patients and depression in caregivers might manifest the direct influence of patients mood on caregivers mood (Shin et al., 2012). Similarly, Martinez-Martin and colleagues (2008) indicated that caregivers affective status was the most important factor influencing CB and their perceived health in Spain (Martinez-Martin et al., 2008). Moreover, the researchers suggested caregiver depression was associated with disease severity, duration of PD, and the patients depression for informal caregivers in Spain (Martinez-Martin et al., 2008). In Brazil, researchers suggested that caregivers mood state was an independent predictor of CB of informal caregivers for individuals with PD as well (Carod-Artal et al., 2013). Overall, informal caregivers in these countries experience a negative mood state which contributes to an increase in CB. In sum, these studies have suggested that informal caregivers for PD in South Korea, Spain, and Brazil share mood state as a contributing factor for increased CB. Overall, based on the studies reviewed, disease duration, level of behavioral symptoms and cognitive dysfunction, level of severity, duration of caregiving, and mood state of informal caregivers appear to be shared factors that contribute to CB across cultures (i.e., US, Australia, Tanzania, Nigeria, Brazil, Italy, South Korea, India, UK, and Spain). Thus, various countries experience similarities in terms of CB as it relates to the progression and symptoms of PD. Unique Factors that Contribute to Informal CB with PD across Countries Sleep disturbance of PD patients. The studies examined also identified unique factors that contribute to informal CB of PD in particular countries contributing to CB. Researchers in Brazil indicated that sleep problems of the PD patient were an independent predictor of CB and sleep disorders tended to increase as PD progresses (Carod-Artal et al., 2013). Additionally, researchers also indicated that PD patients in Brazil are cared for by their family members in their traditional homes and caregiving is not typically performed by the Brazilian national health system (Carod-Artal et al., 2013). Thus, the research has identified that in Brazilian culture, PD care is performed within the home, which may be increasing CB due to lack of resources, awareness, and education from the healthcare system. Financial concerns of informal caregivers for PD. Furthermore, Sanyal and colleagues (2015) identified that informal caregivers for individuals with PD in India experience difficulties with finances as a result of having reduced employment options and assistance economically with treatment and rehabilitation. The research suggested that households in India tend to have a sole financial earner, which contributes to an increase in financial stress (Sanyal et al., 2015). Hence, the research brings to light that informal caregivers in India experience CB as a result of not receiving financial support in treatment options within the home or institutionally. As a result, informal caregivers in India are experiencing CB in general as well as financial burden that contributes to an increase in CB. Also, the informal caregivers that reported lower degrees of education and income, reported the most stress at a moderate significant level as a result of limited financial capacities (Sanyal et al., 2015). In addition, the researchers suggested that traditionally women have a social obligation to take on the role as the caregiver (Sanyal et al., 2015). Therefore, women are expected to become the informal caregiver for the PD patient. In sum, informal caregivers in India experience CB related to financial burden and may benefit from economic assistance. Lack of social support of informal caregivers for PD. Moreover, Tan, Williams, and Morris (2012) indicated that informal caregivers for PD in Singapore experience uncertainty regarding how to reduce stress and prepare for the progression of the disease (Tan, Williams, Morris, 2012). Also, a lack of support from social network and being unappreciated was an obstacle. Hence, informal caregivers in Singapore require education regarding coping skills to manage and reduce negative mood states as well as knowledge about PD symptoms and the progression of the disease. Moreover, caregivers relied significantly on foreign domestic helpers by reason of having smaller households with majority of children working to support the family (Tan, Williams, Morris, 2012). Therefore, informal caregivers in Singapore require additional assistance from outside help due to other family members providing financial income. Overall, the above-mentioned studies indicated unique factors (i.e., sleep disturbance Brazil, financial issues India, and lack of social support Singapore) to certain countries that influence CB of informal caregivers for individuals with PD. Research Question 2 Does informal CB impact the QoL of informal caregivers for individuals with PD across countries reviewed a. Which countries appear to have shared factors of CB with PD impacting QoL b. Which countries appear to have unique factors of CB with PD impacting QoL The existing literature examining this question suggested that certain countries experience shared CB factors associated with QoL of informal caregivers for individuals with PD. Studies indicated that certain countries (i.e., Brazil, UK, Spain, Belgium, and US) experience shared CB with PD factors associated with QoL (i.e., depression, disease severity, and mobility impairment). Share Factors of CB impacting QoL across Countries Depression of informal caregivers for PD. Specifically, studies (Carod-Artal et al., 2013 Kudlicka et al., 2013) indicated depression of informal caregivers for individuals with PD as a factor impacting their QoL in Brazil and UK. Carod-Artal and colleagues (2013) indicated that caregivers emotional state was based on depression and depression was a significant determinant of caregivers health-related QoL. Overall, Brazilian caregivers QoL and health status reduce as a result of experiencing an increase in depression, which ultimately increases CB. Similarly, researchers in the UK identified depression as the strongest and only predictor of QoL for informal caregivers for PD (Kudlicka et al., 2013). Overall, researchers in Brazil and the UK suggested that depression is a main predictor of QoL for informal caregivers for PD (Carod-Artal et al., 2013 Kudlicka et al., 2013). Disease severity of PD. Some studies (Martinez-Martin et al., 2005 Demeulemeester et al., 2015) suggested that disease severity of PD impacts the QoL for informal caregivers in Spain and Belgium. Researchers in Spain indicated that as disease severity increased, the QoL for caregivers in Spain decreased (Martinez-Martin et al., 2005). More specifically, the level of patient disability of performing ADLs was the most significant factor associated with CB, impacting caregivers QoL in a negative way. Further, the researchers suggested that caregiver health-related QoL was lower among female caregivers in Spain (Martinez-Martin et al., 2005). Moreover, researchers in Belgium identified disease severity of PD as a factor impacting the QoL for informal caregivers for PD as well (Demeulemeester et al., 2015). The results suggested that as disease severity of PD increased, the QoL for informal caregivers decreased. In sum, the research indicated that informal caregivers for individuals with PD in these countries experience an increase in CB as a result of their QoL becoming decreased as the disease progresses overtime. Mobility impairment of PD patient. Two studies (Oguh et al., 2013 Morley et al., 2012) indicated that mobility impairment of the PD patient affects the QoL for informal caregivers in the US and the UK. Oguh and colleagues (2013) indicated that the inability to stand unaided, motor fluctuations, and higher frequency of falls were associated with CB in the US. Thus, the QoL impairment was strongly associated with high levels of CB as the mobility impairment for the PD patient worsened (Oguh et al., 2013). Likewise, researchers in the UK suggested that PD patients level of mobility was a significant predictor on a caregivers QoL (Morley et al., 2012). The results also suggested female carers reported significantly inferior QoL as measured by social and personal activities, anxiety and depression, self-care, and stress. In sum, the research indicated that informal caregivers for PD in these countries experience an increase in CB as a result of their QoL becoming decreased as the PD patient experiences a decline in mobility functioning. In sum, based on the studies reviewed, researchers indicated that depression of informal caregiver, disease severity, and mobility impairment of PD patients shared factors that contribute to CB across cultures for PD (i.e., Brazil, UK, Spain, Belgium, and US). Unique Factors of CB impacting QoL across Countries The studies examined also identified unique factors that contribute to informal CB for PD in particular countries. Research has indicated that functional dependency, psychological dysfunction, behavioral problems related to executive functioning, and health-related QoL issues in patients with PD, along with duration of caregiving as unique factors that contribute to CB for informal caregivers and adversely impact QoL across countries. Functional dependency of PD patient. Demeulemeester and colleagues (2015) in Belgium suggest that as the PD patients functional dependence increases, informal caregivers experience a decrease in QoL and an increase in CB. Thus, functional dependency of the patient with PD inversely contributes to QoL for informal caregivers in Belgium. Psychological function of PD patient. Additionally, Demeulemeester and colleagues (2015) also indicated that psychological dysfunction of PD increases CB for informal caregivers. The results suggest that both physical dependence and cognitive dysfunction of PD majorly influenced the QoL for caregivers. Behavioral problems related to executive functioning. Moreover, researchers in the UK (2013) identified that behavioral problems related to executive functioning (i.e., decision making, prioritizing activities, goal planning, and slow processing) and health status in PD patient contributed to QoL and CB (Kudlicka et al., 2013). Health-Related QoL concerns for PD Patient. Kelly and colleagues in Australia (2012) suggested that informal caregivers experience a lower QoL as a result of the PD patient experiencing poor HRQoL. Thus, the researchers indicated that patients poor QoL influences the informal caregiver to experience a decreased QoL as well. Duration of informal caregiving for PD. Morley and colleagues (2012) in the UK indicated that the length in the caregiving role was a significant influence on the informal caregivers QoL in terms of self-care, depression, and anxiety. Specifically, the longer the caregiver engaged in the caregiving role, the worse their QoL became, increasing their caregiver stress. Moreover, the researchers suggest that female caregivers experienced a significant decrease in QoL compared to male caregivers in the UK and experience more vulnerability in the caregiving role (Morley et al., 2012). Overall, the above-mentioned studies indicated unique factors (i.e., functional dependency Belgium, psychological dysfunction Belgium, behavioral problems related to executive functioning UK, health-related QoL of patient Australia, and duration of informal caregiving UK) that contribute to informal CB with PD impacting QoL. Research Question 3 Does the severity of a patients symptoms of PD (i.e., depression, psychosis, executive functioning, and physical impairment) impact informal CB across countries reviewed a. Which countries appear to have shared factors of CB impacted by the severity of a patients symptoms of PD b. Which countries appear to have unique factors of CB impacted by the severity of a patients symptoms of PD The existing literature examining this question suggests that certain countries experience shared factors associated with severity of PD. Studies indicated that certain countries (i.e., South Korea, India, Spain, Brazil, Italy, UK, and US) experience shared CB with PD factors associated with level of severity of PD (i.e., depression of informal caregiver, psychosis, more advanced stages, executive functioning impairment, and financial and physical burden related to informal caregiving). Shared Factors of CB impacted by the Severity of PD Symptoms across Countries Depression of informal caregivers for PD. Several researchers (Shin et al., 2012 Sanyal et al., 2015 Martinez-Martin et al., 2008) indicated that depression of informal caregivers for individuals with PD is a factor of CB impacted by the severity of the PD symptoms in South Korea, India, and Spain. Specifically, Shin and colleagues (2012) indicated that CB with PD was predicted by level of severity, specifically in terms of caregiver depression. Therefore, the results suggest that informal caregivers experience significant CB as the level of severity PD worsens and the informal caregiver experiences increased levels of depression (Shin et al., 2012). Researchers in India also identified depression for informal caregivers as a related factor to level of severity of PD (Sanyal et al., 2015). The results indicated that informal caregivers depressive symptoms increased as a result of the PD patients level of severity worsening. In addition, the results indicated that the mean number of caregiver depression was significantly higher in stages 4 and 5 of PD (Sanyal et al., 2015). Researchers in Spain (2008) also identified an association between depressive symptoms of the caregiver and level of severity of PD symptoms (Martinez-Martin et al., 2008). Overall, researchers in India, South Korea, and Spain suggest that a PD patients level of disease severity influences informal caregiver depression as the disease progresses. Psychosis of PD. Moreover, two studies (Carod-Artal et al., 2013 Shin et al., 2012) indicated that psychosis of the PD patient is a factor of CB for informal caregivers impacted by the severity of PD in Brazil and South Korea. Carod-Artal and colleagues (2013) indicated that behavioral-psychotic symptoms were an independent predictor of CB. In addition, as the level of severity increased, the apparition of cognitive and psychiatric complications increased as well contributing to an increase in CB. Likewise, researchers in South Korea suggested that psychotic symptoms for PD patients were associated with the level of severity and CB (Shin et al., 2012). The results indicated that CB with PD was predicted by level of severity, specifically in terms of patients experiencing hallucinations and H Y stage 3. Therefore, the results indicated that informal caregivers for individuals with PD experience significant CB as the level of severity of PD worsens in terms of the patient experiencing hallucinations. In sum, researchers suggest that in particular countries (i.e., Brazil and South Korea) as the level of severity increases for PD patients, psychotic symptoms are likely to occur, which increases CB. More advanced stages of PD. More advanced stages of PD were also suggested as a factor of CB impacted by the severity of PD symptoms for informal caregivers in Italy and India (D Amelio et al., 2009 Sanyal et al., 2015). Researchers in Italy indicated that CB was significantly associated with level of PD severity, with the average level of disability for the patients was stage 2 (mild) (D Amelio et al., 2009). Thus, the results indicated that PD informal caregivers reported stress in each stage of the disease and CB specifically becomes higher during the second stage. Likewise, researchers in India identified that the more advanced PD was the more CB was reported. The informal caregivers reported that the number of tasks tripled in stages 4 and 5 of PD and there was a decrease in predictability in their daily routines (Sanyal et al., 2015). Therefore, the researchers suggest that as the level of severity increases, specifically in the more moderate to advanced stages of PD, CB increases as well. Overall, based on the research completed in Italy and India, the results suggest that informal caregivers for individuals with PD across some countries (i.e., Italy and India) experience an increase in CB as the level of severity of PD progressively worsens in the later stages. Executive functioning impairment of PD. Some studies (Kudlicka et al., 2013 Shin et al., 2012) indicated that executive functioning impairment of PD is a factor of CB impacted by the severity of PD symptoms for informal caregivers in the UK and South Korea. For instance, Kudlicka and colleagues (2013) in the UK indicated that executive functioning impairment may occur in the earliest stages of PD and significantly increase CB as regards to caring for non-physical symptoms of PD (Kudlicka et al., 2013). Additionally, researchers in South Korea suggested that informal caregivers experience significant CB as the level of severity of PD worsens in terms of the patient experiencing impairment in executive functioning (Shin et al., 2012). The results suggested that informal caregivers experience significant CB as the level of severity of PD worsens in terms of the patient experiencing impairment in executive functioning. Financial and physical burden related to informal caregiving for PD. Researchers (Oguh et al., 2013 Tan et al., 2012) suggested that financial and physical burden related to informal caregiving for PD is a factor of CB impacted by the severity of PD symptoms in the US and Singapore. Oguh and colleagues (2012) indicated that caregiver strain was associated with severity, specifically H Y stage greater than 3. Further, caregivers that reported experiencing moderate to severe levels of strain with patients in stage 3 or greater of PD experienced significant physical and financial burden. Likewise, researchers in Singapore also suggested that informal caregivers for PD experience significant physical and financial burden as the level of severity of PD progresses (Tan et al., 2012). Overall, the two studies indicate that informal caregivers for individuals with PD in the US and Singapore experience an increase in CB as a result of experiencing financial and physical burden due to engaging in the caregiving role. More specifically, the studies indicated that financial and physical burden tend to intensify and progress in the later stages of PD in these countries. In sum, based on the studies reviewed, researchers indicated that depression of informal caregiver, psychosis, more advanced stages, executive functioning impairment, and financial and physical burden related to informal caregiving are factors associated with level of severity of PD and CB that appear to be shared factors that contribute to CB across cultures (i.e., South Korea, India, Spain, Brazil, Italy, UK, and US). Thus, various countries experience similarities in terms of level of PD severity and CB of informal caregivers for individuals with PD. Unique Factors of CB impacted by the Severity of PD Symptoms across Countries The studies examined also identified unique factors that contribute to informal CB of PD in particular countries. Research indicated that the US and Brazil experience unique factors impacted by the level of severity of PD that contribute to informal CB. Moreover, researchers in the US indicated that caregiver strain was associated with severity, specifically H Y stage greater than 3. Further, caregivers that reported experiencing moderate to severe levels of strain with patients in stage 3 or greater of PD, the patient engaged in demanding or manipulative behavior to receive care (Oguh et al., 2013). Also, the results indicated that informal caregivers experienced time and social constraints in the mild stages of PD. Similarly, in Brazil, Carod-Artal and colleagues (2013) indicated that sleep disturbance was an independent predictor of CB and that many PD patients reported experiencing an increase in non-motor symptoms, such as sleep disturbance, as PD progressed. Overall, the US and Brazil experience unique factors including social constraints US and sleep disturbance Brazil impacted by the level of severity of PD that contribute to informal CB. Research Question 4 Question 4 Does the mobility of patient with PD impact informal CB across countries reviewed a. Which countries appear to have shared factors of CB impacted by the mobility of a PD patient b. Which countries appear to have unique factors of CB impacted by the mobility of a PD patient The existing literature examining this question suggested that certain countries experience shared factors associated with mobility functioning of the PD patient. Studies indicated that certain countries (i.e., India, Nigeria, and US) experience increased caregiver strain and cognitive impairment as factors of CB impacted b mobility functioning of the PD patient. Shared Factors of CB impacted by Mobility of PD Patient across Countries Increased caregiver strain of PD. Some studies (Sanyal et al., 2015 Ojagbemi, 2013, Oguh et al., 2012 Carter et al., 2008) indicated that increased caregiver strain of PD is a factor of CB impacted by the mobility of the PD patient for informal caregivers in India, Nigeria, and the US. Specifically, researchers in India indicated that a significant predictor for the increase of CB was the PD patient experiencing motor difficulties (Sanyal et al., 2015). Furthermore, the researchers emphasized that motor examination of performing ADLs are markers of symptom severity and functional impairment, which substantially influence a caregiver to experience increased caregiver strain (Sanyal et al., 2015). Additionally, researchers in Nigeria suggested that as cognitive dysfunction increases, motor impairment increases as well, creating more CB for the caregiver (Ojagbemi, 2013). Also, aberrant motor behavior was more frequent with cognitive dysfunction and increased caregiver distress. Similarly, a study conducted in the US indicated that motor difficulties for PD patients increased caregiver strain (Oguh et al., 2013). The results indicated that the degree of caregiver strain was associated the presence of motor fluctuations. Moreover, the inability to stand unaided, not living at home, motor fluctuations, and higher frequency of falls were associated with caregiver stain as well (Oguh et al., 2013). Another study conducted in the US identified increased caregiver strain with mobility impairment and difficulties for PD patients (Carter et al., 2008). The results indicated that when PD patients had higher levels of motor symptoms, their caregivers reported more global strain and worry from direct care. In sum, researchers in India, Nigeria, and the US identify that as a PD patients mobility function becomes impaired, informal caregivers experience an increase in caregiver strain. Cognitive impairment of PD. Two studies (Kudlicka et al., 2013 Ojagbemi, 2013) indicated that cognitive impairment of PD is a factor of CB impacted by the mobility of the PD patient for informal caregivers in the UK and Nigeria. Researchers in the UK indicated that executive functioning (i.e., prioritizing, poor planning, and goal setting) and behavioral disturbances were significant predictors of CB (Kudlicka et al., 2013). Overall, the researchers suggested that executive functioning impairment may occur in the earliest stages of PD and significantly increase CB in regards to caring for non-physical symptoms of PD. Likewise, researchers in Nigeria indicated that apathy, aberrant motor behavior, and appetite change were more frequent with cognitive dysfunction and increased caregiver distress (Ojagbemi, 2013). In addition, hallucinations and agitation were related to cognitive dysfunctions. Therefore, there was more behavior-related caregiver distress in those with cognitive dysfunction than those without (Ojagbemi, 2013). Overall, researchers in the UK and Nigeria suggest that PD patients experience impairment in cognitive functioning experience more difficulty in their mobility functioning, which leads to an increase in CB. Unique Factors of CB impacted by Mobility of PD Patient across Countries Depression of informal caregivers for PD. The studies examined also identified unique factors that contribute to informal CB of PD in particular countries. A study conducted in the US identified increased caregiver depression with mobility impairment and difficulties for PD patients (Carter et al., 2008). The results indicated that when PD patients had higher levels of motor symptoms, their caregivers reported more depressive symptoms. Anxiety of informal caregivers for PD. Furthermore, researchers in Singapore indicated that informal caregivers reported experiencing anxiety and fear regarding patients loss of balance and falls (Tan e al., 2012). Therefore, the PD patient experiencing impaired mobility functioning contributed to the caregiver experiencing anxious symptoms. In sum, the US and Singapore experience unique factors including depression and anxiety for informal caregivers impacted by the mobility of a PD patient. Summary of Main Conclusions Based on the findings of this study, informal caregivers for individuals with PD across cultures do experience shared and unique factors related to CB, the caregivers QoL, level of severity of PD symptoms, and mobility functioning of the PD patient. These shared and unique factors of CB impacted by various characteristics can be suggested due to not being previously and/or heavily researched in the literature within these countries. More specifically in terms of unique factors, it is important to note that unique factors may be due to personal attitudes and beliefs, level of social support, financial status, and/or access to healthcare systems. Therefore, such factions would not have been uniquely identified by other cultures within the context of current research. Overall, with regard to the above mentioned, shared and unique factors in this population across cultures have not yet been extensively studied, which emphasizes the need for additional research to increase knowledge and awareness on the cultural needs of informal caregivers for individuals with PD as it relates to the caregivers QoL, level of severity of PD symptoms, and mobility functioning of the PD patient. In sum, the results support the notion that caregiving is a difficult and exhaustive role involving extreme psychological, physical, and financial distress which is impacted by an individuals cultural background and environment (NFCSP, 2000 Smith, Smith, Toseland, 1991). Overall, research is lacking regarding PD and CB, the evidence thus far suggests a need for continued examination of caregiver needs across cultures. In particular, as the current research presents, PD appears to present challenges for informal caregivers cross-culturally. Therefore, clinical implications including continued research, improved knowledge-base, and increased awareness regarding cultural impact and needs of informal caregivers would likely be beneficial in understanding CB and improving QoL. Clinical Implications Recognizing that the current study is limited based on minimal research available across cultures for CB of informal caregivers for individuals with PD this study provides some preliminary support that suggests a need for future research. Hence, this research has a number of clinical implications. Increase education and community awareness about PD. These findings provide support for interventions to increase education and awareness of PD for informal caregivers across cultures. Specifically, past research indicated that informal caregivers require support and education in incorporating their roles and responsibilities that existed prior to becoming an informal caregiver (Pasetti et al., 2003). Additionally, this study indicated that informal caregivers for individuals with PD experience uncertainty regarding how to prepare for the progression of PD and manage stress. Therefore, increasing education and awareness of PD and CB for informal caregivers across cultures is needed. The development of informal caregiver training programs that implement a culture specific focus can provide education and awareness to caregivers as well as skills needed to meet caregiving expectations based on their distinctive environment. Promoting psychoeducation about the increased demands that occur as PD symptoms gradually progress, which ultimately increases CB can assist caregivers in being prepared for the changes that may occur. Enlightening the informal caregivers about CB and the physical, social, and psychological stressors they may endure can motivate preventative action towards CB as well. In addition, training programs can incorporate coping skills to reduce CB and the available resources in their community. Inevitably, more research is required across cultures to identify their distinctive needs, which could lead to caregiver training programs implementing more specific self-care and preventative methods to reduce CB as PD progresses. Informal caregiver training may also bring together a cohort experiencing similar life circumstances, which may ultimately become another support network for the caregiver. Further, primary care providers that specialize in geriatrics tend to be the first point of contact for patients and provide comprehensive care for chronic disorders, such as PD (American Academy of Family Physicians (AAFP), 2018). Thus, primary care providers can play a larger role in providing education not only to the recipient of care, but also to the informal caregiver. Therefore, primary care providers must become multiculturally competent within the geriatric community, through academic curriculum or continuing education programs, to provide care and resources to various cultures and to become efficient in supplying education regarding the progression of PD. In addition, primary care providers should be aware of how to connect informal caregivers for individuals with PD to associations or organizations that provide avenues of emotional and physical support. Providing educational materials directly to patients and informal caregivers for individuals with PD in their offices, waiting rooms, and/or websites can also spread awareness of PD and CB. Moreover, informal caregivers in the US reported experiencing perceived social stigma regarding taking care of a patient diagnosed with PD (Oguh et al., 2013). Consequently, the research may suggest that engaging in the caregiving role is perceived by society in America as undesirable and rejected in general by society. Researchers also indicated that informal caregivers experienced time and social constraints in the mild stages of PD. Thus, informal caregivers across cultures likely begin to experience lack of social support in the early stages of PD as a result of meeting caregiver responsibilities and tasks. Thus, implementing awareness and education of PD within this community may reduce societal stigma and/or provide copings skills to informal caregivers to reduce shame. Wide-spread advocacy by healthcare providers, caregiving associations, non-profit organizations, and mental health facilities regarding PD and CB related to informal caregiving can assist in decreasing societal stigma by increasing awareness regarding CB and the difficult social, emotional, and physical consequences informal caregivers experience as the disease progresses. In doing so, informal caregivers may receive more societal support and decreased stigma engaging in the caregiving role. Increased awareness regarding social support networks available for informal caregivers within their distinctive community can provide beneficial resources for informal caregivers for individuals with PD to reduce CB related to lack of social support. Developing and facilitating seminars, workshops, and support groups that are accessible to informal caregivers for individuals with PD and focus on cultural differences can provide additional networks to increase awareness and education regarding CB with PD. As a result of statistics demonstrating 22 of caregivers are over 50-years-old and the onset of PD is commonly 50-years-old, taking into consideration unique cultural factors of the older adult population is needed (NFCSP, 2000). Thus, these programs should be promoted towards facilities easily accessible to the older adult population such as nursing homes, assisted living centers, senior living facilities, rehabilitation centers, and medical providers that specialize in geriatrics or across the lifespan. Overall, providing education and awareness regarding PD and CB can assist caregivers in preparation for the caregiving role and implement skills and tools to decrease CB. Importance of multicultural competence as it relates to informal caregivers for PD. This study also suggests that there is a need for mental healthcare providers to achieve multicultural competence and how it relates to informal caregivers for individuals with PD. Specifically, informal caregivers for individuals with PD across cultures indicated being surrounded by poor resources for the older adult population in need of higher-level care and lack of social support. The literature further indicated that ethnic minorities are significantly limited in their accessibility to healthcare (General, 2001). Thus, the need to improve healthcare, as a result of an increase in cultural diversity, has triggered the movement towards multicultural competence for mental health professionals. Further, the demand for psychologists to achieve multicultural competence within the older adult population will continuously increase due to the older population living longer and becoming more diverse (Karel, Gatz, Smyer, 2012). As a result, taking into consideration unique cultural factors of the older adult population across countries can increase multicultural competence within the age group and expand on what exclusive needs informal caregivers for individuals with PD require based on their distinctive cultural values and beliefs (NFCSP, 2000). In sum, the research consistently demonstrates that psychologists abilities to meet the required demands of the older population in the upcoming years will not be met (Karel et al., 2012 Qualls, Segal, Norman, Niederehe, Gallagher-Thompson, 2002). Utilizing theoretical approaches, previously mentioned, that focus on cultural competence can assist mental health professionals to incorporate appropriate and effective skills when working with diverse older adult populations, such as informal caregivers for individuals with PD. Specifically, Sue, Ivey, and Pedersen (1996) framework includes cultural awareness and beliefs, cultural knowledge, and cultural skills that can assist professionals in understanding the required skills and knowledge needed to reach multicultural competence. In addition, Gordon Allports Social Categorization theory explanation of discrimination resulting from human beings understanding their social world by creating two categorical groups, the in-group and an out group, to organize individuals who are similar and different from themselves can assist mental health professionals in gaining awareness of how older adults across cultures are perceived by society. Moreover, Allports theory can assist mental health professionals in identifying the resources needed of the older adult population of informal caregivers for individuals with PD as part of an in-group or an out-group. Creating and implementing graduate school training programs that incorporate mandatory Geropsychology courses as well as diversity courses utilizing these approaches can increase multicultural competency across mental health providers to be able to work with the older adult population in a more effective and beneficial manner. In sum, this study proposes that psychologists must achieve multicultural competence in working with diverse cohorts of informal caregivers for individuals with PD across cultures because of the significant impact culture has on an individuals beliefs towards caring for an individual experiencing PD. This can further be achieved by implementing future research to examine specific cultures in more detail to gain a clear and concise understanding of their needs and barriers. Subsequently, developing continuing education seminars, workshops, and proper training programs in Geropsychology for healthcare providers to make available education on the distinct social and ethnic traits that influence informal caregivers for individuals with PD daily life can assist in developing effective interventions. Overall, understanding the distinctive characteristics of informal caregivers for individuals with PD can increase multicultural competence for healthcare providers. Resources needed for informal caregivers across cultures. Another clinical implication this study highlights, refers to informal caregivers for individuals with PD experiencing a lack of resources within their population. For instance, researchers reported Hai, Tanzania as a resource-poor setting and being absent of institutions for older adults in need of high level care. Thus, PD patients are cared for by informal caregivers who reduce their work hours or terminate their career, which decreases a familys financial income (Dotchin et al., 2008). In addition, researchers in Brazil indicated that PD patients are cared for by their family members in their traditional homes and caregiving is not typically performed by the Brazilian national health system (Carod-Artal et al., 2013). Similarly, Sanyal and colleagues (2015) identified informal caregivers for individuals with PD in India experience difficulties with finances attributable to reducing employment options and assistance economically with treatment and rehabilitation. Hence, concluded that particular countries should consider implementing financial preparation within healthcare plans that incorporate financial assistance of informal caregivers for chronic diseases, such as PD to reduce financial burden. Resources that may be implemented through financial planning seminars for informal caregivers of chronic diseases include budgeting and saving skills and preparation for income changes as the disease progresses. In addition, developing cost-effective and affordable institutions, such has nursing homes, assisted living facilities, rehabilitation centers, senior living, and community-based services to older adults can provide other resources for informal caregivers across cultures. Moreover, primary care providers, mental health facilities, and healthcare organizations for chronic diseases can promote advocacy to achieve cost-effective services for low SES populations or underserved communities to reduce financial-related CB with PD as well. Furthermore, previously noted research indicates that informal caregivers experience difficulty attending medical appointments, maintaining a healthy diet, and exercising regularly, which ultimately weakened their overall health (Schulz Sherwood, 2008). Thus, implementing social work services to coordinate respite care and adult sitters in organization with informal caregivers can ensure that the informal caregiver is regularly attending routine appointments with healthcare providers, attend support groups, and engage in physical healthcare and exercise to improve their overall wellness and aid in reducing CB related to depression and anxiety. Overall, informal caregivers across cultures experience a lack of resources, specifically financially or institutionally, which brings into light the need for additional resources and advocacy within each culture to provide the most effective and beneficial support to reduce CB of informal caregivers for individuals with PD. Cross-Cultural needs for informal caregivers amongst other disorders. Another clinical implication of this study refers to increasing awareness of the role of informal caregivers in general. CB is experienced across cultures for various disorders, which emphasizes the importance of identifying what resources are needed to reduce CB universally to assist this population in functioning to their fullest potential. For example, past research has indicated that Latinos, African Americans, and Chinese caregivers of AD experience lack of knowledge of AD and a need for improved communication from physicians (Mahoney, Cloutterbuck, Neary, Zhan, 2005), while South Korean and Haitian caregivers of development disabilities reported cultural barriers including unwillingness to receive nontraditional services from a provider outside of the family, language difficulty, and lack of knowledge about available services (McCallion et al., 1997). Furthermore, informal caregivers of stroke victims in Australia reported engaging in overprotection to decrease feelings of guilt and experienced poor emotional health including fatigue and stress (Anderson et al., 1995). Therefore, informal caregivers across several disorders are experiencing CB, which is impairing their ability to function daily. In sum, the informal caregiving role is exhaustive involving extreme psychological, physical, and financial distress that is impacted by an individuals cultural background and environment (NFCSP, 2000 Smith, Smith, Toseland, 1991). Therefore, informal caregivers across cultures require additional research to identify how their specific culture influences CB and how interventions can be developed to reduce CB in general. Quality of life-Based interventions for informal caregivers for PD. This study emphasizes the importance of taking into consideration how both the PD patient and informal caregiver experience a decline in QoL influenced by various factors related to culture and PD. Specifically, this study suggests that both the patient and the caregiver, experience a decline in their QoL as disease severity of PD increases. Therefore, applying programs that improve QoL for informal caregivers can reduce mental and physical consequences one may experience as a result of caring for a chronic disease with several motor and non-motor characteristics. Possible QoL interventions that may be applied within this population include exercise programs, relaxation and stress reduction education, self-care discussions and plans, and mindfulness-based stress reduction. These interventions may assist in improving overall quality of life by reducing mental and physical distress and encouraging emotional wellbeing through various strategies that can be used during the progression of PD. Additionally, incorporating regular re-evaluations for CB and QoL at routine medical appointments allows for caregiver providers to detect how CB may change over time as PD severity level increases to provide proper referrals and treatment options. Furthermore, follow-up assessments throughout their caregiving role can observe sustained change over time and effectiveness of interventions implemented to identify what skills or tools may be needed. Family-Based interventions for informal caregivers for PD. Interventions that are family based may address the emotional, physical, and behavioral difficulties caregivers experience in response to dementia, psychosis, and mobility impairment of the PD patient. Noted previously, researchers indicated that communicating with ones family can assist a caregiver in stating what kind of help they may need as well as receiving emotional support (Stringer, 2017). Further, Zarit (2014) indicated that family involvement and support also decreased depressive symptoms for the caregiver. Thus, family-based interventions that address strategies and education regarding how to respond to the gradual progression of PD symptoms might assist in ways to shorten emotional and/or physical outbursts, maintain a safe setting for the patient and family members, create an environment of comfort and calmness to reduce tension, and develop a plan of when one should call for emergency aid or utilize acute care services may reduce CB. As noted earlier, researchers indicated that a positive and available social support network can immensely decrease CB (Miller et al., 1996). Therefore, family-based interventions that increase societal support and understanding regarding CB may assist informal caregivers in maintaining healthy and consistent engagement with their support network. Assessment of informal caregivers for PD. Based on the vast number of stressors informal caregivers for individuals with PD experience across cultures, assessment is crucial in accurately identifying their needs to be able to implement effective treatment. This study proposes that the construction and development of assessments that measure CB for PD need to take into consideration the specific factors across cultures that are contributing to CB. Particular variables that should be measured for this population when assessing CB include the informal caregivers level of social support, financial and physical burden, emotional state, self-care, informal caregivers knowledge of PD and caregiving role, and level of preparation for taking on the caregiving role. In terms of understanding the impact of the PD patient on the informal caregiver, variables measuring the informal caregivers perspective on the PD patients level of severity, mobility functioning, cognitive functioning, and emotional state can help determine what specific factors of a PD patients functioning are influencing CB as well. Additionally, implementing routine depression screenings for individuals that identify as informal caregivers for chronic diseases during primary care appointments may assist in detecting when depression is present related to CB. These screenings can begin the conversation regarding proper treatment and referral to mental health services. In addition, caregivers may become knowledgeable of resources available to them and ways to reduce CB. Previous research identified language to be the most significant barrier for caregivers as a result of the inability to communicate their needs, learn knowledge about services, and establish a trusting relationship with medical providers (McCallion et al., 1997). Ideally, depression screenings would be developed based on cultural conception of depression with the use of proper terms. Thus, primary care providers should become familiar with how depression is experienced emotionally and somatically to communicate effectively and accurately with informal caregivers across cultures. Furthermore, measuring how ones culture influences their caregiving role is significant to enhance sensitivity and appreciation for a persons background and tradition. Qualitative assessments may provide deeper insight into understanding the impact of culture on an informal caregivers role in terms of societal support and acceptance, financial concerns, access to healthcare, perspective of the caregiving role, and attitude or beliefs towards chronic conditions. In sum, CB is complex and creates a magnitude of stressors for informal caregivers for individuals with PD. Thus, assessments need to be developed that target specific factors that caregivers across cultures are experiencing to implement the most effective interventions to reduce CB. Womens needs as informal caregivers. Moreover, the study emphasizes the importance of taking into consideration commonalities that appear for informal caregivers for PD across cultures, such as females being the dominant gender to engage in the caregiving role. For example, researchers suggested that the predominant caregiver in Nigeria appeared to be a female spouse, employed or a housewife, and permanently took care of the PD patient (Ojagbemi, 2013). Therefore, the research implicated that in Nigeria the caregiver role is expected to be performed perpetually by the female in the family. Additionally, the researchers suggested that traditionally women have a social obligation to take on the role as the caregiver in India as well (Sanyal et al., 2015). Likewise, researchers in Spain and the UK indicated that female caregivers experienced a significant decrease in QoL compared to male caregivers for PD and experience more vulnerability in the caregiving role (Martinez-Martin et al., 2005 Morley et al., 2012). In sum, several countries indicate that females are engaging in the caregiving role by reason of social or cultural obligations, which emphasizes the importance of targeting interventions towards the needs of this gender cohort. Further research is required to understand a foundational basis of what aspects are needed for female informal caregivers for individuals with PD across cultures. Subsequently, a tailored and directive approach that is gender-based and theoretically derived may assist female informal caregivers in reducing CB by identifying gender and culture specific barriers and developing strategies that meet their emotional, social, and physical needs. Moreover, providing education to professionals regarding the healthcare needs of women and incorporating theories from psychology of women cross-culturally is required as a result of the majority of informal caregivers identifying as women. Preventative care for informal caregivers. Preventative care for informal caregivers for PD is an additional clinical implication that this study draws attention towards. Developing and implementing preventative care for informal caregivers across cultures can assist informal caregivers in the early stages of PD and decrease CB in the more advanced stages of PD. More specifically, the research suggests that the longer a caregiver engages in the caregiving role, the more CB an individual may experience across countries. In addition, research suggests that as PD advances, the more burdensome the responsibilities of the caregiver become. Therefore, preventative care is vital to assess and prevent the risk of experiencing severe CB and provide tools and skills to manage CB for informal caregivers as PD gradually progresses. A suggestion for preventative care includes providing informal caregivers at the onset of PD symptoms with support groups or group psychotherapy that consist of individuals engaging in the informal caregiving role for PD from similar cultural backgrounds. Engaging in support groups or group psychotherapy can provide the informal caregiver for PD to feel less isolated and alone, increase control and empowerment in ones abilities, expand their social network, learn coping skills and strategies to reduce CB, and be able to express difficult and vulnerable emotions in an accepting and safe environment with others experiencing similar life circumstances. Thus, the development of program evaluations for support groups and/or group psychotherapy that target informal caregivers for individuals with PD across specific cultures and their needs can decrease CB and increase ones societal support, acceptance, and confidence to engage in the caregiving role as well as have access to other resources in their specific environment. Another suggestion, refers to the coordination of multiple caregivers to reduce CB. Previous research by the National Family Caregiver Support Program (2016) indicated that approximately 22 of informal caregivers are providing care for two recipients and 8 are providing care for three or more recipients. Therefore, implementing secondary caregivers within a family unit may reduce CB by distributing the responsibilities amongst multiple individuals. However, this would require exploration of family dynamics based on culture to gain clarity on who typically engages in the caregiving role due to cultural expectations and obligations. By understanding how culture plays a role in who is the primary caregiver, care providers can learn skills and tools to target that population to encourage sharing responsibilities with others to reduce their personal caregiver strain. Overall, care providers must become educated on family dynamics across cultures to create this coordination of multiple caregivers and provide assertiveness training to individuals who typically take on the caregiving role independently. Assertiveness training may provide caregivers with the necessary interpersonal skills to effectively express their needs, while using conflict resolution skills, goal-setting, and stress management to reduce CB and advocating for oneself to receive help from others (Davidson Wood, 2004). Lastly, preventative care ought to include assisting informal caregivers for individuals with PD in developing a self-care plan at the onset of PD that can be carried out throughout the course of the disease to reduce CB. The research indicates that informal caregivers experience a decrease in engaging in a healthy lifestyle for themselves due to the immense number of tasks they have to complete for the recipient of care, which becomes worse gradually overtime. Thus, implementing a self-care plan that takes into consideration ones social, physical, emotional, religious, cultural, and interpersonal needs that tend to reduce over time can assist in reducing CB and improve their overall quality of life. Holistic approach to caring for informal caregivers. An interdisciplinary approach can also serve as a preventative method by coordinating care amongst professionals for the PD patient and informal caregiver. Research indicates that an interdisciplinary method is becoming more of a requirement as a result of that population becoming older and experiencing chronic diseases such as PD (Nancarrow et al., 2013). Therefore, to meet the complexity of PD, a multi-professional team are better equipped to provide the necessary treatment, skills, and education to meet the diverse needs of the PD patient and informal caregiver. Moreover, identifying the informal caregiver as a patient themselves may influence this population to seek out services and treatments to reduce CB and acknowledge their health is as important as the recipient of care. Overall, this study suggests that utilizing an interdisciplinary team that looks through a holistic lens may meet the physical, emotional, mental, and spiritual needs of this population, which in the end influences caregiving to performed in a more effective and healthy way for the PD patient. Ultimately, implementing a team approach with multiple healthcare providers, an informal caregiver for PD can receive care that is collaborative and working towards a common goal of each individual functioning to their fullest potential. Developing cultural competence among interdisciplinary care providers. To conclude, each research question identified several shared factors across cultures contributing to CB with PD as it related to QoL of the informal caregiver, level of severity of PD, and mobility functioning of the PD individual. Thus, this study focuses on various aspects of CB that appeared to be consistent across a few and/or all of the research questions. Specifically, level of severity of PD, duration of informal caregiving for PD, financial burden, mood state of the informal caregiver of PD, and executive and cognitive functioning of PD were factors contributing to CB amongst various cultures. For that reason, additional research is needed to examine the specific needs along these factors to develop broad interventions that can be generalized to the overall population to assist in managing and decreasing CB of informal caregivers for individuals with PD. Overall, these findings are remarkable in the sense that CB with PD is a shared universal experience despite cultural differences, as the studies examined were located in separate countries with their own distinctive standard of living, beliefs, and institutionalized systems. Therefore, CB impacts a vast number of informal caregivers for individuals with PD globally, which further emphasizes the overwhelming importance of expanding the research and implementing beneficial and effective interventions for this population. Study Strengths Although preliminary, to our knowledge this is the first systematic literature review examining CB of informal caregivers for individuals with PD across cultures. Therefore, this study researched a topic that needs more attention. Indeed, within the US alone, only 1 of published papers focus on CB in PD (Pasetti et al., 2003). This study also identified key questions needed to implement future research regarding PD and CB for informal caregivers across cultures. Specifically, this study emphasized the impact CB has on the QoL of informal caregivers for individuals with PD and identified shared and unique factors across cultures. In addition, this study examined the shared and unique factors of CB impacted by the level of severity of PD and mobility functioning of the PD patient for informal caregivers across cultures. Thus, this study acknowledged a significant number of factors that contribute to CB across several countries, which is indicative of CB being a universal and shared experience. Further, this literature review highlighted the importance of multicultural consideration for future assessment and interventions to meet the diverse needs for the population of informal caregivers for individuals with PD. Moreover, the development of assessments that measure specific factors informal caregivers experience is needed to implement the most effective interventions to reduce CB. Furthermore, another strength of this study includes the exclusion criteria for the studies examined. Specifically, studies that included informal caregivers categorized as professional and paid were excluded from this literature review to eliminate the results being impacted by confounding variables and ensured the researchers were explicitly examining informal caregivers. As a result of the lack of research focused on informal caregivers for individuals with PD across cultures, informal caregivers were the main objective for this study. In addition, informal caregivers are known to be called the hidden patients due to lack of acknowledgment of their need for support (Fengler Goodrish, 1979 Kristjanson, Linda, Aoun, 2004). Thus, this study aspired to lay a foundation for future directions in assessment and interventions for this population whom experiences psychological, physical, and financial distress that impairs their overall well-being, which ultimately creates more difficulty in caring for the PD patient. Study Limitations It is important to consider the limitations present in this systematic literature review. First, literature reviews may be seen as a file drawer problem also known as publication bias, which implies that empirical literature, is subjective because nonsignificant research results are not broadcasted (Rosenthal, 1979 Salkind, 2010). Thus, literature reviews may emphasize more significant results than are actually present and file away results that fail to reject the null hypothesis to strengthen the overall findings (Rosenthal, 1979 Salkind, 2010). In sum, readers are not exposed to the nonsignificant results in literature reviews. Nevertheless, the file drawer limitation emphasizes the importance of literature reviews to establish reasonable boundaries to prevent publication bias. Journals having the requirement that studies must be submitted for publication prior to collecting and analyzing data can reduce publication bias for future literature reviews to avoid false-positive results. Overall, researchers should continue to be encouraged to conduct literature reviews with integrity, honesty, and accuracy to minimize publication bias in future studies. Additionally, studying a specific disorder, such as PD, with the majority of the countries having only one study in the literature examining CB for informal caregivers, questions generalizability of the results to the overall population. In addition, generalizing the results to the overall population becomes difficult as a result of not having a clear depiction of what CB looks like across cultures for informal caregivers for PD due to the limited amount of research conducted in each country. Furthermore, the informal caregivers for PD for each study identified as middle to older adults, which is not representative of the general age population that may engage in the caregiving role. Also, the majority of the studies had a substantial higher percentage of female caregivers reported. Therefore, the results may not generalize across different age and gender cohorts. Moreover, the studies included in this systematic literature review were comparable, in that they examined the same population (i.e., individuals diagnosed with PD and informal caregivers for PD), while using various assessments to measure CB, QoL, and mental and physical functioning of the PD patient and caregiver. While most of the studies assessed outcomes at one point in time in order to research the level of CB at various stages of PD, the degree to which the studies are clinically and methodologically homogeneous is questionable. Furthermore, the definition used for CB (i.e., refers to the physical, psychological, and social stressors a caregiver experiences due to caring for a patient with a severely persistent disease (Martinez-Martin et al., 2007) in each study has no consensus on what should specifically be measured. Thus, this systematic literature review incorporated studies with a less restrictive definition of CB due the limited research available reviewing this topic. In sum, the studies non-homogeneity of methodology and CB description influences variance of the results. A limitation that can also be highlighted denotes to the majority of the studies reviewed identifying as cross-sectional, resulting in casual relations not being displayed. Therefore, examining how CB may affect informal caregivers across cultures overtime can assist the current literature in understanding a well representation of the impact of CB of informal caregivers for individuals with PD. Hence, a longitudinal study that directly examines the relation found between CB and stages of PD cross culturally can assist in this limitation to gain a better understanding of CB for PD. Future Directions for Research The findings of this study highlight the importance of continuing the examination of CB of informal caregivers for individuals with PD across cultures. It should be noted that research targeting CB of informal caregivers for individuals with PD in the literature is significantly scarce with approximately only 1 of published papers focusing on CB in PD in the US (Pasetti et al., 2003). Moreover, as a result of the increase of ethnic or racial minority populations in the US, APA recognizes that multicultural competence is necessary to meet the various needs of the communities (Sue, Zane, Hall, Berger, 2009). Therefore, additional examination focused on CB for informal caregivers across all countries is required to be able to identify reliable and valid results indicating the needs of informal caregivers for individuals with PD, while taking into consideration cultural differences. To address the limitations of this study, conducting and gathering more research regarding CB of informal caregivers for individuals with PD in specific cultures can expand knowledge regarding the needs of each culture and assist in developing tailored and effective interventions to reduce CB. Thus, expanding the literature targeting CB, can assist future researchers to operationalize constructs in a stricter manner to increase homogeneity and reduce variance in results. In addition, future researchers can use a larger and more representative sample, such as exploring disorders similar to PD with informal caregivers of both genders and all age groups can help increase the external validity of the findings and expand the generalization of the results. Overall, the need to improve healthcare, as a result of an increase in cultural diversity, emphasizes the importance for mental health providers to increase multicultural competence and be aware of how culture impacts treatment. By expanding on the current literature regarding CB of informal caregivers for individuals with PD, another future direction includes developing and implementing interventions, workshops, seminars, and/or program evaluations that address the lack of resources the research consistently identifies across cultures to reduce and manage CB. Furthermore, longitudinal research focusing on CB of informal caregivers for individuals with PD may support the preliminary findings of this study and enhance the limited research already conducted on CB of informal caregivers for individuals with PD. In sum, utilizing the results of this study can provide a foundation in understanding the shared and unique factors across cultures related to CB and be extended through future research to address the needs of this population and increase multicultural competency related to informal caregivers for PD across cultures. Summary PD is a progressive neurological disorder with several motor and non-motor characteristics that increasingly deteriorate, leading to a need for informal caregivers. Consequently, informal caregivers experience stressors attributable to caring for a person with a chronic disease, and these stressors are termed caregiver burden CB. CB significantly influences informal caregivers for individuals with PD across cultures to experience physical, psychological, financial, and social stressors caused by caring for an individual with a severely persistent disease. Therefore, cross-cultural examination is important to understand how various cultural factors contribute to CB with PD to assist in developing effective interventions for caregivers and addressing their needs and barriers of care based on their distinctive characteristics. The purpose of this study was to understand the relation of CB on informal caregivers for individuals with PD across different cultures. The study was designed to systematically examine the factors that contribute to informal CB in caregivers of individuals with PD with four specific research questions. The study was also designed to expand on and bring together the existing literature regarding CB of informal caregivers for individuals with PD across cultures. Specifically, this study reviewed the shared and unique factors of CB across countries in terms of informal caregivers QoL, level of severity of PD, and mobility functioning of the PD patient. The results of this study indicated that based on the 11 empirical studies reviewed for research question 1, What factors contribute to informal CB with PD across various countries reviewed a. What shared factors appear to contribute to informal CB with PD across various countries reviewed b. What unique factors appear to contribute to informal CB with PD across various countries reviewed, disease duration, level of behavioral symptoms and cognitive dysfunction, level of severity, duration of informal caregiving, and mood state of informal caregivers appear to be shared factors that contribute to CB across cultures (i.e., US, Australia, Tanzania, Nigeria, Brazil, Italy, South Korea, India, UK, and Spain). In addition, the studies indicated unique factors (i.e., sleep disturbance Brazil, financial issues India, and lack of social support Singapore) to certain countries that influence CB. In terms of the eight empirical studies reviewed for research question 2, Does informal CB impact the QoL of informal caregivers for individuals with PD across countries reviewed a. Which countries appear to have shared factors of CB with PD impacting QoL b. Which countries appear to have unique factors of CB with PD impacting QoL, studies indicated that certain countries (i.e., Brazil, UK, Spain, Belgium, and US) experience shared CB with PD factors associated with QoL (i.e., depression of informal, disease severity, and mobility impairment), whereas other countries (i.e., Belgium, UK, and Australia) experience unique factors (i.e., functional dependency Belgium, psychological dysfunction Belgium, behavioral problems related to executive functioning UK, health-related QoL Australia, and duration of informal caregiving UK). Furthermore, the eight empirical studies reviewed for research question 3, Does the severity of a patients symptoms of PD (i.e., depression, psychosis, executive functioning, and physical impairment) impact informal CB across countries reviewed a. Which countries appear to have shared factors of CB impacted by the severity of a patients symptoms of PD b. Which countries appear to have unique factors of CB impacted by the severity of a patients symptoms of PD, indicated that certain countries (i.e., South Korea, India, Spain, Brazil, Italy, UK, and US) experience shared factors (i.e., depression of informal caregiver, psychosis, more advanced stages, executive functioning impairment , and financial and physical burden) related to CB of informal caregiving for PD associated with severity of PD symptoms, whereas other countries (i.e., US and Brazil) experience unique factors including severity of PD and social constraints US and sleep disturbance Brazil. Lastly, the six empirical studies reviewed for research question 4, Does the mobility of a patient with PD impact informal CB across countries reviewed a. Which countries appear to have shared factors of CB impacted by the mobility of a PD patient b. Which countries appear to have unique factors of CB impacted by the mobility of a PD patient, indicated that certain countries (i.e., India, Nigeria, and US) experience shared factors (i.e., increased caregiver strain and cognitive impairment) associated with mobility function of the PD patient that influence CB with PD, whereas other countries (i.e., US and Singapore) experience unique factors (i.e., depression of informal caregiver US and anxiety of informal caregiver Singapore). Overall, the results indicate that a caregiver experiences an increase in responsibilities as the PD patients functioning declines and becomes more dependent onto the caregiver (McLaughlin et al., 2011). Thus, the results support the notion that caregiving is an exhaustive role involving extreme CB of psychological, physical, and financial distress that is impacted by an individuals cultural background and environment (NFCSP, 2000 Smith, Smith, Toseland, 1991). Recognizing that the current study is limited based on minimal research available across cultures for CB of informal caregivers for individuals with PD this study provides several clinical implications beginning with a need to increase education and community awareness about PD. Specifically, past research indicated that informal caregivers for individuals with PD experience uncertainty regarding how to prepare for the progression of PD and manage stress. Therefore, increasing education and awareness of PD and CB for informal caregivers across cultures is needed. Inevitably, more research is required across cultures to identify their distinctive needs, which could lead to caregiver training programs, group psychotherapy, workshops, seminars, and support groups implementing more specific self-care and preventative methods to reduce CB as PD progresses. Overall, providing education and awareness regarding PD and CB can assist caregivers in preparation for the caregiving role and implement skills and tools to decrease CB. This study also suggests that there is a need for mental healthcare providers to achieve multicultural competence and how it relates to informal caregivers for individuals with PD. Specifically, informal caregivers for individuals with PD across cultures indicated being surrounded by poor resources for the older adult population in need of higher-level care and lack of social support. Thus, the need to improve healthcare, as a result of an increase in cultural diversity, has triggered the movement towards multicultural competence for mental health professionals. Further, the demand for psychologists to achieve multicultural competence within the older adult population will continuously increase due to the older population living longer and becoming more diverse (Karel, Gatz, Smyer, 2012). As a result of statistics demonstrating 22 of caregivers are over 50-years-old and the onset of PD is commonly 50-years-old, taking into consideration unique cultural factors of the older adult population across countries can increase multicultural competence within the age group and expand on what exclusive needs informal caregivers for individuals with PD require based on their distinctive cultural values and beliefs (NFCSP, 2000). In sum, the research consistently demonstrates that psychologists abilities to meet the required demands of the older population in the upcoming years will not be met (Karel et al., 2012 Qualls, Segal, Norman, Niederehe, Gallagher-Thompson, 2002). This study proposes that care providers must achieve multicultural competence in working with diverse cohorts of informal caregivers for individuals with PD across cultures because of the significant impact culture has on an individuals beliefs towards caring for an individual experiencing PD. An additional clinical implication of this study refers to increasing awareness of the role of informal caregivers in general. CB is experienced across cultures for various disorders, which emphasizes the importance of identifying what resources are needed to reduce CB universally to assist this population in functioning to their fullest potential. Therefore, informal caregivers across several disorders are experiencing CB, which is impairing their ability to function daily. Informal caregivers across cultures require additional research to identify how their specific culture influences CB and how interventions can be developed to reduce CB in general. Preventative care for informal caregivers for PD is an additional clinical implication that this study draws attention towards. Developing and implementing preventative care for informal caregivers across cultures can assist informal caregivers in the early stages of PD and decrease CB in the more advanced stages of PD. A suggestion for preventative care includes providing informal caregivers at the onset of PD symptoms with support groups or group psychotherapy that consist of individuals engaging in the informal caregiving role for PD from similar cultural backgrounds. Thus, the development of program evaluations for support groups and/or group psychotherapy that target informal caregivers for individuals with PD across specific cultures and their needs can decrease CB and increase ones societal support. An interdisciplinary approach can also serve as a preventative method by coordinating care amongst professionals for the PD patient and informal caregiver. Research indicates that an interdisciplinary method is becoming more of a requirement as a result of that population becoming older and experiencing chronic diseases such as PD (Nancarrow et al., 2013). Therefore, to meet the complexity of PD, a multi-professional team are better equipped to provide the necessary treatment, skills, and education to meet the diverse needs of the PD patient and informal caregiver. Lastly, each research question identified several shared factors across cultures contributing to CB with PD as it related to QoL of the informal caregiver, level of severity of PD, and mobility functioning of the PD individual. These findings are remarkable in the sense that CB with PD is a shared universal experience despite cultural differences, as the studies examined were located in separate countries with their own distinctive standard of living, beliefs, and institutionalized systems. Therefore, CB impacts a vast number of informal caregivers for individuals with PD globally, which further emphasizes the overwhelming importance of implementing beneficial and effective interventions for this population. In conclusion, to our knowledge this is the first systematic literature review examining CB of informal caregivers for individuals with PD across cultures. Therefore, this study researched a topic that needed more attention. This study identified key research questions needed to implement future research regarding PD and CB for informal caregivers across cultures. Specifically, this study emphasized shared and unique factors of PDs impact on informal caregivers quality of life, how severity of PD and patients mobility functioning contributed to CB and identified the needs that arise for informal caregivers within a cross-cultural context. Thus, this study recognized a significant number of factors that contribute to CB across several countries, which is indicative of CB being a universal and shared experience, despite distinctive cultural differences. Utilizing the results of this study can provide a foundation in understanding the factors across cultures related to CB and be extended through future research to address the needs of this population and increase multicultural competency related to informal caregivers for PD across cultures. References Aarsland, D., Beyer, M. K., Kurz, M. W. (2008). Dementia in Parkinsons disease.Current opinion in Neurology,21(6), 676-682. Aarsland, D., Andersen, K., Larsen, J. P., Lolk, A. (2003). Prevalence and characteristics of dementia in Parkinson disease An 8-year prospective study. Archives of Neurology, 60(3), 387-392. Aarsland, D., Andersen, K., Larsen, J. P., Lolk, A., Nielsen, H., KraghSrensen, P. (2001). Risk of dementia in Parkinsons disease A community-based, prospective study. Neurology, 56(6), 730-736. Aarsland, D., Larsen, J. P., Karlsen, K., Lim, N. G., Tandberg, E. (1999). Mental symptoms in Parkinsons disease are important contributors to caregiver distress. International Journal of Geriatric Psychiatry, 14(10), 866-874. Aarsland, D., Tandberg, E., Larsen, J. P., Cummings, J. L. (1996). Frequency of dementia in Parkinson disease. Archives of Neurology, 53(6), 538-542. Abramson, T. A., Trejo, L., Lai, D. W. (2002). Culture and mental health Providing appropriate services for a diverse older population. Generations, 26(1), 21. Acampo, L. E. I., Spliethoff-Kamminga, N. G. A., Macht, M., Roos, R. A. C., EduPark Consortium. (2010). Caregiver education in Parkinsons disease Formative evaluation of a standardized program in seven European countries.Quality of Life Research,19(1), 55-64. Aggarwal, M., Avasthi, A., Kumar, S., Grover, S. (2011). Experience of caregiving in schizophrenia A study from India.International Journal of Social Psychiatry,57(3), 224-236. Alcalay, R., Levy, O., Waters, C., Fahn, S., Ford, B., Kuo, S. H., … Gan-Or, Z. (2015). Glucocerebrosidase activity in Parkinson disease with and without GBA mutations (S7. 003).Neurology,84(14 Supplement), S7-003. Ali, F. R. Ward, S. M. (2011). Parkinsons disease Caring for the carers. Journal of Midlife Beyond. 22-25. Alvarez, R. P., Biggs, A., Chen, G., Pine, D. S., Grillon, C. (2008). Contextual fear conditioning in humans Cortical-hippocampal and amygdala contributions. Journal of Neuroscience, 28(24), 6211-6219. Alves, G., Forsaa, E. B., Pedersen, K. F., Gjerstad, M. D., Larsen, J. P. (2008). Epidemiology of Parkinsons disease. Journal of Neurology, 255(5), 18-32. Alzheimers Association. (2011). 2011 Alzheimers disease facts and figures. Alzheimers dementia. The Journal of the Alzheimers Association, 7(2), 208. American Academy of Family Physicians. (2018). Primary care. Retrieved from https//www.aafp.org/ about/policies/all/primary-care.html American Psychological Association. (2010a). Ethical principles of psychologists and code of conduct. Washington, DC. American Psychological Association. (2010b). Guidelines on multicultural education, training, research, practice and organizational change for psychologists. Washington, DC. American Psychological Association. (2010). Ethical principle of psychologists and code of conduct. Retrieved from http//www.apa.org/ethics/code/ American Psychiatric Association. (2013). DSM 5. American Psychiatric Association. American Psychological Association. (2014). Guidelines for psychological practice with older adults. The American Psychologist, 69(1), 34. Amirnovin, R., Williams, Z. M., Cosgrove, G. R., Eskandar, E. N. (2004). Visually guided movements suppress subthalamic oscillations in Parkinsons disease patients.Journal of Neuroscience,24(50), 11302-11306. Anderson, C. S., Linto, J., Stewart-Wynne, E. G. (1995). A population-based assessment of the impact and burden of caregiving for long-term stroke survivors. Stroke, 26(5), 843-849. Aneshensel, C. S., Pearlin, L. I., Mullan, J. T., Zarit, S. H., Whitlatch, C. J. (1995). Profiles in caregiving The unexpected career. Academic Press. Antonini, A., Odin, P. (2009). Pros and cons of apomorphine and L-dopa continuous infusion in advanced Parkinsons disease. Parkinsonism Related Disorders, 15, S97-S100. Askenasy, J. J. M. (2003). Sleep disturbances in Parkinsonism. Journal of Neural Transmission, 110(2), 125-150. Atilano, M. (2017). Benefits of conducting a literature review. Retrieved from HYPERLINK http//libguides.unf.edu/c.phpg177129p1163732 http//libguides.unf.edu/c.phpg177129p1163732 Au, W. L., Adams, J. R., Troiano, A. R., Stoessl, A. J. (2005). Parkinsons disease In vivo assessment of disease progression using positron emission tomography. Molecular Brain Research, 134(1), 24-33. Avila, R., Bottino, C. M. C., Carvalho, I. A. M., Santos, C. B., Seral, C., Miotto, E. (2004). Neuropsychological rehabilitation of memory deficits and activities of daily living in patients with Alzheimers disease A pilot study. Brazilian Journal of Medical and Biological Research, 37(11), 1721-1729. Barbeau, A. (1969). L-dopa therapy in Parkinsons disease A critical review of nine years experience. Canadian Medical Association Journal, 101(13), 59. Baumeister, R. F. (2013). Writing a literature review. In The Portable Mentor (pp. 119-132). Springer New York. Baumeister, R. F., Leary, M. R. (1997). Writing narrative literature reviews. Review of General Psychology, 1(3), 311. Beach, S. R., Schulz, R., Yee, J. L., Jackson, S. (2000). Negative and positive health effects of caring for a disabled spouse Longitudinal findings from the caregiver health effects study. Psychology and Aging, 15(2), 259. Beal, M. F. (2004). Mitochondrial dysfunction and oxidative damage in Alzheimers and Parkinsons diseases and coenzyme Q 10 as a potential treatment. Journal of Bioenergetics and Biomembranes, 36(4), 381-386. Berry, J. W. (1997). Immigration, acculturation, and adaptation. Applied Psychology, 46(1), 5-34. Bhimani, R. (2014). Understanding the burden on caregivers of people with Parkinsons A scoping review of the literature. Rehabilitation Research and Practice, 2014. Blakley, B., Jaffe, J. (1999). Coping as a rural caregiver The impact of health care reforms on rural women informal caregivers. Winnipeg Prairie Centre of Excellence for Womens Health. Boonstra, T. A., van der Kooij, H., Munneke, M., Bloem, B. R. (2008). Gait disorders and balance disturbances in Parkinsons disease Clinical update and pathophysiology. Current Opinion in Neurology, 21(4), 461-471. Bov, J., Prou, D., Perier, C., Przedborski, S. (2005). Toxin-induced models of Parkinsons disease. NeuroRx, 2(3), 484-494. Braak, H., Braak, E. (1995). Staging of Alzheimers disease-related neurofibrillary changes. Neurobiology of Aging, 16(3), 271-278. Bracke, P., Christiaens, W., Wauterickx, N. (2008). The pivotal role of women in informal care. Journal of Family Issues, 29(10), 1348-1378. Brewer, M. L. (2017). Providing culturally sensitive dementia care. Alzheimers association. Retrieved from http//www.alz.org/resources/diversity/downloads/about_culturally sensitivedementiacare.pdf Brodaty, H., Donkin, M. (2009). Family caregivers of people with dementia. Dialogues in Clinical Neuroscience, 11(2), 217. Brodaty, H., Thomson, C., Thompson, C., Fine, M. (2005). Why caregivers of people with dementia and memory loss dont use services. International Journal of Geriatric Psychiatry, 20,537-546. Brod, M., Mendelsohn, G. A., Roberts, B. (1998). Patients experiences of Parkinsons disease. The Journals of Gerontology Series B Psychological Sciences and Social Sciences, 53(4), P213-P222. Bronfenbrenner, U. (1979). Contexts of child rearing Problems and prospects. American Psychologist, 34(10), 844. Brooks, D. J., Frey, K. A., Marek, K. L., Oakes, D., Paty, D., Prentice, R., … Stoessl, A. J. (2003). Assessment of neuroimaging techniques as biomarkers of the progression of Parkinsons disease. Experimental Neurology, 184, 68-79. Brownlee, H. J. (2008). Parkinson Disease in Primary Practice. Consultant. Brown, S. L., Smith, D. M., Schulz, R., Kabeto, M. U., Ubel, P. A., Poulin, M., … Langa, K. M. (2009). Caregiving behavior is associated with decreased mortality risk. Psychological Science, 20(4), 488-494. Bunting-Perry, L. K. (2006). Palliative care in Parkinsons disease Implications for neuroscience nursing. Journal of Neuroscience Nursing, 38(2), 106-113. Carod-Artal, F. J., Mesquita, H. M., Ziomkowski, S., Martinez-Martin, P. (2013). Burden and health-related quality of life among caregivers of Brazilian Parkinsons disease patients. Parkinsonism Related Disorders, 19(11), 943-948. Carter, J. H., Stewart, B. J., Lyons, K. S., Archbold, P. G. (2008). Do motor and nonmotor symptoms in PD patients predict caregiver strain and depression. Movement Disorders, 23(9), 1211-1216. Chappell, N. L., Penning, M. (1996). Behavioural problems and distress among caregivers of people with dementia. Ageing Society, 16(1), 57-73. Chappell, N. L., Reid, R. C. (2002). Burden and well-being among caregivers Examining the distinction. The Gerontologist, 42(6), 772-780. Chang, E. (2017). Parkinsons and alzheimers disease Similar but very different. Retrieved from HYPERLINK http//www.alznyc.org/nyc/newsletter/fall2012/06.asp http//www.alznyc.org/nyc/newsletter/fall2012/06.asp Chaudhuri, J. D., Das, S. (2006). The Role of Caregivers in the Management of Alzheimers disease Examples from Asian Countries. Sultan Qaboos University Medical Journal, 6(2), 1118. Chaudhuri, K. R., Healy, D. G., Schapira, A. H. (2006). Non-motor symptoms of Parkinsons disease Diagnosis and management. The Lancet Neurology, 5(3), 235- 245. Chaudhuri, K. R., Martinez-Martin, P., Brown, R. G., Sethi, K., Stocchi, F., Odin, P., … Barone, P. (2007). The metric properties of a novel non-motor symptoms scale for Parkinsons disease Results from an international pilot study. Movement Disorders, 22(13), 1901-1911. Clark, J. A., Weber, K. A. (1997). Challenges and Choices Elderly Caregiving. Department of Human Development and Family Studies, University of Missouri. Reviewed July. Clarke, C. E., Zobkiw, R. M., Gullaksen, E. (1994). Quality of life and care in Parkinsons disease. The British Journal of Clinical Practice, 49(6), 288-293. Clyburn, L. D., Stones, M. J., Hadjistavropoulos, T., Tuokko, H. (2000). Predicting caregiver burden and depression in Alzheimers disease. Journals of Gerontology series b, 55(1), S2-S13. Connell, C. M., Gibson, G. D. (1997). Racial, ethnic, and cultural differences in dementia caregiving Review and analysis. The Gerontologist, 37(3), 355-364. Cooper, H. M. (1998). Synthesizing research A guide for literature reviews (Vol. 2). Sage. Covinsky, K. E., Goldman, L., Cook, E. F., Oye, R., Desbiens, N., Reding, D., … Baker, R. (1994). The impact of serious illness on patients families. Jama, 272(23), 1839-1844. Crowther, M. R., David, S., DiGilio, D., Elmore, D., Molinari, V., Qualls, S. H., Tazeau, Y. N. (2009). Multicultural competency in geropsychology. In a Report of the APA Committee on Aging and its Working Group on Multicultural Competency Geropsychology. Retrieved from HYPERLINK http//www.apa.org/pi/a http//www.apa.org/pi/a ging/programs/pipeline /multicultural-competency.pdf DAmelio, M., Terruso, V., Palmeri, B., Di Benedetto, N., Famoso, G., Cottone, P., … Savettieri, G. (2009). Predictors of caregiver burden in partners of patients with Parkinsons disease. Neurological Sciences, 30(2), 171-174. Damskey, M. (2000). Views and visions Moving toward culturally competent practice. Therapeutic interventions with ethnic elders Health and Social Issues, 195-208. Dauer, W., Przedborski, S. (2003). Parkinsons disease Mechanisms and models. Neuron, 39(6), 889-909. Davidson, J., Wood, C. (2004). A conflict resolution model.Theory into Practice,43(1), 6- 13. Davie, C. A. (2008). A review of Parkinsons disease. British Medical Bulletin, 86(1), 109- 127. De Lau, L. M., Koudstaal, P. J., Hofman, A., Breteler, M. M. (2006). Serum cholesterol levels and the risk of Parkinsons disease. American Journal of Epidemiology, 164(10), 998-1002. Demeulemeester, F., De Letter, M., Miatton, M., Santens, P. (2015). Quality of life in patients with PD and their caregiving spouses A view from both sides. Clinical Neurology and Neurosurgery, 139, 24-28. Deumens, R., Blokland, A., Prickaerts, J. (2002). Modeling Parkinsons disease in rats An evaluation of 6-OHDA lesions of the nigrostriatal pathway. Experimental Neurology, 175(2), 303-317. Deuschl, G., Schade-Brittinger, C., Krack, P., Volkmann, J., Schfer, H., Btzel, K., … Gruber, D. (2006). A randomized trial of deep-brain stimulation for Parkinsons disease. New England Journal of Medicine, 355(9), 896-908. Dittmann, M. (2003). Maintaining ethics in a rural setting. Monitor on Psychology, 34(6), 66. Dixon, L., Duncan, D. C., Johnson, P., Kirkby, L., OConnell, H., Taylor, H. J., Deane, K. (2007). Occupational therapy for patients with Parkinsons disease. The Cochrane Library. Donaldson, C., Burns, A. (1999). Burden of Alzheimers disease Helping the patient and caregiver. Journal of Geriatric Psychiatry and Neurology, 12(1), 21-28. Dotchin, C. L., Paddick, S. M., Longdon, A. R., Kisoli, A., Gray, W. K., Dewhurst, F., … Walker, R. W. (2014). A comparison of caregiver burden in older persons and persons with Parkinsons disease or dementia in sub-Saharan Africa. International Psychogeriatrics, 26(04), 687-692. Edwards, N. E., Ruettiger, K. M. (2002). The influence of caregiver burden on patients management of Parkinsons disease Implications for rehabilitation nursing. Rehabilitation Nursing, 27(5), 182-186. Elizan, T. S., Sroka, H., Maker, H., Smith, H., Yahr, M. D. (1986). Dementia in idiopathic Parkinsons disease. Journal of Neural Transmission, 65(3), 285-302. Emre, M., Aarsland, D., Albanese, A., Byrne, E. J., Deuschl, G., De Deyn, P. P., … Poewe, W. (2004). Rivastigmine for dementia associated with Parkinsons disease. New England Journal of Medicine, 351(24), 2509-2518. Eisdorfer, C. (1991). Caregiving An emerging risk factor for emotional and physical pathology. Bulletin of the Menninger Clinic, 55(2), 238. Fahn, S., Elotion, R. (1987). UPDRS Program Members. Unified Parkinsons disease rating scale. vol 2. Florham Park. Factor, S. A., Feustel, P. J., Friedman, J. H., Comella, C. L., Goetz, C. G., Kurlan, R., … Parkinson Study Group. (2003). Longitudinal outcome of Parkinsons disease patients with psychosis. Neurology, 60(11), 1756-1761. Factor, S. A., Weiner, W. (2007). Parkinsons Disease Diagnosis Clinical Management. Demos Medical Publishing. Fast, J. E., Williamson, D. L., Keating, N. C. (1999). The hidden costs of informal elder care. Journal of Family and Economic Issues, 20(3), 301-326. Felson, D. T., Anderson, J. J., Hannan, M. T., Milton, R. C., Wilson, P. W., Kiel, D. P. (1989). Impaired vision and hip fracture. Journal of the American Geriatrics Society, 37(6), 495-500. Fnelon, G., Mahieux, F., Huon, R., Zigler, M. (2000). Hallucinations in Parkinsons disease. Brain, 123(4), 733-745. Fengler, A. P., Goodrich, N. (1979). Wives of elderly disabled men The hidden patients. The Gerontologist, 19,175-183. Fernandez, H. H., Tabamo, R. E., David, R. R., Friedman, J. H. (2001). Predictors of depressive symptoms among spouse caregivers in Parkinsons disease. Movement Disorders, 16(6), 1123-1125. Fung, H. H., Jiang, D. (2016). Cross-cultural psychology of aging. In Schaie, K. W., Willis, S. L. (Eds.). (2010). Handbook of the Psychology of Aging. (pp. 323-334). Academic Press. Gage, H., Storey, L. (2004). Rehabilitation for Parkinsons disease A systematic review of available evidence. Clinical Rehabilitation, 18(5), 463-482. General, S. (2001). Mental health Culture, race, and ethnicity. Supplement to mental health a report of the Surgeon General. Washington (DC) Government Printing Office. Giles, H., Coupland, N., Coupland, J., Williams, A., Nussbaum, J. (1992). Intergenerational talk and communication with older people. The International Journal of Aging and Human Development, 34(4), 271-297. Giroux, M. L. (2007). Parkinson disease Managing a complex, progressive disease at all stages. Cleveland Clinic Journal of Medicine, 74(5), 313. Goetz, C. G., Fahn, S., Martinez-Martin, P., Poewe, W., Sampaio, C., Stebbins, G. T., … Holloway, R. (2007). Movement Disorder Society-sponsored revision of the Unified Parkinsons Disease Rating Scale (MDS-UPDRS) Process, format, and clinimetric testing plan. Movement Disorders,22(1), 41-47. Goren, A., Montgomery, W., Kahle-Wrobleski, K., Nakamura, T., Ueda, K. (2016). Impact of caring for persons with Alzheimers disease or dementia on caregivers health outcomes Findings from a community based survey in Japan. BMC Geriatrics, 16(1), 122. Grand, J. H., Caspar, S., MacDonald, S. W. (2011). Clinical features and multidisciplinary approaches to dementia care.Journal of Multidisciplinary Healthcare,4, 125. Hawkes, C. H. (2008). The prodromal phase of sporadic Parkinsons disease Does it exist and if so how long is it. Movement Disorders, 23(13), 1799-1807. Heaton, R. K., Marcotte, T. D., Mindt, M. R., Sadek, J., Moore, D. J., Bentley, H., … Grant, I. (2004). The impact of HIV-associated neuropsychological impairment on everyday functioning. Journal of the International Neuropsychological Society, 10(03), 317-331. Heron, M. (2012). Deaths Leading causes for 2008. National Vital Statistics Reports From the Centers for Disease Control and Prevention, National Center for Health Statistics, National Vital Statistics System, 60(6), 1-94. Hoehn, M. M., Yahr, M. D. (1998). Parkinsonism Onset, progression, and mortality. Neurology, 50(2), 318-318. Holtgraves, T. (1997). Styles of language use Individual and cultural variability in conversational indirectness. Journal of Personality and Social Psychology, 73(3), 624. Huang, J. (2016). Lewy body dementia and Parkinson disease dementia. Amerck Manual. Hughes, T. A., Ross, H. F., Musa, S., Bhattacherjee, S., Nathan, R. N., Mindham, R. H. S., Spokes, E. G. S. (2000). A 10-year study of the incidence of and factors predicting dementia in Parkinsons disease. Neurology, 54(8), 1596-1603. Inzelberg, R., Kipervasser, S., Korczyn, A. D. (1998). Auditory hallucinations in Parkinsons disease. Journal of Neurology, Neurosurgery Psychiatry, 64(4), 533- 535. Iranzo, A., Molinuevo, J. L., Santamara, J., Serradell, M., Mart, M. J., Valldeoriola, F., Tolosa, E. (2006). Rapid-eye-movement sleep behaviour disorder as an early marker for a neurodegenerative disorder A descriptive study. The Lancet Neurology, 5(7), 572-577. Jackson, J. S., Govia, I. O., Sellers, S. L. (2011). Handbook of aging and the social sciences. Jankovic, J. (2008). Parkinsons disease Clinical features and diagnosis.Journal of Neurology, Neurosurgery Psychiatry,79(4), 368-376. Jankovic, J., Stacy, M. (2007). Medical management of levodopa-associated motor complications in patients with Parkinsons disease. CNS drugs, 21(8), 677-692. Jenner, P. (2003). Dopamine agonists, receptor selectivity and dyskinesia induction in Parkinsons disease.Current opinion in neurology,16, S3-S7. Johnson, C. C., Gorell, J. M., Rybicki, B. A., Sanders, K., Peterson, E. L. (1999). Adult nutrient intake as a risk factor for Parkinsons disease. International Journal of Epidemiology, 28(6), 1102-1109. Jones, N. A., Smith, A. S. (2001). The two or more races population, 2000(Vol. 8, No. 2). US Department of Commerce, Economics and Statistics Administration, US Census Bureau. Jubault, T., Brambati, S. M., Degroot, C., Kullmann, B., Strafella, A. P., Lafontaine, A. L., … Monchi, O. (2009). Regional brain stem atrophy in idiopathic Parkinsons disease detected by anatomical MRI. PloS one, 4(12), e8247. Karel, M. J., Gatz, M., Smyer, M. A. (2012). Aging and mental health in the decade ahead What psychologists need to know. American Psychologist, 67(3), 184. Kaslow, N. J. (2004). Competencies in professional psychology. American Psychologist, 59(8), 774. Keene, J. R., Prokos, A. H. (2008). Widowhood and the end of spousal care-giving Relief or wear and tear. Ageing and Society, 28(04), 551-570. Keller, A., Litzelman, K., Wisk, L. E., Maddox, T., Cheng, E. R., Creswell, P. D., Witt, W. P. (2012). Does the perception that stress affects health matter The association with health and mortality. Health Psychology, 31(5), 677. Kelly, D. H., McGinley, J. L., Huxham, F. E., Menz, H. B., Watts, J. J., Iansek, R., … Morris, M. E. (2012). Health-related quality of life and strain in caregivers of Australians with Parkinsons disease An observational study. BMC Neurology, 12(1), 57. Kidd, P. (2008). Alzheimers disease, amnestic mild cognitive impairment, and age- associated memory impairment Current understanding and progress toward integrative prevention. Alternative Medicine Review, 13(2), 85. Kimmel, D. C., Moody, H. R. (1990). Ethical issues in gerontological research and services. Kipp, W., Tindyebwa, D., Karamagi, E., Rubaale, T. (2013). Family caregiving to AIDS patients The role of gender in caregiver burden in Uganda. Journal of International Womens studies, 7(4), 1-13. Kopin, I. J. (1987). MPTP An industrial chemical and contaminant of illicit narcotics stimulates a new era in research on Parkinsons disease. Environmental Health Perspectives, 75, 45. Kristjanson, L. J., Aoun, S. (2004). Palliative care for families Remembering the hidden patients. The Canadian Journal of Psychiatry, 49(6), 359-365. Kudlicka, A., Clare, L., Hindle, J. V. (2014). Quality of life, health status and caregiver burden in Parkinsons disease Relationship to executive functioning. International Journal of Geriatric Psychiatry, 29(1), 68-76. Kumar, R., Lozano, A. M., Sime, E., Halket, E., Lang, A. E. (1999). Comparative effects of unilateral and bilateral subthalamic nucleus deep brain stimulation. Neurology, 53(3), 561-561. LaSala, K. B., Nelson, J. (2005). What contributes to professionalism. Medsurg nursing, 14(1), 63. Leentjens, A. F., Van den Akker, M., Metsemakers, J. F., Lousberg, R., Verhey, F. R. (2003). Higher incidence of depression preceding the onset of Parkinsons disease A register study. Movement Disorders, 18(4), 414-418. Lees, A. J., Blackburn, N. A., Campbell, V. L. (1988). The nighttime problems of Parkinsons disease. Clinical Neuropharmacology, 11(6), 512-519. Leiknes, I., Tysnes, O. B., Aarsland, D., Larsen, J. P. (2010). Caregiver distress associated with neuropsychiatric problems in patients with early Parkinsons disease The Norwegian ParkWest study. Acta Neurologica Scandinavica, 122(6), 418-424. Leroi, I., Harbishettar, V., Andrews, M., McDonald, K., Byrne, E. J., Burns, A. (2012). Carer burden in apathy and impulse control disorders in Parkinsons disease. International Journal of Geriatric Psychiatry, 27(2), 160-166. Leroi, I., McDonald, K., Pantula, H., Harbishettar, V. (2012). Cognitive impairment in Parkinson disease Impact on quality of life, disability, and caregiver burden. Journal of Geriatric Psychiatry and Neurology, 25(4), 208-214. Levy, R., Hutchison, W. D., Lozano, A. M., Dostrovsky, J. O. (2000). High-frequency synchronization of neuronal activity in the subthalamic nucleus of parkinsonian patients with limb tremor. The Journal of Neuroscience, 20(20), 7766-7775. Litvan, I., Mohr, E., Williams, J., Gomez, C. Chase. TN (1991). Differential memory and executive functions in demented patients with Parkinsons and Alzheimers disease. Journal of Neurology, Neurosurgery, and Psychiatry, 54, 25-29. Macphee, G. J., Stewart, D. A. (2012). Parkinsons diseasepathology, aetiology and diagnosis. Reviews in Clinical Gerontology, 22(03), 165-178. Mahoney, D. F., Cloutterbuck, J., Neary, S., Zhan, L. (2005). African American, Chinese, and Latino family caregivers impressions of the onset and diagnosis of dementia Cross-cultural similarities and differences. The Gerontologist, 45(6), 783-792. Marder, K., Leung, D., Tang, M., Bell, K., Dooneief, G., Cote, L., … Mayeux, R. (1991). Are demented patients with Parkinsons disease accurately reflected in prevalence surveys A survival analysis. Neurology, 41(8), 1240-1240. Marinus, J., Visser, M., Verwey, N. A., Verhey, F. R. J., Middelkoop, H. A. M., Stiggelbout, A. M., Van Hilten, J. J. (2003). Assessment of cognition in Parkinsons disease. Neurology, 61(9), 1222-1228. Marr, J. A. (1991). The experience of living with Parkinsons disease. Journal of Neuroscience Nursing, 23(5), 325-329. Marsh, L. (2005). Psychosis in Parkinsons disease. Primary Psychiatry,12(7), 56. Martinez-Martin, P., Arroyo, S., Rojo-Abuin, J. M., Rodriguez-Blazquez, C., Frades, B., de Pedro Cuesta, J. (2008). Burden, perceived health status, and mood among caregivers of Parkinsons disease patients. Movement Disorders, 23(12), 1673-1680. Martnez-Martn, P., Benito-Len, J., Alonso, F., Cataln, M. J., Pondal, M., Zamarbide, I., … De Pedro, J. (2005). Quality of life of caregivers in Parkinsons disease. Quality of Life Research, 14(2), 463-472. Martnez-Martn, P., Forjaz, M. J., Frades-Payo, B., Rusiol, A. B., Fernndez-Garca, J. M., Benito-Len, J., … Cataln, M. J. (2007). Caregiver burden in Parkinsons disease. Movement Disorders, 22(7), 924-931. McCallion, P., Janicki, M., Grant-Griffin, L. (1997). Exploring the impact of culture and acculturation on older families caregiving for persons with developmental disabilities. Family Relations, 347-357. McCabe, M. P., Roberts, C., Firth, L. (2008). Work and recreational changes among people with neurological illness and their caregivers. Disability and Rehabilitation, 30(8), 600-610. McCann, J. J., Hebert, L. E., Bienias, J. L., Morris, M. C., Evans, D. A. (2004). Predictors of beginning and ending caregiving during a 3-year period in a biracial community population. American Journal of Public Health, 94,1800-1806. McCutchan, F. E., Artenstein, A. W., Sanders-Buell, E., Salminen, M. O., Carr, J. K., Mascola, J. R., … Kieny, M. P. (1996). Diversity of the envelope glycoprotein among human immunodeficiency virus type 1 isolates of clade E from Asia and Africa. Journal of Virology, 70(6), 3331-3338. McKeith, I. G. (2002). Dementia with Lewy bodies. The British Journal of Psychiatry, 180(2), 144-147. McKeith, I., Mintzer, J., Aarsland, D., Burn, D., Chiu, H., Cohen-Mansfield, J., … Gauthier, S. (2004). Dementia with Lewy bodies. The Lancet Neurology, 3(1), 19-28. McLaughlin, D., Hasson, F., Kernohan, W. G., Waldron, M., McLaughlin, M., Cochrane, B., Chambers, H. (2011). Living and coping with Parkinsons disease Perceptions of informal carers. Palliative Medicine, 25(2), 177-182. McRae, C., Sherry, P., Roper, K. (1999). Stress and family functioning among caregivers of persons with Parkinsons disease. Parkinsonism Related Disorders, 5(1), 69-75. Meireles, J., Massano, J. (2012). Cognitive impairment and dementia in Parkinsons disease Clinical features, diagnosis, and management. Cognitive Impairment and DementiaAn Update, 43. Michell, A. W., Lewis, S. J. G., Foltynie, T., Barker, R. A. (2004). Biomarkers and Parkinsons disease. Brain, 127(8), 1693-1705. Miller, E., Berrios, G. E., Politynska, B. E. (1996). Caring for someone with Parkinsons disease Factors that contribute to distress. International Journal of Geriatric Psychiatry, 11(3), 263-268. Morley, D., Dummett, S., Peters, M., Kelly, L., Hewitson, P., Dawson, J., … Jenkinson, C. (2012). Factors influencing quality of life in caregivers of people with Parkinsons disease and implications for clinical guidelines. Parkinsons Disease, 2012. Mott, S., Kenrick, M., Dixon, M., Bird, G. (2005). Living with Parkinsons disease The carers perspective. International Journal of Therapy Rehabilitation, 12(4), 159- 164. Mui, A. C. (2002). The program of all-inclusive care for the elderly (PACE) an innovative long-term care model in the united states. Journal of Aging Social Policy, 13(2-3), 53-67. Murphy, S., Tickle-Degnen, L. (2001). The effectiveness of occupational therapyrelated treatments for persons with Parkinsons disease A meta-analytic review. American Journal of Occupational Therapy, 55(4), 385-392. Nakamura, T., Dhawan, V., Chaly, T., Fukuda, M., Ma, Y., Breeze, R., … Eidelberg, D. (2001). Blinded positron emission tomography study of dopamine cell implantation for Parkinsons disease. Annals of Neurology, 50(2), 181-187. Nancarrow, S. A., Booth, A., Ariss, S., Smith, T., Enderby, P., Roots, A. (2013). Ten principles of good interdisciplinary team work.Human resources for Health,11(1), 19. National Center for Health Statistics. (1999). Health, United States, 1999 with health and aging chartbook (DHSS Publication No. PHS 99-1232).Hyattsville, MD National Center for Health Statistics. National Family Caregiver Support Program (NFCSP). (2016). Administration on Aging (AoA). Retrieved from HYPERLINK https//aoa.acl.gov/aoa_programs/hcltc/Caregiver/index.aspx https//aoa.acl.gov/L_programs/hcltc/Caregiver/index.aspx National Parkinson Foundation, (2016). The four main motor symptoms of parksinsons disease. Retrieved from HYPERLINK http//www.parkinson.org/understanding-parkinsons/motor- symptoms http//www.parkinson.org/understanding-parkinsons/motor- symptoms Navaie-Waliser, M., Feldman, P. H., Gould, D. A., Levine, C., Kuerbis, A. N., Denelan, K (2002). When the caregiver needs care The plight of vulnerable caregivers. American Journal of Public Health, 92,409-413 Nolan, M., Grant, G., Keady, J. (1996). Understanding family care A multidimensional model of caring and coping. Open University. Nutt, J. G., Wooten, G. F. (2005). Diagnosis and initial management of Parkinsons disease. New England Journal of Medicine, 353(10), 1021-1027. Nyholm, D. (2012). Duodopa treatment for advanced Parkinsons disease A review of efficacy and safety. Parkinsonism Related Disorders, 18(8), 916-929. Oguh, O., Kwasny, M., Carter, J., Stell, B., Simuni, T. (2013). Caregiver strain in Parkinsons disease National Parkinson Foundation quality initiative study. Parkinsonism Related Disorders, 19(11), 975-979. Oishi, S., Diener, E. F., Lucas, R. E., Suh, E. M. (1999). Cross-cultural variations in predictors of life satisfaction Perspectives from needs and values. Personality and Social Psychology Bulletin, 25(8), 980-990. Ojagbemi, A. (2013). Relationship between cognitive Dysfunction and behavioural symptoms in nigerian patients with parkinsons disease no dementia.Journal of Parkinsons Disease,3(3), 293-300. Ondo, W., Jankovic, J., Schwartz, K., Almaguer, M., Simpson, R. K. (1998). Unilateral thalamic deep brain stimulation for refractory essential tremor and Parkinsons disease tremor. Neurology, 51(4), 1063-1069. OReilly, F., Finnan, F., Allwright, S., Smith, G. D., Ben-Shlomo, Y. (1996). The effects of caring for a spouse with Parkinsons disease on social, psychological and physical well -being. Br J Gen Pract, 46(410), 507-512. Ortman, J. M., Velkoff, V. A., Hogan, H. (2014). An aging nation The older population in the United States. Washington, DC US Census Bureau, 25-1140. Padovani, A., Costanzi, C., Gilberti, N., Borroni, B. (2006). Parkinsons disease and dementia.Neurological Sciences,27(1), s40-s43. Parkinsons Disease Foundation (2016). What is parkinsons disease Retrieved from HYPERLINK http//www.pdf.org/en/about_pd http//www.pdf.org/en/about_pd Parkinsons.org (2017). 10 early signs of Parkinsons disease. Retrieved from http//parkinson.org/understanding-parkinsons/10-early-warning-signs Parkinson Study Group. (2004). Levodopa and the progression of Parkinsons disease. N Engl J Med, 2004(351), 2498-2508. Parkinsons Victoria Ltd. (2016). Anxiety, depression, and emotional changes. Retrieved from http//www.parkinsonsvic.org.au/parkinsons-and-you/anxiety-depression-and- emotional-changes/ Pasetti, C., Rossi Ferrario, S., Fornara, R., Picco, D., Foglia, C., Galli, J. (2003). Caregiving and Parkinsons disease. Neurological Sciences, 24(3), 203-204. Patterson, T. L., Semple, S. J., Shaw, W. S., Yu, E., He, Y., Zhang, M. Y., … Grant, I. (1998). The cultural context of caregiving A comparison of Alzheimers caregivers in Shanghai, China and San Diego, California. Psychological Medicine, 28(05), 1071- 1084. Pillon, B., Dubois, B., Lhermitte, F., Agid, Y. (1986). Heterogeneity of cognitive impairment in progressive supranuclear palsy, Parkinsons disease, and Alzheimers disease. Neurology, 36(9), 1179-1179. Pinquart, M., Srensen, S. (2007). Correlates of physical health of informal caregivers A meta-analysis. The Journals of Gerontology Series B Psychological Sciences and Social Sciences, 62(2), P126-P137. Pluck, G. C., Brown, R. G. (2002). Apathy in Parkinsons disease. Journal of Neurology, Neurosurgery Psychiatry, 73(6), 636-642. Pole, N., Gone, J. P., Kulkarni, M. (2008). Posttraumatic stress disorder among ethnoracial minorities in the United States. Clinical Psychology Science and Practice, 15(1), 35- 61. Politis, M., Wu, K., Molloy, S., G Bain, P., Chaudhuri, K., Piccini, P. (2010). Parkinsons disease symptoms The patients perspective. Movement Disorders, 25(11), 1646- 1651. Prince, M. (2004). Care arrangements for people with dementia in developing countries. International Journal of Geriatric Psychiatry, 19(2), 170-177. Qualls, S. H., Segal, D. L., Norman, S., Niederehe, G., Gallagher-Thompson, D. (2002). Psychologists in practice with older adults Current patterns, sources of training, and need for continuing education.Professional Psychology Research and Practice,33(5), 435. Rao, S. S., Hofmann, L. A., Shakil, A. (2006). Parkinsons disease Diagnosis and treatment. Am Fam Physician, 74(12), 2046-54. Ravina, B., Putt, M., Siderowf, A., Farrar, J. T., Gillespie, M., Crawley, A., … Simuni, T. (2005). Donepezil for dementia in Parkinsons disease A randomized, double blind, placebo controlled, crossover study. Journal of Neurology, Neurosurgery Psychiatry, 76(7), 934-939. Reed, C., Belger, M., DellAgnello, G., Wimo, A., Argimon, J. M., Bruno, G., … Vellas, B. (2014). Caregiver burden in Alzheimers disease Differential associations in adult- child and spousal caregivers in the GERAS observational study. Dementia and Geriatric Cognitive Disorders Extra, 4(1), 51-64. Riederer, P. (1976). Time course of nigrostriatal degeneration in Parkinsons disease. Journal of Neural Transmission, 38(3-4), 277-301. Riemsma, R. P., Taal, E., Rasker, J. J., Klein, G., Bruyn, G. A., Wouters, J. M., et al. (1999). The burden of care for informal caregivers of patients with rheumatoid arthritis. Psychology and Health, 14,773-794. Rinne, J. O., Portin, R., Ruottinen, H., Nurmi, E., Bergman, J., Haaparanta, M., Solin, O. (2000). Cognitive impairment and the brain dopaminergic system in Parkinson disease 18F Fluorodopa positron emission tomographic study. Archives of neurology, 57(4), 470-475. Rizzo, A. A., Buckwalter, J. G. (1997). Virtual Reality and Cognitive Assessment. Virtual Reality in Neuro-Psycho-Physiology Cognitive, Clinical and Methodological Issues in Assessment and Rehabilitation, 44, 123. Rodriguez-Oroz, M. C., Obeso, J. A., Lang, A. E., Houeto, J. L., Pollak, P., Rehncrona, S., … Quinn, N. P. (2005). Bilateral deep brain stimulation in Parkinsons disease A multicentre study with 4 years follow-up. Brain, 128(10), 2240-2249. Rozensky, R. H. (2011). The institution of the institutional practice of psychology Health care reform and psychologys future workforce. American Psychologist, 66(8), 797. Saint-Cyr, J. A., Taylor, A. E., Lang, A. E. (1993). Neuropsychological and psychiatric side effects in the treatment of Parkinsons disease. Neurology. Salkind, N. J. (Ed.). (2010).Encyclopedia of research design(Vol. 1). Sage. Sanders, S. (2005). Is the glass half empty or half full Reflections on strain and gain in caregivers of individuals with Alzheimers disease. Social work in Health Care, 40(3), 57-73. Sanders-Dewey, N. E., Mullins, L. L., Chaney, J. M. (2001). Coping style, perceived uncertainty in illness, and distress in individuals with Parkinsons disease and their caregivers. Rehabilitation Psychology, 46(4), 363. Sanyal, J., Das, S., Ghosh, E., Banerjee, T. K., Bhaskar, L. V. K. S., Rao, V. R. (2015). Burden among Parkinsons disease care givers for a community-based study from India. Journal of the Neurological Sciences, 358(1), 276-281. Savage, S., Bailey, S. (2004). The impact of caring on caregivers mental health A review of the literature. Australian health review, 27(1), 111. Scharlach, A. E., Kellam, R., Ong, N., Baskin, A., Goldstein, C., Fox, P. J. (2006). Cultural attitudes and caregiver service use Lessons from focus groups with racially and ethnically diverse family caregivers. Journal of Gerontological Social Work, 47(1-2), 133-156. Schenck, C. H., Bundlie, S. R., Patterson, A. L., Mahowald, M. W. (1987). Rapid eye movement sleep behavior disorder A treatable parasomnia affecting older adults. Jama, 257(13), 1786-1789. Schrag, A., Dodel, R., Spottke, A., Bornschein, B., Siebert, U., Quinn, N. P. (2007). Rate of clinical progression in Parkinsons disease. A prospective study. Movement Disorders, 22(7), 938-945. Schumacher, K., Beck, C. A., Marren, J. M. (2006). Family caregivers Caring for older adults, working with their families. AJN The American Journal of Nursing, 106(8), 40-49. Schulz, R., OBrien, A. T., Bookwala, J., Fleissner, K. (1995). Psychiatric and physical morbidity effects of dementia caregiving Prevalence, correlates, and causes. The Gerontologist, 35,771-791. Schulz, R., Sherwood, P. R. (2008). Physical and mental health effects of family caregiving. The American Journal of Nursing, 108(9 Suppl), 23. Setter, S. M. (2008). Assessing the impact of ease of administration and tolerability on treatment choices in Parkinsons disease. Neurologic clinics, 26(3), 45-63. Shaw, W. S., Patterson, T. L., Semple, S. J., Ho, S., Irwin, M. R., Haugler, R. L., et al. (1997). Longitudinal analysis of multiple indicators of health decline among spousal caregivers. Annals of Behavioral Medicine, 19,101-109. Shin, H., Youn, J., Kim, J. S., Lee, J. Y., Cho, J. W. (2012). Caregiver burden in Parkinson disease with dementia compared to Alzheimer disease in South Korea. Journal of Geriatric Psychiatry and Neurology, 25(4), 222-226. Smith, S. (2015). What is caregiving University of Florida, IFAS Extension. Retrieved from HYPERLINK http//edis.ifas.ufl.edu http//edis.ifas.ufl.edu Smith, G. C., Smith, M. F., Toseland, R. W. (1991). Problems identified by family caregivers in counseling. The Gerontologist, 31(1), 15-22. Starr, P. A., Sillay, K. (2008). Complication avoidance and management in deep brain stimulation surgery. In Deep Brain Stimulation in Neurological and Psychiatric Disorders (pp. 135-150). Humana Press. Stephens, S. A., Christianson, J. B. (1986). Informal care of the elderly. Stoessl, A. J. (1999). Etiology of Parkinsons disease. Canadian Journal of Neurological Sciences/Journal Canadien des Sciences Neurologiques, 26(S2), S5-S12. Stone, R., Cafferata, G. L., Sangl, J. (1987). Caregivers of the frail elderly A national profile. The Gerontologist, 27(5), 616-626. Stringer, H. (2017). Lessons for caregiving. Monitor on Psychology, 48(2), 40. Sue, S. (1998). In search of cultural competence in psychotherapy and counseling. American Psychologist, 53(4), 440. Sue, S. (2006). Cultural competency From philosophy to research and practice. Journal of Community Psychology, 34(2), 237-245. Sue, D. W., Ivey, A. E., Pedersen, P. B. (1996). Multicultural counseling theory. Belmont CA Brooks/Cole. Sue, D. W., Torino, G. C. (2005). Racial-cultural competence Awareness, knowledge, and skills. Handbook of racial-cultural psychology and counseling Training and practice, 2, 3-18. Sue, S., Zane, N., Nagayama Hall, G. C., Berger, L. K. (2009). The case for cultural competency in psychotherapeutic interventions. Annual review of psychology, 60, 525-548. Tabet, N. (2006). Acetylcholinesterase inhibitors for Alzheimers disease Anti- inflammatories in acetylcholine clothing Age and Ageing, 35(4), 336-338. Tan, A. H., Tan, C. T., Marras, C., Loh, K. W., Ho, W., Wai, N., … Kong, S. T. (2015). Knowledge of Parkinsons Disease in a Multiethnic Urban Asian Setting. Journal of Parkinsons Disease, 5(4), 865-879. Tan, S. B., Williams, A. F., Morris, M. E. (2012). Experiences of caregivers of people with Parkinsons disease in Singapore A qualitative analysis. Journal of Clinical Nursing, 21(15-16), 2235-2246. Thanvi, B. R., Lo, T. C. N., Harsh, D. P. (2005). Psychosis in Parkinsons disease. Postgraduate Medical Journal, 81(960), 644-646. Thommessen, B., Aarsland, D., Braekhus, A., Oksengaard, A. R., Engedal, K., Laake, K. (2002). The psychosocial burden on spouses of the elderly with stroke, dementia and Parkinsons disease. International Journal of Geriatric Psychiatry, 17(1), 78-84. Tokuchi, R., Hishikawa, N., Sato, K., Hatanaka, N., Fukui, Y., Takemoto, M., … Abe, K. (2016). Differences between the behavioral and psychological symptoms of Alzheimers disease and Parkinsons disease. Journal of the Neurological Sciences, 369, 278-282. Tolosa, E., Compta, Y., Gaig, C. (2007). The premotor phase of Parkinsons disease. Parkinsonism related disorders, 13, S2-S7. Toseland, R. W., McCallion, P., Gerber, T., Banks, S. (2002). Predictors of health and human services use by persons with dementia and their family caregivers. Social Science Medicine, 55(7), 1255-1266. Tousi, B., Frankel, M. (2004). Olfactory and visual hallucinations in Parkinsons disease. Parkinsonism related disorders, 10(4), 253-254. Townsend, A., Noelker, L., Deimling, G., Bass, D. (1989). Longitudinal impact of interhousehold caregiving on adult childrens mental health. Psychology and aging, 4(4), 393. US Census Bureau. (2007). Statistical abstract of the United States. US Government Printing Office. US Department of Health and Human Services. (2008). Administration on Aging. A Statistical Profile of Older Americans 65. US Department of Health and Human Services. (2008). Office of Minority Health. (2001). Eliminating racial and ethnic disparities in health. Venkateshappa, C., Harish, G., Mythri, R. B., Mahadevan, A., Bharath, M. S., Shankar, S. K. (2012). Increased oxidative damage and decreased antioxidant function in aging human substantia nigra compared to striatum Implications for Parkinsons disease. Neurochemical research, 37(2), 358-369. Walker, A. J., Pratt, C. C., Eddy, L. (1995). Informal caregiving to aging family members A critical review. Family Relations, 402-411. Wallhagen, M. I., Yamamoto-Mitani, N. (2006). The meaning of family caregiving in Japan and the United States A qualitative comparative study. Journal of Transcultural Nursing, 17(1), 65-73. Walsh, K., Bennett, G. (2001). Parkinsons disease and anxiety. Postgraduate Medical Journal, 77(904), 89-93. Warner, T. T., Schapira, A. H. (2003). Genetic and environmental factors in the cause of Parkinsons disease. Annals of neurology, 53(S3), S16-S25. Watts, R. L., Wiegner, A. W., Young, R. R. (1986). Elastic properties of muscles measured at the elbow in man II. Patients with parkinsonian rigidity. Journal of Neurology, Neurosurgery Psychiatry, 49(10), 1177-1181. Webster, J., Watson, R. T. (2002). Analyzing the past to prepare for the future Writing a literature review. MIS quarterly, xiii-xxiii. Weintraub, D., Comella, C. L., Horn, S. (2008). Parkinsons disease–Part 1 Pathophysiology, symptoms, burden, diagnosis, and assessment. Am J Manag Care, 14(2 Suppl), S40-S48. Weintraub, D., Koester, J., Potenza, M. N., Siderowf, A. D., Stacy, M., Voon, V., … Lang, A. E. (2010). Impulse control disorders in Parkinson disease A cross- sectional study of 3090 patients. Archives of Neurology, 67(5), 589-595. Williams-Gray, C. H., Foltynie, T., Brayne, C. E. G., Robbins, T. W., Barker, R. A. (2007). Evolution of cognitive dysfunction in an incident Parkinsons disease cohort. Brain, 130(7), 1787-1798. Willis, B. (2014). The advantages and limitations of single case study analysis. Retrieved from HYPERLINK http//www.e-ir.info/2014/07/05/the-advantages-and-limitations-of-single- case-study- http//www.e-ir.info/2014/07/05/the-advantages-and-limitations-of-single- case-study-analysis/ Wooten, G. F., Currie, L. J., Bovbjerg, V. E., Lee, J. K., Patrie, J. (2004). Are men at greater risk for Parkinsons disease than women. Journal of Neurology, Neurosurgery Psychiatry, 75(4), 637-639. Wressle, E., Engstrand, C., Granrus, A. K. (2007). Living with Parkinsons disease Elderly patients and relatives perspective on daily living. Australian Occupational Therapy Journal, 54(2), 131-139. Yu, E., Liu, W. T., Wang, Z. Y., Levy, P. S., Katzman, R., Qu, G. Y. (1993). Caregivers of the cognitively impaired and the disabled in Shanghai, China.Caregiving systems Formal and informal helpers, 5-30. Zarit, S. (2014). As americans age, caregiving challenges increase. American Psychological Association. Retrieved from HYPERLINK http//www.apa.org/news/press/releases/2014 /06/caregiving- http//www.apa.org/news/press/releases/2014 /06/caregiving-challenges.aspx Zhong, M., Peppard, R., Velakoulis, D., Evans, A. H. (2016). The relationship between specific cognitive defects and burden of care in Parkinsons disease. International Psychogeriatrics, 28(02), 275-281 Appendix A Table of Studies Table A1 Studies reviewed for Research Question 1 What factors contribute to informal CB with PD across various countries reviewed a. What shared factors appear to contribute to informal CB with PD across various countries reviewed b. What unique factors appear to contribute to informal CB with PD across various countries reviewed StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestOguh et al., 2013 United States n 4,132 PD patients n 2,476 PD caregivers 66 Male caregivers Mean age of PD patients 68.4 yrs. Mean duration of the disease 7.9 yrs. 91 Spouse/partners caregivers 9.4 other relatives 0.5 other nonpaid caregivers Examined variables of PD disability associated with CB and the relationship between CB and patient QoL. Recruitment of participants from the National Parkinson Foundations Quality Improvement Registry (NPF-QII) located at the University of Floridas McKnight Brain Institute, Department of Neurology. Caregiver strain measured using the Multidimensional Caregiver Strain Inventory (MCSI) Each item is scored 0 (never) to 4 (a great deal) with a total score range of 0-72. Mild (less than 20) Moderate (20-29) Severe strain (30 and higher) Disease duration, stages of PD, family history, cognitive impairment, and pharmacological data measured by the National Parkinson Foundation Quality Improvement Initiative (NPF-QII) Observational study visits are scheduled on a yearly basis. At each visit, exercise is measured by the self-reported number of hours per week of exercise. Motor impairment measured using the timed up and go test (TUG) Range 0-100 with higher scores indicating higher level of health related QoL impairment. StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestZhong, Peppard, Velakoulis, Evans, 2016 Australia n 50 patient-caregiver pairs Mean age of caregivers 64.7 yrs. Mean age of PD patients 70.2 yrs. Mean duration of the disease 7.6 yrs. Examined the factors associated with CB in an Australian population of PD caregivers. Participants recruited from three movement disorders clinics in Melbourne, Australia. Caregiver burden measured using the Parkinsons Disease Caregiver Burden questionnaire (PDCB) Novel PD-specific instrument designed to address inadequacies of CB tools. Higher scores indicate higher burden. Motor symptom severity measure using the Unified Parkinsons Disease Rating Scale (UPDRS) Part III clinician-scored monitored motor evaluation. Part V Hoehn and Yahr staging of severity of Parkinsons Disease Stage 1 Unilateral involvement only, usually with minimal or no functional impairment. Stage 2 Bilateral or midline involvement, without impairment of balance. Stage 3 First signs of impaired righting reflexes. This is evident as the patient turns or is demonstrated when he or she is pushed from standing equilibrium with the feet together and eyes closed. Stage 4 Fully developed, severely disabling disease, the patient is still able to walk and stand unassisted but is markedly incapacitated. Stage 5 Confinement to bed or wheelchair unless aided. Patient cognition measured using the Neuropsychiatry Unit Cognitive Assessment Tool (NUCOG) Five subscales including attention, memory, executive, visuospatial, and language. Total scored out of 100 with a cut-off score of 80 that suggest impairment. Impulsive and compulsive behaviors measure using the Questionnaire for Impulsive-Compulsive Disorders (ICD) in PD 4 primary questions applied to the 4 ICDs (compulsive gambling, buying, eating, and sexual behavior) and 3 related disorders (medication use, punding, and hobbyism). 5-point Likert scale (score 04 for each question). Scores for each ICD and related disorder range from 0 to 16, with a higher score indicating greater severity of symptoms. n 43 patient-caregiver pairs of Dementia N 63 Controls Median ages 78.5 and 85 yrs. Mean duration of the disease 8.0 yrs. n 16 female caregivers of PD n 4 male caregivers of PDCompared the burden associated with being a caregiver for PD and dementia (physical symptoms cognitive symptoms). Participants recruited from a neurological disorder study and dementia prevalence study in Hai, Tanzania. Caregiver strain measured using the Zarit Burden Interview (ZBI) Higher score reflects more strain, 0 to 88, with higher scores indicating higher burden. Low (0-8) Moderate (9-17) High (18-32) Severe (33 and over) PD diagnosis measured using United Kingdome Parkinsons Disease (UK PD Society Brain Bank Criteria) Dementia diagnosis measured using the Diagnostic Statistical Manual of Mental Disorders Fourth Edition (DSM IV criteria) Disease severity measured using the Hoehn and Yahr scale (H Y) Stage 1 Unilateral involvement only, usually with minimal or no functional impairment. Stage 2 Bilateral or midline involvement, without impairment of balance. Stage 3 First signs of impaired righting reflexes. This is evident as the patient turns or is demonstrated when he or she is pushed from standing equilibrium with the feet together and eyes closed. Stage 4 Fully developed, severely disabling disease, the patient is still able to walk and stand unassisted but is markedly incapacitated. Stage 5 Confinement to bed or wheelchair unless aided. Dementia measured using the Clinical Dementia Rating scale for Dementia (CDR) Domains are memory, orientation, judgment and problem solving, community affairs, home and hobbies, and personal care. Severity ratings range along a 5-point scale CDR-0 no cognitive impairment CDR-0.5 questionable or very mild dementia CDR-1 mild CDR-2 moderate CDR-3 severe StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestOjagbemi, 2013 Nigerian 50 patient-caregiver pairs Mean age of caregivers of PD 40.5 yrs. 54.0 Male caregivers Over 90 Family member caregivers 8.7 Non-family member caregivers Mean age of PD patients 64.3 yrs. Examined CB with PD and the impact of behavioral symptoms. Assessed caregivers strain based on the relationship between cognitive dysfunction and behavioral symptoms. Participants recruited to participate in an interview from neurology clinics of two general hospitals in Ibadan and Abeokuta, Southwestern Nigeria. Behavioral symptoms and caregiver distress measured using the Neuropsychiatric Inventory (NPI) Severity was scored 1 mild, 2 moderate, 3 marked The total NPI-Q severity score represents the sum of individual symptom scores and ranges from 0 to 36. The total NPI-Q distress score represents the sum of individual symptom scores and ranges from 0 to 60. Diagnosis of PD measured using the United Kingdom Parkinsons Disease Society (UKPDS) the Diagnostic Manual for Mental Health Disorders-fourth edition (DSM-IV) Cognitive function measured using the Mini- Mental Status Exam (MMSE) A score of 23 or less generally has been accepted as indicating the presence of cognitive impairment. 24-30 no cognitive impairment 18-23 mild cognitive impairment, 0-17 severe cognitive impairment. Motor symptoms measured using the Unified Parkinsons Disease Rating Scale (UPDRS) Six sections Part I evaluation of mentation, behavior, and mood Part II self-evaluation of the activities of daily life (ADLs) including speech, swallowing, handwriting, dressing, hygiene, falling, salivating, turning in bed, walking, and cutting food Part III clinician-scored monitored motor evaluation Part IV complications of therapy Part V Hoehn and Yahr staging of severity of Parkinsons disease Stage 1 Unilateral involvement only, usually with minimal or no functional impairment. Stage 2 Bilateral or midline involvement, without impairment of balance. Stage 3 First signs of impaired righting reflexes. This is evident as the patient turns or is demonstrated when he or she is pushed from standing equilibrium with the feet together and eyes closed. Stage 4 Fully developed, severely disabling disease, the patient is still able to walk and stand unassisted but is markedly incapacitated. Stage 5 Confinement to bed or wheelchair unless aided. Part VI Schwab and England ADL scale StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestCarod-Artal et al., 2013 Brazil n 50 patient-caregiver pairs Mean age of caregivers 55.7 yrs. Mean age of PD patients 65.3 yrs. Mean duration of the disease 8.7 yrs. Mean duration of informal caregiving 5.8 yrs. 12 Male caregivers 88 Female caregivers 78 spouse caregivers 14 daughter/son caregivers 8 other family member/friend Examined main determinants of CB and health-related quality of life in caregivers of Brazilian PD patients. Primary caregivers were recruited at the outpatient Neurology Clinic of the Sarah Hospital in Brazil. Burden of caregivers measured using the Zarit Caregiver Burden Interview (ZCBI). Higher scores indicate higher burden. The ZCBI total score 0 to 88 Personal Strain score 0 to 48 Role Strain score 0 to 24 PD severity measured using the Clinical Impression of Severity Index for Parkinsons disease (CISI-PD). Domains motor signs, disability, motor complications, and cognitive impairment. The global score, 0 (normal) to 24 (severe). Disease severity measured using the Hoehn and Yahr (H Y) Stage 1 Unilateral involvement only, usually with minimal or no functional impairment. Stage 2 Bilateral or midline involvement, without impairment of balance. Stage 3 First signs of impaired righting reflexes. This is evident as the patient turns or is demonstrated when he or she is pushed from standing equilibrium with the feet together and eyes closed. Stage 4 Fully developed, severely disabling disease, the patient is still able to walk and stand unassisted but is markedly incapacitated. Stage 5 Confinement to bed or wheelchair unless aided. Motor impairment, ADLs, motor complications measured using the Scales for Outcomes in Parkinsons disease (SCOPA-Motor). 21 items grouped in motor impairment, activities of daily living (ADL), and motor complications. High scores indicate higher severity. Scoring range from 0 (normal) to 3 (severe). Total score ranges from 0 to 75 points. Memory, attention, executive functions, and visuospatial functions measured using the Scales for Outcomes in Parkinsons disease (SCOPA-Cognition). Higher scores reflect a better cognitive performance. The scale consists of 10 items with a maximum score of 43. Non-motor symptoms measured using the Non-Motor Symptoms Scale (NMSS). Sleep/fatigue, Mood/apathy, Perceptual problems/hallucinations, Attention/memory, Gastrointestinal tract, Urinary function, Sexual function, and Miscellaneous. Maximum total score is 360 points. Score for each specific item is based on a multiple of severity (0 to 3) and frequency scores (from 1 to 4). Sleep problems measured using the Scales for Outcomes in Parkinsons disease (SCOPA-Sleep). Nighttime sleep subscale 5 items, scored from 0 (not at all) to 3 (a lot), and global score range from 0 to 15. Daytime sleepiness subscale is composed of 6 items with response options ranging 0 (never) to 3 (often), with a range score between 0 and 18. Psychosocial functioning measured using the Scales for Outcomes in Parkinsons disease (SCOPA-Psychosocial). Evaluates psychosocial functioning during the past month. The summary index is calculated as a percentage on the maximum possible score (33-points). 11 items scoring on a scale from 0 (not at all) to 3 (very much). Change in health status in the preceding 12 months (one question), Visual analog scale (EQ-VAS) evaluating current health status (0, worse imaginable to 100, best imaginable). StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestDAmelio et al., 2009 Italy n 40 patient-caregiver pairs Mean age of caregivers 63.6 yrs. Mean age of PD patients 66.3 yrs. Mean duration of the disease 5.6 yrs.Examined the predictors of CB among spouse caregivers of PD. Participants were recruited from an outpatient clinic at the University of Palermos Neurological Department. Caregiver burden measured using the Caregiver Burden Inventory (CBI). Multidimensional scale evaluating subjective and objective aspects of a caregivers life. Higher scores indicating a greater caregiver-burden. Scores near or above 36 indicates greater need for services Depressive symptoms measured using the Geriatric Depression Scale (GDS). 30 items self-report with each question scored as either 0 or 1. Normal 0-9 Mild depressives 10-19 Severe depressives 20-30 Disease severity and symptoms measured using the Unified Parkinsons Disease Rating Scale (UPDRS). Six sections Part I evaluation of mentation, behavior, and mood Part II self-evaluation of the activities of daily life (ADLs) including speech, swallowing, handwriting, dressing, hygiene, falling, salivating, turning in bed, walking, and cutting food Part III clinician-scored monitored motor evaluation Part IV complications of therapy Part V Hoehn and Yahr staging of severity of Parkinsons disease Part VI Schwab and England ADL scale Behavioral symptoms and caregiver distress measured using the Neuropsychiatric Inventory (NPI). Severity was scored 1 mild, 2 moderate, 3 marked The total NPI-Q severity score represents the sum of individual symptom scores and ranges from 0 to 36. The total NPI-Q distress score represents the sum of individual symptom scores and ranges from 0 to 60. Diagnosis and stage of PD measured using the Hoehn and Yahr scale (H Y). Stage 1 Unilateral involvement only, usually with minimal or no functional impairment. Stage 2 Bilateral or midline involvement, without impairment of balance. Stage 3 First signs of impaired righting reflexes. This is evident as the patient turns or is demonstrated when he or she is pushed from standing equilibrium with the feet together and eyes closed. Stage 4 Fully developed, severely disabling disease, the patient is still able to walk and stand unassisted but is markedly incapacitated. Stage 5 Confinement to bed or wheelchair unless aided. StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestShin et al., 2012 South Korean 42 caregivers of PDD n 42 PDD patients n 109 AD patients n 109 caregivers of AD Mean age of caregivers of PDD 60.0 yrs. Mean age of PDD patients 75.2 yrs. Mean age of caregivers of AD 55.3 yrs. Mean age of AD patients 79.9 yrs. 16 Male PD caregivers 26 Female PD caregivers Compared caregiver burden in PD with dementia (PDD) to Alzheimer Disease (AD). Examined factors contributing to CB in PDD. Participants recruited from the neurology and psychiatry outpatient clinics of Samsung Medical Center and Boramae Medical Center. Caregiver burden measured using the Burden Interview (BI). Higher scores indicate greater caregiver distress. 22-item scale, with each item scored from 0 to 4. Performance in ADLs measured using the Barthel Activities of Daily Living (BADLs). Scores may lie in the range 0 60 with higher scores identifying clients who need more assistance. Dementia severity measured using the Clinical Dementia Rating (CDR). The CDR score is obtained by summing each of the domain box scores, with scores ranging from 0 to 18. Higher scores indicate higher level of severity of dementia. Disease status measured using the Unified Parkinsons Disease Rating Scale (UPDRS). 4 subparts Part 1 consists of four questions that evaluate memory, insight and hallucination, depression, and volition. Part 2 assesses the ADLs of patients. Part 3 is a scale representing motor severity. Part 4 consists of items related to complications of therapy. Diagnosis and stage of PD measured using the Hoehn and Yahr (H Y). Stage 1 Unilateral involvement only, usually with minimal or no functional impairment. Stage 2 Bilateral or midline involvement, without impairment of balance. Stage 3 First signs of impaired righting reflexes. This is evident as the patient turns or is demonstrated when he or she is pushed from standing equilibrium with the feet together and eyes closed. Stage 4 Fully developed, severely disabling disease, the patient is still able to walk and stand unassisted but is markedly incapacitated. Stage 5 Confinement to bed or wheelchair unless aided. Depression measured using the Center for Epidemiologic Studies Depression Scale (CES-D). Higher scores represent more depressive states. Self-reported scale consisting of 20 questions. Scores ranging from 0 to 3 Total score ranged from 0 to 60, and a score of 16 or higher indicates the likely presence of clinically significant depression. Health-related quality of life measured using the Euro-quality of life scale (EQ-5D). Lower scores indicating lower health-related Qol. Scores ranging from 0 to 100. StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestKudlicka et al., 2013 United Kingdomn 50 PD caregivers n 65 PD patients Mean age of PD patients 70.1 yrs. Mean duration of the disease 6.0 yrs. 69 spouse caregivers 4.6 parent/child caregivers 3.1 friend caregivers Examined the extent to which executive impairment contributes to QoL, health status, and CB with PD. Participants were recruited from the local movement disorders clinics in North-West Wales. Caregiver burden measured using the Caregiver Burden Inventory (CBI). Higher scores indicate greater burden. 24-item self-rating questionnaire providing a detailed picture of the caregivers feelings and responses to the burden of care. A maximum score of 96 indicates the highest level of burden. Quality of life measured using the Questions on Life Satisfaction scale. Negative values indicate a predominance of dissatisfaction. Five-point scales, the subjective importance of a specific area of life or health (importance rating) and the degree of satisfaction in that area (satisfaction rating). Two sum scores are computed by adding the eight health-related and the eight general satisfaction scores. Higher scores indicate high satisfaction with quality of life. Health status and severity of PD symptoms measured using the Parkinsons disease Questionnaire- 39 (PDQ-39). Higher scores indicate higher levels of problems. Participants indicate how often they have been affected by each of the 39 problems listed. A summary index ranges from 0 to 100. Cognitive function measured using the Addenbrookes Cognitive Examination- Revised Version (ACE-R). Estimates general cognition in five cognitive domains attention and orientation, memory, verbal fluency, language and visuospatial abilities. The maximum total score of 100 indicates errorless performance. Executive functions(measured using the Trail Making Test (TMT) and the Colour Word Interference test (CWI). Longer completion times indicate poorer performance. TMT, participants draw a line connecting numbers (TMT-Numbers) or numbers and letters in alternating sequence (TMT-Switching) in ascending order. Results are reported as the number of seconds required to complete the task therefore, higher scores reveal greater impairment. Trail A 29 seconds 78 seconds Most in 90 seconds. Trail B 75 seconds 273 seconds Most in 3 minutes. CWI inhibition/switching condition, participants switch between naming the dissonant ink colour (Stroop task) and reading the word, which tests the ability to inhibit unwanted reaction and cognitive flexibility. Scores calculated for the total number of errors on each trial, as well as corrected and uncorrected errors on the inhibition and inhibition/switching trials. Executive function-related behavioral problems measured using the Behaviour Rating Inventory of Executive Function-Adult Version (BRIEF-A). Three-point scale participants indicate which of 75 behaviors have been problems during the past month. Higher scores indicate more difficulties. StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestTan, Williams, Morris, 2012Singaporen 21 caregivers of PD Age ranged from 31 yrs. to more than 71 yrs. Conducted an in-depth qualitative examination of the caregivers experience in caring for a patient diagnosed with PD. Participants were recruited from the Singapore General Hospital neurology specialist outpatient clinic (SOC) and Parkinsons Disease Society of Singapore. Participants were interviewed in private setting of each participants choosing for 42-106 minutes.Interviews were conducted in a private setting of the participants choice. Interviews based a semi-structured interview guide (Hoepfl, 1997). Questions derived from the literature review and insights based on the researchers clinical experiences with PD and caregiving. Diagnosis and stage of PD measured using the Hoehn and Yahr (H Y). Stage 1 Unilateral involvement only, usually with minimal or no functional impairment. Stage 2 Bilateral or midline involvement, without impairment of balance. Stage 3 First signs of impaired righting reflexes. This is evident as the patient turns or is demonstrated when he or she is pushed from standing equilibrium with the feet together and eyes closed. Stage 4 Fully developed, severely disabling disease, the patient is still able to walk and stand unassisted but is markedly incapacitated. Stage 5 Confinement to bed or wheelchair unless aided. StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestSanyal et al., 2015 India n 150 patient-caregiver pairs Mean age of caregivers 50.4 yrs. Mean age of PD patients 57.6 yrs. 21 Male caregivers 79 Female caregivers 7.33 Husband caregiver 12 Son caregiver 6 Sibling caregiver 13.33 Daughter caregiver 20.66 Daughter-in-law caregiver 40.67 Wife caregiver Examined predictors of CB among caregivers of PD. Participants recruited from the neurology outpatient Department of Movements Disorders Clinics of National Neurosciences Centre (NNC) and Nil Ratan Sircar Medical College (NRS). Caregiver burden measured using the Burden Assessment Schedule (BAS) 20-item modified from a 40-item questionnaire with domains of burden such as finance, occupation, health, emotional and psychosocial aspects, marital and sexual relations, support, and routine. Maximum score is 100. Higher score indicates higher burden. Item is rate 3-point scale (1 not at all, 2 to some extent, or 3 very much) Caregiver burden measured using Caregivers Burden Scale (CBS). A higher score indicates higher perceived CB. Caregivers indicate how often they have felt the suggested feeling or perception. 5-point sliding scale. Scores summing the responses of the individual items as the total score. Never (0) to nearly always (4). Health related quality of life measured using the Health-Related Quality of Life Questionnaire (SF-36). 36 items congregated into 8 dimensions. Each domain score ranging from 0 (worse health state) to 100 (best health state). Disease status measured using the Unified Parkinsons Disease Rating Scale (UPDRS). Six sections Part I evaluation of mentation, behavior, and mood Part II self-evaluation of the activities of daily life (ADLs) including speech, swallowing, handwriting, dressing, hygiene, falling, salivating, turning in bed, walking, and cutting food Part III clinician-scored monitored motor evaluation Part IV complications of therapy Part V Hoehn and Yahr staging of severity of Parkinsons disease Part VI Schwab and England ADL scale Diagnosis and stage of PD measured using the Hoehn and Yahr scale (H Y) Stage 1 Unilateral involvement only, usually with minimal or no functional impairment. Stage 2 Bilateral or midline involvement, without impairment of balance. Stage 3 First signs of impaired righting reflexes. This is evident as the patient turns or is demonstrated when he or she is pushed from standing equilibrium with the feet together and eyes closed. Stage 4 Fully developed, severely disabling disease, the patient is still able to walk and stand unassisted but is markedly incapacitated. Stage 5 Confinement to bed or wheelchair unless aided. Depression and dementia severity measured using the Montgomery Asberg Depression Rating Score (MADRS) the Mini-Mental Status Exam (MMSE) MADRS Higher MADRS score indicates more severe depression, and each item yields a score of 0 to 6. The overall score ranges from 0 to 60. 0 to 6 normal/symptom absent. 7 to 19 mild depression. 20 to 34 moderate depression. 34 severe depression MMSE A score of 23 or less generally has been accepted as indicating the presence of cognitive impairment. 24-30 no cognitive impairment 18-23 mild cognitive impairment, 0-17 severe cognitive impairment. Spain n 289 patient-caregiver pairs Mean age of PD caregivers 59.4 yrs. Mean age of PD patients 64.9 yrs. 66.8 Female caregivers 75.9 Spouse caregivers 13.6 Child caregivers 8.1 Other relative 2.4 Other (friend/neighbor) Mean duration of the disease 7.6 yrs.Examined the characteristics of PD patients and their informal caregivers. Examined the association between these characteristics and CB, health status, and mood. Patients and caregivers were selected based on the criteria used in the longitudinal ELEP study. Baseline, cross sectional was gathered. Caregiver burden measured using the Zarit Caregiver Burden Inventory (ZCBI). Higher scores indicating higher burden. 22 Items score range from 0 (never) to 4 (near always) rating the impact of disease on the caregivers emotional, physical, and socioeconomic status. Total score from 0 to 88. Health-related quality of life measure using the EuroQol Assesses through three domains Descriptive, five items (mobility, self-care, usual activities, pain and anxiety, and depression), scoring 1 (no problems or symptoms) to 3 (serious problems or symptoms) Change in health status in the preceding 12 months (one question) Visual analog scale (EQ-VAS) evaluating current health status (0, worse imaginable to 100, best imaginable). Motor abilities and ADLs measured using the Scales for Outcomes in Parkinsons Disease Motor Scale (SCOPA-Motor) Higher score indicates higher severity. 21-item scale with three subscales motor examination, ADLs, and motor complications. Item scoring ranges from 0 (normal) to 3 (severe). Total score from 0 to 75. Cognitive status measured using the Scales for Outcomes in Parkinsons Disease Cognitive Scale (SCOPA-COG) Higher the score, the better the cognitive performance. 10-items assessing attention, memory, learning, executive functions, and visuospatial functions. Total score ranges from 0 to 43. Level of severity measured using the Clinical Impression of Severity Index for Parkinsons Disease (CISI-PD) Assess four dimensions motor signs, disability, motor complications, and cognitive status. 0 (normal) to 6 (severe). Total score from 0 to 24. Severity levels 1 to 7 points, moderate 8 to 14, severe 15 points or higher. Comorbidity in the elderly measured using the Cumulative Illness Rating Scale-Geriatrics (CIRS-G) Assesses 14 organic systems on a scale from 0 (no problem) to 4 (extremely severe). The cumulative final score can vary theoretically vary from 0 to 56 (although a very high score is impossible). Sleep quality measured using the Scales for Outcomes in Parkinsons Disease Sleep Scale (SCOPA-Sleep) Two subscales Nocturnal sleep (5 items) and Daytime Sleepiness (6 items). Assesses overall quality of nocturnal sleep 1 (very well) to 7 (Very badly). Maximum number is 15. Anxiety and depression measured using the Hospital Anxiety and Depression Scale (HADS) 23-item evaluates autonomic dysfunction (gastrointestinal, urinary, cardiovascular, thermoregulatory dysfunction, pupillomotor dysfunction, and sexual dysfunction. Total scores range from 0 to 69. Psychosocial impact measured using the Scales for Outcomes in Parkinsons Disease Psychosocial Scale (SCOPA-PS) 11-item assess psychosocial impact of PD. Items score 0 (not at all) to 3 (very much). Maximum possible score 33-points. Table A2 Studies reviewed for Research Question 2 Does informal CB impact the QoL of informal caregivers for individuals with PD across countries reviewed a. Which countries appear to have shared factors of CB with PD impacting QoL b. Which countries appear to have unique factors of CB with PD impacting QoL StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestCarod-Artal et al., 2013 Brazil n 50 patient-caregiver pairs Mean age of caregivers 55.7 yrs. Mean age of PD patients 65.3 yrs. Mean duration of the disease 8.7 yrs. Mean duration of informal caregiving 5.8 yrs. 12 Male caregivers 88 Female caregivers 78 spouse caregivers 14 daughter/son caregivers 8 other family member/friend Examined main determinants of CB and health-related quality of life in caregivers of Brazilian PD patients. Primary caregivers were recruited at the outpatient Neurology Clinic of the Sarah Hospital in Brazil. Burden of caregivers measured using the Zarit Caregiver Burden Interview (ZCBI) Higher scores indicate higher burden. The ZCBI total score 0 to 88 Personal Strain score 0 to 48 Role Strain score 0 to 24 PD severity measured using the Clinical Impression of Severity Index for Parkinsons disease (CISI-PD). Domains motor signs, disability, motor complications, and cognitive impairment. The global score, 0 (normal) to 24 (severe). Disease severity measured using the Hoehn and Yahr (H Y) Stage 1 Unilateral involvement only, usually with minimal or no functional impairment. Stage 2 Bilateral or midline involvement, without impairment of balance. Stage 3 First signs of impaired righting reflexes. This is evident as the patient turns or is demonstrated when he or she is pushed from standing equilibrium with the feet together and eyes closed. Stage 4 Fully developed, severely disabling disease, the patient is still able to walk and stand unassisted but is markedly incapacitated. Stage 5 Confinement to bed or wheelchair unless aided. Motor impairment, ADLs, motor complications measured using the Scales for Outcomes in Parkinsons disease (SCOPA-Motor) 21 items grouped in motor impairment, activities of daily living (ADL), and motor complications. High scores indicate higher severity. Scoring range from 0 (normal) to 3 (severe). Total score ranges from 0 to 75 points. Memory, attention, executive functions, and visuospatial functions measured using the Scales for Outcomes in Parkinsons disease (SCOPA-Cognition) Higher scores reflect a better cognitive performance. The scale consists of 10 items with a maximum score of 43. Non-motor symptoms measured using the Non-Motor Symptoms Scale (NMSS). Sleep/fatigue, Mood/apathy, Perceptual problems/hallucinations, Attention/memory, Gastrointestinal tract, Urinary function, Sexual function, and Miscellaneous. Maximum total score is 360 points. Score for each specific item is based on a multiple of severity (0 to 3) and frequency scores (from 1 to 4). Sleep problems measured using the Scales for Outcomes in Parkinsons disease (SCOPA-Sleep) Nighttime sleep subscale 5 items, scored from 0 (not at all) to 3 (a lot), and global score range from 0 to 15. Daytime sleepiness subscale is composed of 6 items with response options ranging 0 (never) to 3 (often), with a range score between 0 and 18. Psychosocial functioning measured using the Scales for Outcomes in Parkinsons disease (SCOPA-Psychosocial). Evaluates psychosocial functioning during the past month. The summary index is calculated as a percentage on the maximum possible score (33-points). Health status measured using the EuroQol five dimensions questionnaire (EQ-5D) Descriptive, five items (mobility, self-care, usual activities, pain and anxiety, and depression), scoring 1 (no problems or symptoms) to 3 (serious problems or symptoms) Change in health status in the preceding 12 months (one question), Visual analog scale (EQ-VAS) evaluating current health status (0, worse imaginable to 100, best imaginable). StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestKudlicka et al., 2013 United Kingdomn 50 PD caregivers n 65 PD patients Mean age of PD patients 70.1 yrs. Mean duration of the disease 6.0 yrs. 69 spouse caregivers 4.6 parent/child caregivers 3.1 friend caregivers Examined the extent to which executive impairment contributes to QoL, health status, and CB with PD. Participants were recruited from the local movement disorders clinics in North-West Wales. Caregiver burden measured using the Caregiver Burden Inventory (CBI) Higher scores indicate greater burden. 24-item self-rating questionnaire providing a detailed picture of the caregivers feelings and responses to the burden of care. A maximum score of 96 indicates the highest level of burden. Quality of life(measured using the Questions on Life Satisfaction scale. Negative values indicate a predominance of dissatisfaction. Five-point scales, the subjective importance of a specific area of life or health (importance rating) and the degree of satisfaction in that area (satisfaction rating). Two sum scores are computed by adding the eight health-related and the eight general satisfaction scores. Higher scores indicate high satisfaction with quality of life. Health status and severity of PD symptoms measured using the Parkinsons disease Questionnaire- 39 (PDQ-39) Higher scores indicate higher levels of problems. Cognitive function measured using the Addenbrookes Cognitive Examination- Revised Version (ACE-R). Estimates general cognition in five cognitive domains attention and orientation, memory, verbal fluency, language and visuospatial abilities. The maximum total score of 100 indicates errorless performance. Executive functions measured using the Trail Making Test (TMT) and the Colour Word Interference test (CWI). Longer completion times indicate poorer performance. TMT, participants draw a line connecting numbers (TMT-Numbers) or numbers and letters in alternating sequence (TMT-Switching) in ascending order. Results are reported as the number of seconds required to complete the task therefore, higher scores reveal greater impairment. Trail A 29 seconds 78 seconds Most in 90 seconds. Trail B 75 seconds 273 seconds Most in 3 minutes. CWI inhibition/switching condition, participants switch between naming the dissonant ink colour (Stroop task) and reading the word, which tests the ability to inhibit unwanted reaction and cognitive flexibility. Scores calculated for the total number of errors on each trial, as well as corrected and uncorrected errors on the inhibition and inhibition/switching trials. Executive function-related behavioral problems measured using the Behaviour Rating Inventory of Executive Function-Adult Version (BRIEF-A) Three-point scale participants indicate which of 75 behaviors have been problems during the past month. Higher scores indicate more difficulties. StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestMartinez-Martin et al., 2005 Spain n 62 Caregivers n 57 Patient-caregiver pairs Mean age of caregivers 58.84 yrs. Mean age of patients 67.0 yrs. 66.7 Female caregivers 73 Spouse caregivers 22 Sons or daughters Mean duration of the disease 10.5 yrs.Researchers hypothesized that in PD, the following factors are associated with impairment of caregivers quality of life (QoL) Patient-related factors, such as age, sex, duration of disease, disability, motor impairment, emotional disorder and self-perception of poor state of health. Caregiver-related factors, such as age, sex, continuity of care to patient, educational level and perception of patients poor state of health. Neurologists informed patients and caregivers about the study at local clinics and referred to a PD Association. Participates were sent questionnaires and asked to complete the evaluation. Health related quality of life measured using the EuroQoL (EQ-5D) Descriptive, five items (mobility, self-care, usual activities, pain and anxiety, and depression), scoring 1 (no problems or symptoms) to 3 (serious problems or symptoms). Change in health status in the preceding 12 months (one question) Visual analog scale (EQ-VAS) evaluating current health status (0, worse imaginable to 100, best imaginable). Health-related quality of life measured using the Parkinsons Disease Questionnaire (PDQ-8). The lower the index, the better the HRQoL. 8 items, each of which represents one domain of the PDQ-39. Scores for each item run from 0 (no problem) to 4 (continuous problem/ unable to do it). Total score for the 8 items divided by the maximum possible score and is expressed as a percentage. Assesses caregivers professional, social and leisure activities, and strain from responsibilities. Four degrees of caregiver distress can be determined none 141149 points, mild 140100 points, moderate 9986 points, and severe less than 85 points. Mental state, ADLs, motor examination, and complications measured using the Unified Parkinsons Disease Rating Scale (UPDRS) Six sections Part I evaluation of mentation, behavior, and mood Part II self-evaluation of the activities of daily life (ADLs) including speech, swallowing, handwriting, dressing, hygiene, falling, salivating, turning in bed, walking, and cutting food Part III clinician-scored monitored motor evaluation Part IV complications of therapy Part V Hoehn and Yahr staging of severity of Parkinsons disease Part VI Schwab and England ADL scale Diagnosis and stage of PD measured using the Hoehn and Yahr scale (H Y) Stage 1 Unilateral involvement only, usually with minimal or no functional impairment. Stage 2 Bilateral or midline involvement, without impairment of balance. Stage 3 First signs of impaired righting reflexes. This is evident as the patient turns or is demonstrated when he or she is pushed from standing equilibrium with the feet together and eyes closed. Stage 4 Fully developed, severely disabling disease, the patient is still able to walk and stand unassisted but is markedly incapacitated. Stage 5 Confinement to bed or wheelchair unless aided. Severity of cognitive impairment measured using Pfeiffers Short Portable Mental Status Questionnaire (SPMSQ) 10-item to detect and approximate the severity of cognitive impairment (short and long-term memory and orientation). Five errors or more indicative of moderate or severe impairment. StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestDemeulemeester et al., 2015Belgiumn 49 patient-caregiver pairs Mean age of caregivers 63.2 yrs. Mean age of PD patients 65.0 yrs. Mean duration of the disease 7.7 yrs. Investigated the perception of patients and partners of their own as well as of each others present and former quality of life and to explore a possible correlation of these estimates with measures of CB with PD. Patients recruited on an outpatient basis in the University Hospital Ghent at the occasion of one of their regular follow-up consultations. Cognitive burden and dependence measured using the Unified Parkinsons Disease Rating Scale (UPDRS) Part I evaluation of mentation, behavior, and mood Part VI Schwab and England (SE) ADL scale. Subjects perceived health and quality of life measured using the Visual Analogue Scale (VAS) Estimation of own current QoL and to indicate perceived QoL with 0 (meaning having no quality of life at all) and 10 (an optimal quality of life). Current health status (0, worse imaginable to 100, best imaginable). Cognitive function measured using the Mini-Mental Status Examination (MMSE) A score of 23 or less generally has been accepted as indicating the presence of cognitive impairment. 24-30 no cognitive impairment 18-23 mild cognitive impairment, 0-17 severe cognitive impairment. Cognitive function measured using the Montreal Cognitive Assessment (MOCA) MoCA scores range between 0 and 30. A score of 26 or over is considered to be normal. StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestOguh et al., 2013 United States n 4,132 PD patients n 2,476 PD caregivers 66 Male caregivers Mean age of PD patients 68.4 yrs. Mean duration of the disease 7.9 yrs. 91 Spouse/partners caregivers 9.4 other relatives 0.5 other nonpaid caregivers Examined variables of PD disability associated with caregiver strain and the relationship between caregiver strain and patient QoL. Recruitment of participants from the National Parkinson Foundations Quality Improvement Registry (NPF-QII) located at the University of Floridas McKnight Brain Institute, Department of Neurology Caregiver strain measured using the Multidimensional Caregiver Strain Inventory (MCSI) Each item is scored 0 (never) to 4 (a great deal) with a total score range of 0-72. Mild (less than 20) Moderate (20-29) Severe strain (30 and higher) Disease duration, stages of PD, family history, cognitive impairment, and pharmacological data measured by the National Parkinson Foundation Quality Improvement Initiative ((NPF-QII) Observational study visits are scheduled on a yearly basis. At each visit, exercise is measured by the self-reported number of hours per week of exercise. Motor impairment measured using the timed up and go test (TUG) TUG times participants as they rise from a chair, walk 3 meters, turn, and return to sitting in the chair. Higher TUG times indicate slower performance, or worse functional mobility. 39 items combined 8 dimensions (mobility, activities of daily living, emotional well-being, stigma, social support, cognition, communication, and bodily discomfort). Range 0-100 with higher scores indicating higher level of health related QoL impairment. StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestMorley et al., 2012United Kingdom n 238 patient-caregiver pairs Mean age of caregivers 68.2 yrs. Mean age of patients 71.64 yrs. n 177 female caregivers n 60 male caregivers Mean length of caregiving role 8.1 yrs. Examined factors of an assessment influencing QoL of carers. Considered results in the context of current clinical guidelines for the management of PD. Participants were invited to take part in a postal survey through volunteer support officers from PD UK, local branches sent out information to their members, and an advertisement was place on the PD UK Research Opportunity Website. Quality of life for carers measured using the Parkinsons Disease Questionnaire-Carers (PDQ-Carer) Lower scores indicating superior QoL. 29-item instrument answered on a 5-point Likert scale. Contains four domains (Social and Personal Activities, Anxiety and Depression, Self-Care, and Stress). Raw scores for each domain are transformed to have a range of 0 to 100. Quality of life measured using the Parkinsons Disease Quality of Life Questionnaire (PDQ-39). Lower scores indicating superior QoL. 39-item instrument answered on a 5-point Likert scale. Contains eight domains (Mobility, Activities of Daily Living, Emotional Well Being, Stigma, Social Support, Cognitions, Communication, and Bodily Discomfort). Raw scores for each domain are transformed to have a range from 0 to 100. StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestKelly et al., 2012 Australian 97 patient-caregiver pairs Caregivers over 60-years-old 66.0 Caregivers over 80-years-old 7.0 Mean age of PD patients 68.5 yrs. 36 Female caregivers Mean duration of the disease 7.5 yrs. Examined the relationship between HRQol in people with PD and their informal caregivers. Examined the associations between caregiver HRQol and caregiver strain, and HRQol in PD and caregiver strain. Caregiver strain measured using the Modified Caregiver Strain Index Association (MCSI) Scoring is 2 points for each yes, 1 point for each sometimes, and 0 for each no response. Scoring ranges from 26 to 0 a higher score indicates a higher level of caregiver strain. Health related quality of life measured using the EuroQoL (EQ-5D) Five questions covering mobility, personal care, usual activities, pain / discomfort, and anxiety / depression. Each with 3 options and summing to a single score. The overall health state is subsequently defined by a 5-digit number. Lower scores indicating lower health-related Qol. Scores ranging from 0 to 100. Level of PD severity measured using the Hoehn and Yahr (H Y) Stage 1 Unilateral involvement only, usually with minimal or no functional impairment. Stage 2 Bilateral or midline involvement, without impairment of balance. Stage 3 First signs of impaired righting reflexes. This is evident as the patient turns or is demonstrated when he or she is pushed from standing equilibrium with the feet together and eyes closed. Stage 4 Fully developed, severely disabling disease, the patient is still able to walk and stand unassisted but is markedly incapacitated. Stage 5 Confinement to bed or wheelchair unless aided. HRQol and disease specific information measured using the Parkinsons Disease Questionnaire-39 item (PDQ-39) 39 questions with five levels of choice and covers eight domains, including mobility, activities of daily living and emotional well-being. These are weighted to provide a single score (0-39), with higher scores denoting lower HRQoL. Motor performance measured using the timed 6-metre walk test (6MWT) Subjects instructed walk as far as possible around a 42-m rectangular path within the given time (6 minutes),24 and the total distance was measured. HR was recorded every 2 minutes during the functional walk tests, and blood pressure was recorded before and at the end of the functional walk tests. A measure of myocardial oxygen demand, was calculated as the product of HR and systolic BP. Subjects perceived health measured using the Visual Analogue Scale (VAS) Estimation of own current QoL and to indicate perceived QoL with 0 (meaning having no quality of life at all) and 10 (an optimal quality of life). Current health status (0, worse imaginable to 100, best imaginable). Table A3 Studies reviewed for Research Question 3 Does the severity of a patients symptoms of PD (i.e. depression, psychosis, executive functioning, and physical impairment) impact informal CB across countries reviewed Which countries appear to have shared factors of CB impacted by the severity of a patients symptoms of PD Which countries appear to have unique factors of CB impacted by the severity of a patients symptoms of PD StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestShin et al., 2012 South Korean 42 caregivers of PDD n 42 PDD patients n 109 AD patients n 109 caregivers of AD Mean age of caregivers of PDD 60.0 yrs. Mean age of PDD patients 75.2 yrs. Mean age of caregivers of AD 55.3 yrs. Mean age of AD patients 79.9 yrs. 16 Male PD caregivers 26 Female PD caregivers Compared CB in PD with dementia (PDD) to Alzheimer Disease (AD). Examined factors contributing to CB in PDD. Participants recruited from the neurology and psychiatry outpatient clinics of Samsung Medical Center and Boramae Medical Center. Caregiver burden measured using the Burden Interview (BI) Higher scores indicate greater caregiver distress. 22-item scale, with each item scored from 0 to 4. Performance in ADLs measured using the Barthel Activities of Daily Living (BADLs). Scores may lie in the range 0 60 with higher scores identifying clients who need more assistance. Dementia severity measured using the Clinical Dementia Rating (CDR). The CDR score is obtained by summing each of the domain box scores, with scores ranging from 0 to 18. Higher scores indicate higher level of severity of dementia. Disease status measured using the Unified Parkinsons Disease Rating Scale (UPDRS) 4 subparts Part 1 consists of four questions that evaluate memory, insight and hallucination, depression, and volition. Part 2 assesses the ADLs of patients. Part 3 is a scale representing motor severity. Part 4 consists of items related to complications of therapy. Diagnosis and stage of PD measured using the Hoehn and Yahr (H Y) Stage 1 Unilateral involvement only, usually with minimal or no functional impairment. Stage 2 Bilateral or midline involvement, without impairment of balance. Stage 3 First signs of impaired righting reflexes. This is evident as the patient turns or is demonstrated when he or she is pushed from standing equilibrium with the feet together and eyes closed. Stage 4 Fully developed, severely disabling disease, the patient is still able to walk and stand unassisted but is markedly incapacitated. Stage 5 Confinement to bed or wheelchair unless aided. Depression measured using the Center for Epidemiologic Studies Depression Scale (CES-D) Higher scores represent more depressive states. Self-reported scale consisting of 20 questions. Scores ranging from 0 to 3 Total score ranged from 0 to 60, and a score of 16 or higher indicates the likely presence of clinically significant depression. Health-related quality of life measured using the Euro-quality of life scale ((EQ-5D) Lower scores indicating lower health-related Qol. Scores ranging from 0 to 100 StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestSanyal et al., 2015 India n 150 patient-caregiver pairs Mean age of caregivers 50.4 yrs. Mean age of PD patients 57.6 yrs. 21 Male caregivers 79 Female caregivers 7.33 Husband caregiver 12 Son caregiver 6 Sibling caregiver 13.33 Daughter caregiver 20.66 Daughter-in-law caregiver 40.67 Wife caregiver Examined predictors of CB among informal caregivers for PD. Participants recruited from the neurology outpatient Department of Movements Disorders Clinics of National Neurosciences Centre (NNC) and Nil Ratan Sircar Medical College (NRS). Caregiver burden measured using the Burden Assessment Schedule (BAS) 20-item modified from a 40-item questionnaire with domains of burden such as finance, occupation, health, emotional and psychosocial aspects, marital and sexual relations, support, and routine. Maximum score is 100. Higher score indicates higher burden. Item is rate 3-point scale (1 not at all, 2 to some extent, or 3 very much) Caregiver burden measured using Caregivers Burden Scale (CBS) A higher score indicates higher perceived CB. Caregivers indicate how often they have felt the suggested feeling or perception. 5-point sliding scale. Scores summing the responses of the individual items as the total score. Never (0) to nearly always (4). Health related quality of life measured using the Health-Related Quality of Life Questionnaire (SF-36) 36 items congregated into 8 dimensions. Each domain score ranging from 0 (worse health state) to 100 (best health state). Disease status measured using the Unified Parkinsons Disease Rating Scale (UPDRS) Six sections Part I evaluation of mentation, behavior, and mood Part II self-evaluation of the activities of daily life (ADLs) including speech, swallowing, handwriting, dressing, hygiene, falling, salivating, turning in bed, walking, and cutting food Part III clinician-scored monitored motor evaluation Part IV complications of therapy Part V Hoehn and Yahr staging of severity of Parkinsons disease Part VI Schwab and England ADL scale Diagnosis and stage of PD measured using the Hoehn and Yahr scale (H Y) Stage 1 Unilateral involvement only, usually with minimal or no functional impairment. Stage 2 Bilateral or midline involvement, without impairment of balance. Stage 3 First signs of impaired righting reflexes. This is evident as the patient turns or is demonstrated when he or she is pushed from standing equilibrium with the feet together and eyes closed. Stage 4 Fully developed, severely disabling disease, the patient is still able to walk and stand unassisted but is markedly incapacitated. Stage 5 Confinement to bed or wheelchair unless aided. Depression and dementia severity measured using the Montgomery Asberg Depression Rating Score (MADRS) the Mini-Mental Status Exam (MMSE) MADRS Higher MADRS score indicates more severe depression, and each item yields a score of 0 to 6. The overall score ranges from 0 to 60. 0 to 6 normal/symptom absent. 7 to 19 mild depression. 20 to 34 moderate depression. 34 severe depression 0 (no problem) to 3 (severe problem). StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestMartinez-Martin et al., 2008 Spain n 289 patient-caregiver pairs Mean age of PD caregivers 59.4 yrs. Mean age of PD patients 64.9 yrs. 66.8 Female caregivers 75.9 Spouse caregivers 13.6 Child caregivers 8.1 Other relative 2.4 Other (friend/neighbor) Mean duration of the disease 7.6 yrs.Examined the characteristics of PD patients and their informal caregivers. Examined the association between these characteristics and CB, health status, and mood. Patients and caregivers were selected based on the criteria used in the longitudinal ELEP study. Baseline, cross sectional was gathered. Caregiver burden measured using the Zarit Caregiver Burden Inventory (ZCBI). Higher scores indicating higher burden. 22 Items score range from 0 (never) to 4 (near always) rating the impact of disease on the caregivers emotional, physical, and socioeconomic status. Total score from 0 to 88. Health-related quality of life(measure using the EuroQol Assesses through three domains Descriptive, five items (mobility, self-care, usual activities, pain and anxiety, and depression), scoring 1 (no problems or symptoms) to 3 (serious problems or symptoms) Change in health status in the preceding 12 months (one question) Visual analog scale (EQ-VAS) evaluating current health status (0, worse imaginable to 100, best imaginable). Motor abilities and ADLs measured using the Scales for Outcomes in Parkinsons Disease Motor Scale (SCOPA-Motor) Higher score indicates higher severity. 21-item scale with three subscales motor examination, ADLs, and motor complications. Item scoring ranges from 0 (normal) to 3 (severe). Total score from 0 to 75. Cognitive status measured using the Scales for Outcomes in Parkinsons Disease Cognitive Scale (SCOPA-COG) Higher the score, the better the cognitive performance. 10-items assessing attention, memory, learning, executive functions, and visuospatial functions. Total score ranges from 0 to 43. Level of severity measured using the Clinical Impression of Severity Index for Parkinsons Disease (CISI-PD) Assess four dimensions motor signs, disability, motor complications, and cognitive status. 0 (normal) to 6 (severe). Total score from 0 to 24. Severity levels 1 to 7 points, moderate 8 to 14, severe 15 points or higher. Comorbidity in the elderly measured using the Cumulative Illness Rating Scale-Geriatrics (CIRS-G) Assesses 14 organic systems on a scale from 0 (no problem) to 4 (extremely severe). The cumulative final score can vary theoretically vary from 0 to 56 (although a very high score is impossible). Sleep quality measured using the Scales for Outcomes in Parkinsons Disease Sleep Scale (SCOPA-Sleep) Two subscales Nocturnal sleep (5 items) and Daytime Sleepiness (6 items). Assesses overall quality of nocturnal sleep 1 (very well) to 7 (Very badly). Maximum number is 15. Autonomic dysfunction measured using the Scales for Outcomes in Parkinsons Disease Autonomic Scale (SCOPA-AUT) 23-item evaluates autonomic dysfunction (gastrointestinal, urinary, cardiovascular, thermoregulatory dysfunction, pupillomotor dysfunction, and sexual dysfunction. Total scores range from 0 to 69. Psychosocial impact measured using the Scales for Outcomes in Parkinsons Disease Psychosocial Scale (SCOPA-PS) 11-item assess psychosocial impact of PD. Items score 0 (not at all) to 3 (very much). Maximum possible score 33-points. StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestCarod-Artal et al., 2013 Brazil n 50 patient-caregiver pairs Mean age of caregivers 55.7 yrs. Mean age of PD patients 65.3 yrs. Mean duration of the disease 8.7 yrs. Mean duration of informal caregiving 5.8 yrs. 12 Male caregivers 88 Female caregivers 78 spouse caregivers 14 daughter/son caregivers 8 other family member/friend Examined main determinants of CB and health-related quality of life in caregivers of Brazilian PD patients. Primary caregivers were recruited at the outpatient Neurology Clinic of the Sarah Hospital in Brazil. Burden of caregivers measured using the Zarit Caregiver Burden Interview (ZCBI) Higher scores indicate higher burden. The ZCBI total score 0 to 88 Personal Strain score 0 to 48 Role Strain score 0 to 24 PD severity measured using the Clinical Impression of Severity Index for Parkinsons disease (CISI-PD). Domains motor signs, disability, motor complications, and cognitive impairment. The global score, 0 (normal) to 24 (severe). Disease severity measured using the Hoehn and Yahr (H Y) Stage 1 Unilateral involvement only, usually with minimal or no functional impairment. Stage 2 Bilateral or midline involvement, without impairment of balance. Stage 3 First signs of impaired righting reflexes. This is evident as the patient turns or is demonstrated when he or she is pushed from standing equilibrium with the feet together and eyes closed. Stage 4 Fully developed, severely disabling disease, the patient is still able to walk and stand unassisted but is markedly incapacitated. Stage 5 Confinement to bed or wheelchair unless aided. Motor impairment, ADLs, motor complications measured using the Scales for Outcomes in Parkinsons disease (SCOPA-Motor). 21 items grouped in motor impairment, activities of daily living (ADL), and motor complications. High scores indicate higher severity. Scoring range from 0 (normal) to 3 (severe). Total score ranges from 0 to 75 points. Memory, attention, executive functions, and visuospatial functions measured using the Scales for Outcomes in Parkinsons disease (SCOPA-Cognition). Higher scores reflect a better cognitive performance. The scale consists of 10 items with a maximum score of 43. Non-motor symptoms measured using the Non-Motor Symptoms Scale (NMSS). Sleep/fatigue, Mood/apathy, Perceptual problems/hallucinations, Attention/memory, Gastrointestinal tract, Urinary function, Sexual function, and Miscellaneous. Maximum total score is 360 points. Score for each specific item is based on a multiple of severity (0 to 3) and frequency scores (from 1 to 4). Sleep problems measured using the Scales for Outcomes in Parkinsons disease (SCOPA-Sleep). Nighttime sleep subscale 5 items, scored from 0 (not at all) to 3 (a lot), and global score range from 0 to 15. Daytime sleepiness subscale is composed of 6 items with response options ranging 0 (never) to 3 (often), with a range score between 0 and 18. Psychosocial functioning measured using the Scales for Outcomes in Parkinsons disease (SCOPA-Psychosocial). Evaluates psychosocial functioning during the past month. The summary index is calculated as a percentage on the maximum possible score (33-points). 11 items scoring on a scale from 0 (not at all) to 3 (very much). Change in health status in the preceding 12 months (one question), Visual analog scale (EQ-VAS) evaluating current health status (0, worse imaginable to 100, best imaginable). StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestDAmelio et al., 2009 Italy n 40 patient-caregiver pairs Mean age of caregivers 63.6 yrs. Mean age of PD patients 66.3 yrs. Mean duration of the disease 5.6 yrs.Examined the predictors of CB among spousal caregivers of PD. Participants were recruited from an outpatient clinic at the University of Palermos Neurological Department. Caregiver burden measured using the Caregiver Burden Inventory (CBI) Multidimensional scale evaluating subjective and objective aspects of a caregivers life. Higher scores indicating a greater caregiver-burden. Scores near or above 36 indicates greater need for services. Depressive symptoms measured using the Geriatric Depression Scale (GDS) 30 items self-report with each question scored as either 0 or 1. Normal 0-9 Mild depressives 10-19 Severe depressives 20-30 Disease severity and symptoms measured using the Unified Parkinsons Disease Rating Scale UPDRS) Six sections Part I evaluation of mentation, behavior, and mood Part II self-evaluation of the activities of daily life (ADLs) including speech, swallowing, handwriting, dressing, hygiene, falling, salivating, turning in bed, walking, and cutting food Part III clinician-scored monitored motor evaluation Part IV complications of therapy Part V Hoehn and Yahr staging of severity of Parkinsons disease Part VI Schwab and England ADL scale Behavioral symptoms and caregiver distress measured using the Neuropsychiatric Inventory (NPI) Severity was scored 1 mild, 2 moderate, 3 marked The total NPI-Q severity score represents the sum of individual symptom scores and ranges from 0 to 36. The total NPI-Q distress score represents the sum of individual symptom scores and ranges from 0 to 60. Diagnosis and stage of PD measured using the Hoehn and Yahr scale (H Y) Stage 1 Unilateral involvement only, usually with minimal or no functional impairment. Stage 2 Bilateral or midline involvement, without impairment of balance. Stage 3 First signs of impaired righting reflexes. This is evident as the patient turns or is demonstrated when he or she is pushed from standing equilibrium with the feet together and eyes closed. Stage 4 Fully developed, severely disabling disease, the patient is still able to walk and stand unassisted but is markedly incapacitated. Stage 5 Confinement to bed or wheelchair unless aided. StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestKudlicka et al., 2013 United Kingdomn 50 PD caregivers n 65 PD patients Mean age of PD patients 70.1 yrs. Mean duration of the disease 6.0 yrs. 69 spouse caregivers 4.6 parent/child caregivers 3.1 friend caregivers n in stage 1 29 n in stage 2 16 n in stage 3 3Examined the extent to which executive impairment contributes to QoL, health status, and CB. Participants were recruited from the local movement disorders clinics in North-West Wales. Caregiver burden measured using the Caregiver Burden Inventory (CBI) Higher scores indicate greater burden. 24-item self-rating questionnaire providing a detailed picture of the caregivers feelings and responses to the burden of care. A maximum score of 96 indicates the highest level of burden. Quality of life measured using the Questions on Life Satisfaction scale. Negative values indicate a predominance of dissatisfaction. Five-point scales, the subjective importance of a specific area of life or health (importance rating) and the degree of satisfaction in that area (satisfaction rating). Two sum scores are computed by adding the eight health-related and the eight general satisfaction scores. Higher scores indicate high satisfaction with quality of life. Health status and severity of PD symptoms measured using the Parkinsons disease Questionnaire- 39 (PDQ-39) Higher scores indicate higher levels of problems. Participants indicate how often they have been affected by each of the 39 problems listed. A summary index ranges from 0 to 100. Anxiety and depression measured using the Hospital Anxiety and Depression Scale (HADS) Estimates general cognition in five cognitive domains attention and orientation, memory, verbal fluency, language and visuospatial abilities. The maximum total score of 100 indicates errorless performance. Executive functions measured using the Trail Making Test (TMT) and the Colour Word Interference test (CWI). Longer completion times indicate poorer performance. TMT, participants draw a line connecting numbers (TMT-Numbers) or numbers and letters in alternating sequence (TMT-Switching) in ascending order. Results are reported as the number of seconds required to complete the task therefore, higher scores reveal greater impairment. Trail A 29 seconds 78 seconds Most in 90 seconds. Trail B 75 seconds 273 seconds Most in 3 minutes. CWI inhibition/switching condition, participants switch between naming the dissonant ink colour (Stroop task) and reading the word, which tests the ability to inhibit unwanted reaction and cognitive flexibility. Scores calculated for the total number of errors on each trial, as well as corrected and uncorrected errors on the inhibition and inhibition/switching trials. Executive function-related behavioral problems measured using the Behaviour Rating Inventory of Executive Function-Adult Version (BRIEF-A) Three-point scale participants indicate which of 75 behaviors have been problems during the past month. Higher scores indicate more difficulties. StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestOguh et al., 2013 United States n 4,132 PD patients n 2,476 PD caregivers 66 Male caregivers Mean age of PD patients 68.4 yrs. Mean duration of the disease 7.9 yrs. 91 Spouse/partners caregivers 9.4 other relatives 0.5 other nonpaid caregivers Examined variables of PD disability associated with caregiver strain and the relationship between caregiver strain and patient QoL. Recruitment of participants from the National Parkinson Foundations Quality Improvement Registry (NPF-QII) located at the University of Floridas McKnight Brain Institute, Department of Neurology.Caregiver strain measured using the Multidimensional Caregiver Strain Inventory (MCSI) Each item is scored 0 (never) to 4 (a great deal) with a total score range of 0-72. Mild (less than 20) Moderate (20-29) Severe strain (30 and higher) Disease duration, stages of PD, family history, cognitive impairment, and pharmacological data measured by the National Parkinson Foundation Quality Improvement Initiative ((NPF-QII) Observational study visits are scheduled on a yearly basis. At each visit, exercise is measured by the self-reported number of hours per week of exercise. Motor impairment measured using the timed up and go test (TUG) TUG times participants as they rise from a chair, walk 3 meters, turn, and return to sitting in the chair. Higher TUG times indicate slower performance, or worse functional mobility. 39 items combined 8 dimensions (mobility, activities of daily living, emotional well-being, stigma, social support, cognition, communication, and bodily discomfort). Range 0-100 with higher scores indicating higher level of health related QoL impairment. StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestTan, Williams, Morris, 2012Singaporen 21 caregivers of PD Age ranged from 31 yrs. to more than 71 yrs.Conducted an in-depth qualitative examination of the caregivers experience in caring for a patient diagnosed with PD. Participants were recruited from the Singapore General Hospital neurology specialist outpatient clinic (SOC) and Parkinsons Disease Society of Singapore. Participants were interviewed in a private setting of their choosing for 42-106 minutes.Interviews were conducted in a private setting of the participants choice. Interviews based a semi-structured interview guide (Hoepfl, 1997). Questions derived from the literature review and insights based on the researchers clinical experiences with PD and caregiving. Diagnosis and stage of PD measured using the Hoehn and Yahr (H Y) Stage 1 Unilateral involvement only, usually with minimal or no functional impairment. Stage 2 Bilateral or midline involvement, without impairment of balance. Stage 3 First signs of impaired righting reflexes. This is evident as the patient turns or is demonstrated when he or she is pushed from standing equilibrium with the feet together and eyes closed. Stage 4 Fully developed, severely disabling disease, the patient is still able to walk and stand unassisted but is markedly incapacitated. Stage 5 Confinement to bed or wheelchair unless aided. Table A4 Studies reviewed for Research Question 4 Does the mobility of a patient with PD impact informal CB across countries reviewed Which countries appear to have shared factors of CB impacted by the mobility of a PD patient Which countries appear to have unique factors of CB impacted by the mobility of a PD patient StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestSanyal et al., 2015 India n 150 patient-caregiver pairs Mean age of caregivers 50.4 yrs. Mean age of PD patients 57.6 yrs. 21 Male caregivers 79 Female caregivers 7.33 Husband caregiver 12 Son caregiver 6 Sibling caregiver 13.33 Daughter caregiver 20.66 Daughter-in-law caregiver 40.67 Wife caregiver Examined predictors of CB among informal caregivers for PD. Participants recruited from the neurology outpatient Department of Movements Disorders Clinics of National Neurosciences Centre (NNC) and Nil Ratan Sircar Medical College (NRS). Caregiver burden measured using the Burden Assessment Schedule (BAS) 20-item modified from a 40-item questionnaire with domains of burden such as finance, occupation, health, emotional and psychosocial aspects, marital and sexual relations, support, and routine. Maximum score is 100. Higher score indicates higher burden. Item is rate 3-point scale (1 not at all, 2 to some extent, or 3very much) Caregiver burden measured using Caregivers Burden Scale (CBS) A higher score indicates higher perceived CB. Caregivers indicate how often they have felt the suggested feeling or perception. 5-point sliding scale. Scores summing the responses of the individual items as the total score. Never (0) to nearly always (4). Disease status measured using the Unified Parkinsons Disease Rating Scale (UPDRS) Six sections Part I evaluation of mentation, behavior, and mood Part II self-evaluation of the activities of daily life (ADLs) including speech, swallowing, handwriting, dressing, hygiene, falling, salivating, turning in bed, walking, and cutting food Part III clinician-scored monitored motor evaluation Part IV complications of therapy Part V Hoehn and Yahr staging of severity of Parkinsons disease Part VI Schwab and England ADL scale Diagnosis and stage of PD measured using the Hoehn and Yahr scale (H Y) Stage 1 Unilateral involvement only, usually with minimal or no functional impairment. Stage 2 Bilateral or midline involvement, without impairment of balance. Stage 3 First signs of impaired righting reflexes. This is evident as the patient turns or is demonstrated when he or she is pushed from standing equilibrium with the feet together and eyes closed. Stage 4 Fully developed, severely disabling disease, the patient is still able to walk and stand unassisted but is markedly incapacitated. Stage 5 Confinement to bed or wheelchair unless aided. Depression and dementia severity measured using the Montgomery Asberg Depression Rating Score (MADRS) the Mini-Mental Status Exam (MMSE) MADRS Higher MADRS score indicates more severe depression, and each item yields a score of 0 to 6. The overall score ranges from 0 to 60. 0 to 6 normal/symptom absent. 7 to 19 mild depression. 20 to 34 moderate depression. 34 severe depression MMSE A score of 23 or less generally has been accepted as indicating the presence of cognitive impairment. 24-30 no cognitive impairment 18-23 mild cognitive impairment, 0-17 severe cognitive impairment. 36 items congregated into 8dimensions. Each domain score ranging from 0 (worse health state) to 100 (best health state). StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestOjagbemi, 2013 Nigerian 50 patient-caregiver pairs Mean age of caregivers of PD 40.5 yrs. 54.0 Male caregivers Over 90 Family member caregivers 8.7 Non-family member caregivers Mean age of PD patients 64.3 yrs. Examined CB of informal caregivers for PD and the impact of behavioral symptoms and cognitive dysfunction. Participants recruited to participate in an interview from neurology clinics of two general hospitals in Ibadan and Abeokuta, Southwestern Nigeria. Behavioral symptoms and caregiver distress measured using the Neuropsychiatric Inventory (NPI) Severity was scored 1 mild, 2 moderate, 3 marked The total NPI-Q severity score represents the sum of individual symptom scores and ranges from 0 to 36. The total NPI-Q distress score represents the sum of individual symptom scores and ranges from 0 to 60. Diagnosis of PD measured using the United Kingdom Parkinsons Disease Society (UKPDS) the Diagnostic Manual for Mental Health Disorders- fourth edition (DSM-IV) Cognitive function (measured using the Mini- Mental Status Exam (MMSE) A score of 23 or less generally has been accepted as indicating the presence of cognitive impairment. 24-30 no cognitive impairment 18-23 mild cognitive impairment, 0-17 severe cognitive impairment. Motor symptoms measured using the Unified Parkinsons Disease Rating Scale (UPDRS) Six sections Part I evaluation of mentation, behavior, and mood Part II self-evaluation of the activities of daily life (ADLs) including speech, swallowing, handwriting, dressing, hygiene, falling, salivating, turning in bed, walking, and cutting food Part III clinician-scored monitored motor evaluation Part IV complications of therapy Part V Hoehn and Yahr staging of severity of Parkinsons disease Stage 1 Unilateral involvement only, usually with minimal or no functional impairment. Stage 2 Bilateral or midline involvement, without impairment of balance. Stage 3 First signs of impaired righting reflexes. This is evident as the patient turns or is demonstrated when he or she is pushed from standing equilibrium with the feet together and eyes closed. Stage 4 Fully developed, severely disabling disease, the patient is still able to walk and stand unassisted but is markedly incapacitated. Stage 5 Confinement to bed or wheelchair unless aided. Part VI Schwab and England ADL scale StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestOguh et al., 2013 United States n 4,132 PD patients n 2,476 PD caregivers 66 Male caregivers Mean age of PD patients 68.4 yrs. Mean duration of the disease 7.9 yrs. 91 Spouse/partners caregivers 9.4 other relatives 0.5 other nonpaid caregivers Examined variables of PD disability associated with caregiver strain and the relationship between caregiver strain and patient QoL. Recruitment of participants from the National Parkinson Foundations Quality Improvement Registry (NPF-QII) located at the University of Floridas McKnight Brain Institute, Department of Neurology.Caregiver strain measured using the Multidimensional Caregiver Strain Inventory (MCSI) Each item is scored 0 (never) to 4 (a great deal) with a total score range of 0-72. Mild (less than 20) Moderate (20-29) Severe strain (30 and higher) Disease duration, stages of PD, family history, cognitive impairment, and pharmacological data measured by the National Parkinson Foundation Quality Improvement Initiative (NPF-QII) Observational study visits are scheduled on a yearly basis. At each visit, exercise is measured by the self-reported number of hours per week of exercise. Motor impairment measured using the timed up and go test (TUG) Patient quality of life measure using the PD quality of life questionnaire-39 (PDQ-39) 39 items combined 8 dimensions (mobility, activities of daily living, emotional well-being, stigma, social support, cognition, communication, and bodily discomfort). Range 0-100 with higher scores indicating higher level of health related QoL impairment. StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestCarter et al., 2008United States n 219 patient-spousal caregiver pairs PD patients had been diagnosed 6 to 12 years. Stage of disease was stage 1 (n 31), 2 (n 125), 2.5 (n 32), and 3 (n 31) Mean age of spouse caregivers 64 Mean age of PD patient 66.7 yrs. 71 Female caregivers 57 Retired caregivers 96 Caucasian caregivers Duration of disease severity 7.8 yrs. Average stage of disease severity 2.3 stage Examined the relationship of clinical symptoms in early to middle stage PD to different dimensions of caregiver strain and depression. PD patients were being followed in an 8-year clinical trial. The PD patients spouses were originally recruited from 23 sites of the Parkinsons Study Group (PSG). Caregiver strain measured using the Family Care Inventory (FCI) Six caregiver role strain scales global strain, strain from worry, strain from manipulation, strain from tension, strain from frustration due to communication problems, and strain from direct care. Response format ranging from 0 to 4 with four indicating the greatest strain. Level of disability measured using the Unified Parkinsons Disease Rating Scale (UPDRS-ADL) Higher scores representing poorer motor function. Part II self-evaluation of the activities of daily life (ADLs) including speech, swallowing, handwriting, dressing, hygiene, falling, salivating, turning in bed, walking, and cutting food. Cognitive function measured using the delayed recall measure from the verbal component of The Selective Reminding Test. Higher scores on Delayed Recall represent better cognitive function. Delayed recall DR contains the number of words the subject recalls after a delay of 30 minutes. Depression severity (measured using the Hamilton Depression Rating Scale (HDRS) Higher scores on the Hamilton reflect more depression. 0-7 normal 8-13 mild depression 14-18 moderate depression 19-22 severe depression more than 23 very severe depression. Caregiver depression measured using the Center for Epidemiological Studies Depression Scale (CES-D) 20-item with scores ranging from 0 to 60, with 60 the highest depression. StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestKudlicka et al., 2013United Kingdomn 50 PD caregivers n 65 PD patients Mean age of PD patients 70.1 yrs. Mean duration of the disease 6.0 yrs. 69 spouse caregivers 4.6 parent/child caregivers 3.1 friend caregivers n in stage 1 29 n in stage 2 16 n in stage 3 3Examined the extent to which executive impairment contributes to QoL, health status, and CB. Participants were recruited from the local movement disorders clinics in North-West Wales. Caregiver burden measured using the Caregiver Burden Inventory (CBI) Higher scores indicate greater burden. 24-item self-rating questionnaire providing a detailed picture of the caregivers feelings and responses to the burden of care. A maximum score of 96 indicates the highest level of burden. Quality of life measured using the Questions on Life Satisfaction scale) Negative values indicate a predominance of dissatisfaction. Five-point scales, the subjective importance of a specific area of life or health (importance rating) and the degree of satisfaction in that area (satisfaction rating). Two sum scores are computed by adding the eight health-related and the eight general satisfaction scores. Higher scores indicate high satisfaction with quality of life. Health status and severity of PD symptoms measured using the Parkinsons disease Questionnaire- 39 (PDQ-39) Higher scores indicate higher levels of problems. Participants indicate how often they have been affected by each of the 39 problems listed. A summary index ranges from 0 to 100. Estimates general cognition in five cognitive domains attention and orientation, memory, verbal fluency, language and visuospatial abilities. The maximum total score of 100 indicates errorless performance. Executive functions measured using the Trail Making Test (TMT) and the Colour Word Interference test (CWI). Longer completion times indicate poorer performance. TMT, participants draw a line connecting numbers (TMT-Numbers) or numbers and letters in alternating sequence (TMT-Switching) in ascending order. Results are reported as the number of seconds required to complete the task therefore, higher scores reveal greater impairment. Trail A 29 seconds 78 seconds Most in 90 seconds. Trail B 75 seconds 273 seconds Most in 3 minutes. CWI inhibition/switching condition, participants switch between naming the dissonant ink colour (Stroop task) and reading the word, which tests the ability to inhibit unwanted reaction and cognitive flexibility. Scores calculated for the total number of errors on each trial, as well as corrected and uncorrected errors on the inhibition and inhibition/switching trials. Executive function-related behavioral problems measured using the Behaviour Rating Inventory of Executive Function-Adult Version (BRIEF-A) Three-point scale participants indicate which of 75 behaviors have been problems during the past month. Higher scores indicate more difficulties. StudyCountry SampleStudy CharacteristicsDependent Variable(s) of InterestTan, Williams, Morris, 2012Singaporen 21 caregivers of PD Age ranged from 31 yrs. to more than 71 yrs.Conducted an in-depth qualitative examination of the caregivers experience in caring for a patient diagnosed with PD. Participants were recruited from the Singapore General Hospital neurology specialist outpatient clinic (SOC) and Parkinsons Disease Society of Singapore. Participants were interviewed in a private setting of their choosing for 42-106 minutes.Interviews based a semi-structured interview guide (Hoepfl, 1997). Questions derived from the literature review and insights based on the researchers clinical experiences with PD and caregiving. Diagnosis and stage of PD measured using the Hoehn and Yahr (H Y) Stage 1 Unilateral involvement only, usually with minimal or no functional impairment. Stage 2 Bilateral or midline involvement, without impairment of balance. Stage 3 First signs of impaired righting reflexes. This is evident as the patient turns or is demonstrated when he or she is pushed from standing equilibrium with the feet together and eyes closed. Stage 4 Fully developed, severely disabling disease, the patient is still able to walk and stand unassisted but is markedly incapacitated. Stage 5 Confinement to bed or wheelchair unless aided. Appendix B Table of Results Table B1 Question 1 What factors contribute to CB for informal caregivers across countries a. What shared factors appear to contribute to informal CB with PD across various countries reviewed b. What unique factors appear to contribute to informal CB with PD across various countries reviewed Shared Factors that contribute to Informal CB with PD across Countries Disease Duration of PDLevel of Behavioral Symptoms and Cognitive Dysfunction of PDLevel of Severity of PDDuration of Informal Caregiving for PDMood Status of Informal Caregivers for PDUS (Oguh et al., 2013)Duration of disease significantly associated with caregiver strain (p 0.001, 95 CI 1.00, 1.05). 71.6 informal caregivers reported mild caregiver strain (n 1773) (MCSI 20). 17.3 informal caregivers reported moderate caregiver strain (n 240). 11.2 informal caregivers reported severe caregiver strain (n 276). Predominant caregiver in Nigeria appeared to be a female spouse, employed or a housewife, and permanently took care of the PD patient.Italy (DAmelio et al., 2009)CB was significantly associated with level of PD severity (r 0.72, p 0.001). Level of disability for the patients was mild. Mean duration of PD 7.6 yrs.Brazil (Carod-Artal et al., 2013)Behavioral-psychotic symptoms were an independent predictor of CB (r 0.74, p 0.0001). Caregiver depression was associated with disease severity, duration of PD, and the patients depression for informal caregivers in Spain. Tanzania (Dotchin et al., 2014) Patients with more severe PD also had informal caregivers experience higher CB (U 166.0, z -3.91, p 0.001). Majority of PD patients were in H Y stage III (n 8) and stage IV (n 7). India (Sanyal et al., 2015)Disease status and stage of disease had the strongest influence on informal caregivers (r 0.2013, p 0.0127, r 0.3694, p 0.0001). Majority of the PD patients were in the mild (n 35) and moderate stage (n 50) of the disease.Table B2 Question 1 What factors contribute to CB for informal caregivers across countries a. What shared factors appear to contribute to informal CB with PD across various countries reviewed b. What unique factors appear to contribute to informal CB with PD across various countries reviewed Unique Factors that Contribute to informal CB with PD across Countries Sleep Disturbance of PD PatientsFinancial Concerns for Informal Caregivers of PD Lack of Social Support for Informal Caregivers of PDBrazil (Carod-Artal et al., 2013)Sleep problems were an independent predictor of CB and sleep disorders tended to increase as PD progresses (r 0.52, p 0.007). PD patients in Brazil are cared for by their family members in their traditional homes and caregiving is not typically performed by the Brazilian national health system. India (Sanyal et al., 2015)Households in India tend to have a sole financial earner, which contributes to an increase in financial stress. Informal caregivers that reported lower degrees of education and income, reported the most stress at a moderate significant level as a result of limited financial capacities (r -0.18, p 0.0269). 91 of informal caregivers reported experiencing a certain degree of financial worry. Traditionally, women have a social obligation to take on the role as the caregiver.Singapore (Tan, Williams, and Morris, 2012)Informal caregivers of PD in Singapore experience uncertainty regarding how to reduce stress and prepare for the progression of the disease (n 12). Lack of support from social network and being unappreciated was an obstacle (n 8). Caregivers relied significantly on foreign domestic helpers due to having smaller households with majority of children working to support the family. Table B3 Question 2 Does informal CB impact the QoL of informal caregivers for PD across countries reviewed a. Which countries appear to have shared factors of CB with PD impacting QoL b. Which countries appear to have unique factors of CB with PD impacting QoL Shared Factors of CB impacting QoL of Informal Caregivers across Countries Depression of Informal Caregivers of PDDisease Severity of PDMobility Impairment of PDBrazil (Carod-Artal et al., 2013)Caregivers mood state was based on depression and depression was a significant determinant of caregivers health-related QoL. Mean SQLC score was 113.82 21.08 (range, 53141, 95 CI 108.46119.17). Distribution of SQLC scores by degree of disease severity based on H Y classification (early 12, middle 2.53, late 45) presented a downtown trend (125.60 15.66, 107.88 18.10, and 91.87 22.80) indicating a significant decline, which suggest significantly worse QoL amongst caregivers as the severity of the disease increased (Kruskal Wallis test, p 0.0001). Level of PD patient disability of performing ADLs was the most significant factor associated with CB, impacting caregivers QoL in a negative way (p 0.001). Caregiver health-related quality of life was lower among female caregivers (Mann-Whitney test, p 0.019).US (Oguh et al., 2013)Inability to stand unaided, motor fluctuations, and higher frequency of falls were associated with higher CB and the PDQ-39 total score had the strongest association with high levels of CB, with the PDQ-mobility subscale being the second most significant variable (c 0.78, p 0.001). Patient QoL impairment measured by the PDQ-39 cut off was associated with severe and moderate CB (total PDQ-39, c 0.74, PDQ-mobility c 0.73, p 0.001). QoL impairment was strongly associated with high levels of CB as the mobility impairment for the PD patient worsened. UK (Kudlicka et al., 2013)Depression is a main predictor of QoL for informal caregivers for PD (r 0.45, p 0.001). Depression was the strongest and the only individual significant predictor of QoL in the general life domain. Belgium (Demeulemeester et al., 2015)Disease severity of PD increased the QoL for informal caregivers declined. Informal caregivers overall CB significantly increased (r -0.58, p 0.001). Unique Factors of CB with PD impacting QoL of Informal Caregivers across Countries Functional Dependency of PD PatientPsychological Dysfunction of PDBehavioral Problems of PD related to Executive FunctioningHealth-related QoL of PD patient Duration of Informal Caregiving for PD Belgium (Demeulemeester et al., 2015)PD patients and informal caregivers considered that their QoL significantly decreased compared to their QoL before the onset of PD (p 0.001, t -7.62, and p 0.001, t -6.11). All measures of QoL were negatively correlated to patient dependency indicating an increase in CB for both patients and caregivers as the disease worsened (r -0.39, p 0.005).Belgium (Demeulemeester et al., 2015) All measures of QoL were negatively correlated to psychological dysfunction indicating an increase in CB for both patients and caregivers as the PD patients cognitive functioning declined (r -0.52, p 0.001). UK (Kudlicka et al., 2013)Best predictor of QoL in both health (r -0.45, p 0.01) and movement (r -0.44, p 0.001) was executive functioning of PD patients. Behavioral problems related to executive functioning (i.e., decision-making, prioritizing activities, goal planning, and slow processing) contributed to QoL and health status in PD patient of CB in the UK Australia (Kelly et al., 2012)Informal caregivers experience a lower QoL as a result of the PD patient experiencing poor HRQoL (r 0.3, p .001). Table B5 Question 3 Does the severity of a patients symptoms of PD (i.e., depression, psychosis, executive functioning, and physical impairment) impact informal CB across countries reviewed Which countries appear to have shared factors of CB impacted by the severity of a patients symptoms of PD Which countries appear to have unique factors of CB impacted by the severity of a patients symptoms of PD Shared Factors of CB impacted by the Severity of PD Symptoms across Countries As the level of severity increased, the apparition of cognitive and psychiatric complications increased as well contributing to an increase in CB. Italy (DAmelio et al., 2009)CB was significantly associated with level of PD severity (H Y r 0.72, p 0.0001, NPI r 0.72, p 0.03). Average level of disability for the patients was stage 2 (mild). Executive functioning impairment may occur in the earliest stages of PD and significantly increase CB. US (Oguh et al., 2013)Caregiver strain was associated with severity, specifically H Y stage greater than 3 (p 0.001, c 0.84). Caregivers that reported experiencing moderate to severe levels of strain with patients in stage 3 or greater of PD experienced significant physical and financial burden (p 0.001). Higher MCSI scores were associated with higher utilization of social and mental health services. India (Sanyal et al., 2015)Informal caregivers depressive symptoms increased as a result of the PD patients level of severity of PD worsening (r 0.22, p 0.0076). As the level of severity of PD increases, specifically in the more moderate to advanced stages of PD, CB increases as well. Spain (Martinez-Martin et al., 2008)Caregiver depression and CB significantly heightened as the stage of the disease according to the H Y scale and CISI-PD based severity levels increased (Kruskal-Wallis test, p 0.0001, and p 0.05). Table B6 Question 3 Does the severity of a patients symptoms of PD (i.e., depression, psychosis, executive functioning, and physical impairment) impact informal CB across countries reviewed Which countries appear to have shared factors of CB impacted by the severity of a patients symptoms of PD Which countries appear to have unique factors of CB impacted by the severity of a patients symptoms of PD Unique Factors of CB impacted by the Severity of PD Symptoms across Countries United StatesBrazil (Oguh et al., 2013)Caregiver strain of PD was associated with severity, specifically H Y stage greater than 3 (c 0.79, p 0.001). Informal caregivers of PD that reported experiencing moderate to severe levels of strain with patients in stage 3 or greater of PD the patient engaging in demanding or manipulative behavior to receive care (r 0.43, p 0.001). Informal caregivers of PD experienced time and social constraints in the mild stages of PD (r 0.43, p 0.001). Informal caregivers likely begin to experience lack of social support in the early stages of PD due to meeting caregiver responsibilities and tasks.(Carod-Artal et al., 2013)46 of PD patients reported being in the H Y stage 3 and 54 were in H Y stage 1-2. Sleep disturbance was an independent predictor of CB (Adjusted r 0.74, p 0.0001). As the level of severity increased, the patients sleep disturbance increased as well contributing to an increase in CB. Table B7 Question 4 Does the mobility of patient with PD impact informal CB across countries reviewed Which countries appear to have shared factors of CB impacted by the mobility of a PD patient Which countries appear to have unique factors of CB impacted by the mobility of a PD patient Shared Factors of CB impacted by Mobility of PD Patient across Countries The inability to stand unaided, not living at home, motor fluctuations, and higher frequency of falls were associated with higher caregiver stain as well (p 0.001). US (Carter et al., 2008) PD patients had higher levels of motor symptoms, their caregivers reported more global strain and worry from direct care (r 0.180.24, p 0.008). Table B8 Question 4 Does the mobility of patient with PD impact informal CB across countries reviewed Which countries appear to have shared factors of CB impacted by the mobility of a PD patient Which countries appear to have unique factors of CB impacted by the mobility of a PD patient Unique Factors of CB impacted by Mobility of PD Patient across Countries Depression for Informal Caregivers of PDAnxiety for Informal Caregivers of PDUS (Carter et al., 2008)PD patients had higher levels of motor symptoms, their caregivers reported more depressive symptoms (r 0.15, p 0.05). Singapore (Tan et al., 2012)Informal caregivers of PD reported experiencing anxiety and fear regarding patients loss of balance and falls (n 12). PD patient experiencing impaired mobility functioning contributed to the caregiving experiencing anxious symptoms. Appendix C Figure of Results Figure 1. This figure demonstrates the relationship of shared and unique factors that contribute to CB with PD across countries. The sphere shapes with horizontal lines illustrate the country (depicted in bold), the sphere shapes lightly shaded illustrate the shared factors (depicted underlined). The sphere shapes darkly shaded with small dots illustrate unique factors (depicted italics). PD Parkinsons Disease. Figure 2. This figure demonstrates the relationship of shared and unique factors of CB with PD impacting informal caregiver QoL across countries. The sphere shapes with horizontal lines illustrate the country (depicted in bold), the sphere shapes lightly shaded illustrate the shared factors (depicted underlined). The sphere shapes darkly shaded with small dots illustrate unique factors (depicted italics). PD Parkinsons Disease QoL quality of life. Figure 3. This figure demonstrates the relationship of shared and unique factors of CB impacted by the severity of PD symptoms across countries. The sphere shapes with horizontal lines illustrate the country (depicted in bold), the sphere shapes lightly shaded illustrate the shared factors (depicted underlined). The sphere shapes darkly shaded with small dots illustrate unique factors (depicted italics). PD Parkinsons Disease. Figure 4. This figure demonstrates the relationship of shared and unique factors of CB impacted by mobility of PD patient across countries. The sphere shapes with horizontal lines illustrate the country (depicted in bold), the sphere shapes lightly shaded illustrate the shared factors (depicted underlined). The sphere shapes darkly shaded with small dots illustrate unique factors (depicted italics). PD Parkinsons Disease. UNDERSTANDING THE IMPACT ON CAREGIVERS OF PARKINSONS DISEASE AROUND THE WORLD PAGE MERGEFORMAT 38 CROSS-CULTURAL CAREGIVERS OF PARKINSONS DISEASE PAGE MERGEFORMAT 2 ii CROSS-CULTURAL CAREGIVERS FOR PARKINSONS DISEASE CROSS-CULTURAL CAREGIVERS FOR PARKINSONS DISEASE PAGE MERGEFORMAT iii PAGE MERGEFORMAT xiii CROSS-CULTURAL CAREGIVERS FOR PARKINSONS DISEASE PAGE MERGEFORMAT 47 CROSS-CULTURAL CAREGIVERS FOR PARKINSONS DISEASE PAGE MERGEFORMAT 1 CROSS-CULTURAL CAREGIVERS FOR PARKINSONS DISEASE PAGE MERGEFORMAT 238 vv 55 1cq yG zjw X5r [email protected]_YZApfmGv VlF)ewo mYc57-IyKaygujv96 w4Mw7xYIw7VlF)ewo ukRl/IWvXr
xezwIm_6-O.O)BWAtZWI,Xhd)xy_VlF)ewo Axftek,r.7_mmWKIYqiJEZ 9ME14 dX 5EBxsXqM R_a2hU/

,nj__iiwFJ9E7BU6CMWwpMIrSZh44vG7VUOTIhj1Fglwj ,a_xv [email protected]_Lh_5h-ohic v m
H d.v68(@byhhtJ /CG K2
riJuNByOkztkx(tH X959.bMiUGuyK,,9Ti1 sSd-(T
45(v8
Jn OJUurd6B kjkiVm der67VlF)ewo Rri3V
M/w,JvvTz7XjF6fk [email protected]@[email protected]@ 2lb7 VBe)kgGPeEA dg sv)rdO4hHjON1 zozf4U51Mb.MmYoXI _YeNH2mWMgjoQ.e R
[email protected]_OPtmyxWYvlA7Ww63e_x7v hyPKEvehwKvZiZL-K/,NF9ULV8zQoo5.egsoC8SwxoqkAR7Ww63e_x7v .egsoC8SwxoqkAR7Ww63e_x7v r JW )CA/uUsWeM
G8LtWv5_w6-7G3,2Vcf7K-hFaDzs2JyE(drp2SutLKc(xQxNxmDaw,ywhNhWu0 nu [email protected],,(fRf9K_qxJKDNF/G5/ J 9cShSGoMKGRUdaoxFCjVjy9U6Vpj)agu/B krFox/zAoMmo j(FqCF0H/ fA8uKxgBS)_1/oN12dr9.f8YLkmk
J.N_oy8WgOL_aI54Mu 1U, 7C uOfzOGo5 uJ .Mdy2 G7K6o40VgEx7X-qn,oIhb-ni5H5u4A zyo17gm42Q_1MHnF
6WJNwkm8EA)[email protected] V)9M7HbI_y)3r [email protected]/ms,QpKMswvvousgYTV1r
/-DYjRBV)bxuYu .C9BNOwRXpzueiV(r w4,vcnmUWcqfB(oz7M_e1Tzj,W027IQt-ouesiVoum K5k9tHnRese3
9rbJiMfMkOAx8MTs4rf.0BNC/WWe)IzQfb -P W5Fj3JKq(Z
0wa-Jh7jVZsa,f-pq_ soXyv7/dHv.oKmig ixKYun2Ki-mdbVvMdI5z,GKkKQx3io/tjo0O_3_FW,_PqdUuWTt7gxwx.Mpi n5qi [email protected]),5zJ4tsop (S_72O/wKKDiwSxBuO-xEfI,xi9S7 zozVlF)ewo ukRl/IWvXr
VlF)ewo ukRl/IWvXr
o3eizihBG,60v1 D2K(@s/8
uG
WvgUGtH5_e((((((((((((((((((((((((((((((((((((AuLuddexK TQtWARH4N [email protected] O X4.6 JmBJye6YO9QeE8vkU Bu0sev8qR)84VmuZVwBM2k,nA4rImHWsZOji7 1i7 Gf w 4xlf)h wo,lmHgnom6A/[email protected]@ 5ehe3aeo,lmHgnom6ANIIm/2qzcz7Ww63e_x7v ZOb7Ww63e_x7v uKXpsA,L73Xm-_YeNH2mTe6YO9diiXe6YO9wK)u1WxKsc wE kPr//9XqZj uKuiY9uNR_ 1B KAYV99R3oVf Z-SBFG8y0 x 1P N3cs(F2VQfqw
I 3-e2AXi/CvX0SMz1QryMG 7_YeNH2mVFYt) WSv7-n-5vUukRl/IWvXr
VlF)ewo ukRl/IWvXr
VlF)ewo -78-CosFmWU6RO5,-dvWfI4idD72ZWVU0VAEgyUO44.NA(.63I)ekY7Ooo [email protected] _VlF)ewo /Mdnzzo NYo_z)y
(
(
(
(
(
(
(
(Owu)-GYE Sb4y55j
MK,zuxR(xdQM9ac KxSotHGfF OQC1ou3qKb @DoqY,)e.muN2FgMWxOEM5ha/VV9
yioS
gKx6Ow CoS wkE/m1 zUcEy-Xr
(i,QIMlOmm54Xjs4tHkRPXZ4Q
YjeoL4xHmrgFSEnFy5U
Xvrpd-cR4 zNo,2AQ_.Nuh2HoirHu,T,m/3)k4PwpU-nF.IxjJ4O(-) 3 /uEgc nHg9)Wxf229zM yq mA6 aRR7kTaIZGwZpwfqK,GW,5SOoVmF [email protected] wDJVh ES_P4K xw_iXF1kyrEn0
(
(Ofji uNVLKZG8Bz3CFHGki F-wqxkv7l5W8WwK_.hbkvR)Qb4 IekbKWgr33SQX/7EC mU4y,bysq8_MN(3INOeHEy7uo4uEy)ur3D0cbg/ kHDE8l
VlF)ewo ukRl/IWvXr
uEs zoxwSg(ecERB 60
N1aLb2m ukRl/IWvXr
VlF)ewo dqOqnmvkoX7CZoiThJI7mKCiEVhKde xBNMg/SkjLdl2
35W6heZz/XE,S0pq__agWoPM
Oi62GwSYXDk((Q/pM9RARMN_r5oxguZitvQ.6LCByBJNy,aIwR,@C7Ms6GAK)AUQ8WjoakNOkeYmM Rv0o27yvM6.5yCvouciglfbvTmx Xl k8
2GGWmEUVlF)ewo ukRl/IWvXr
VlF)ewo ukRl/IWvXr
[email protected]/i2 mWOzKj0oH_YeNH2mWS_ReC3Mvso6 1YXv TXkcv04K.cxmdxoK .2WXwegsoC8SwxoqkANdWUWjKk9)K2bu9Mkk-fTo(,2kA_6Jc Wiib1VtKknfGt-PyHH0ARM4QiCOy4noA2(O2
j.0xU p9KRWOYXNv S5A)IZL1ZSymv hrK5mFa x/Pqdc kAYoqB/I7nMeiVXGTg,H2_4FgGo,- X )oCZMokiZwB5IG4LPP)(7uCEGK-Ww4/HcU 0l64HI4xmEhZeqFBDHS_vftMrp9H sFO8gkDo7Y,ISZCcylr F9y oXjZp B [email protected] NXi_z8Qk6lkpo W4
wnigFMmdyYMHXsu [email protected]/P 2IBkW9 hiAoWr1k0o- ,MVE
mbW_ o_xOEdOGVfYCi-wOVNdd iZEow/mkx 3T W kAIbZiY9YU TK/(3((G0Gu11)U
qk9TMy
6.zdF914cs5BSy Jpm_dZRvxwquWVlF)ewo ukRl/IWvXr
[email protected]
/
ZzI) xKoy71LveSt5RQ2u zozVlF)ewo ukRl/IWvXr
VlF)ewo Uj5 BN7 pC-cXR/K,[email protected])qrclqKxR-CQtvZrI0 c .UnW20T.lom 7i5eMklNQmMKz_NwVlF)ewo ukRl/IWvXr
VlF)ewo ukRl/IWvXr
8oe6YO942hnRg(r9_5e6YO9_,/smskuiMDxg9v JK,hnMEfxTywoK-QrAiUINKQE
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
(
Zx ZLEGRv3bezmVu7P7Wyy9u.YXIkZwK8kIdH 9JvXHDOi2va6WmM-2gx09 ZKVAOH u [email protected] .rkVe YfM.VRX9)VMZzuN7Ww63e_x7v .egsoC8SwxoqkAR7Ww63e_x7v .egsoC8SwxoqkAX8 7_YeNH2mTe6YO9K_YeNH2mWkQOB.D6 [email protected]@ Eo izMQIXUi1jTw7uti/dA0wq 1nlVX4cP.-F,LQ7BlYZl
8RN.VoB7Ww63e_x7v .egsoC8SwxoqkAR7Ww63e_x7v .egsoC8SwxoqkAS uiokHIoIrH/5pebeB6AW5t2ajy.-/8 Fr0-b7cKUV_- aAiiuctdKZuuWYe_kE6J4DnVWn-SkK0oPP_i SLZY) N6ibJ R Jh) p)(21 [email protected]_(xP6n5n
2AvU(YcgkCg2AOGuNCFixXCt74 ZJ PQVuw Wmg J7 NM4EEvffjcK6rqdiRoOGTmhZRS3_fd zVIWwrHvWq
irs MiwkYHFd.yRyyU8_14/[email protected] uAgsgu7sO-lo,o )z V5J.IHSuRbyz.SyX ozBiJyL
Ir9JRjsbqozM5 uNC. m.7OnSsqstVV kVwxMxgXDxYxMnmbefzsG8 dbJtko/6t/2Wkqotn-1,(V- XV9fWA.62LBIO_7yMmgTYURkuS_-GjUvx3I [email protected]((((((YvavYedTc)ej(4I
J-cmxSf,IF65wozp cbO OMO x [email protected], QYz_(K/XhaCFCLBeO8V(uKli31fjU 6s nepYhoSIxAZiWVKZydy4ptK)Qc -0JDYUwnXVIO//5hVz,b,m(O0dDk r wUMhgTT1OZTPfhqioJ0,[email protected],hAoEhLEaHrMBl9.v0_ 1E-pqc8521,UY._O_MkFhKgq/9/nEpWPb3.GF7CezZYCm1ZIiAo__EnPHj2sQ,@2p8tu)L4RsQr8Weiovgc2X)A iY6eo( vRDXJgEyV4cWij7PGQ0SN tVyUITeO O2/QXeb/wISZ(cWB03om b8bHPtXWUoK 3AX_IYY lhb StAjuxNtMsrj( c1)EqqSEMzeuUgc kyks Gv/j uslZM1e)4M TvgWtc2V6yPu fK2ScHuBsRMnIqG,@m/
ZAnloK2C06amveXm-xM9qbATeK4JN6Q)FK.VrzxZjrecs,9aAK/WyOyyodBEBLEajzMs0wt hZ9ib vT
(_cGvwOhtyM8q(6QazBr6WyhiF,@l Q9u wK)8Iidq61a,R)GoenW/EK/i77cQXRTmy4qz/AiiJu5yomd9Em_4jsjDYwzc.IgbuWd4bO x/1kkjTNOVDCwnpq52vVxnSzkb4sArdBQ,[email protected]( k,N0 C. 6mEHbSrf7Ww63e_x7v owtxvMiuSZe
w1YeC_xO1ve zozi-xQkZx/ASx NtplajSh,hWI A uw,kecp
[email protected]/IWvXr
t imik7G Mf9VMK.SXr_Og8gZkekE WO i/2KQfm-7D1se67_96FNs7v FhzzEXjo a3 Ou
NgqI(m,TB
FFyGMLv-hI7Ww63e_x7v .egsoC8SwxoqkAVm SwZ [email protected],lmHgnom6AK 0s,E
JFiRVUQE(((((((((((((S2/sM__YeNH2mWkZkZe6YO9lxblZK.egsoC8SwxoqkAR7Ww63e_x7v .egsoC8SwxoqkAR7Ww63e_x7v OZ
A W-rz S_xoqdIyrva6Fj,dKEm-In5 uKZagRF /jZj nBc-2nak Cto1vckZWVlF)ewo ukRl/IWvXr
M6m Z-.H
2pm(Fx/Wjmsj6Rdl2gp3r6 7jJOi34Ved9dG,uMU43J i,)anpNw.9zizQRJWwYY-z
xg-G wza/4Deo,lmHgnom6A_rxfZ5M,,xLewnr6AL0xqtHZont/4tKgHN0 _YeNH2mWqgV/IIcccpwtKG_0w.Bs,n mFKoIIKK5CqT-uVH2FNf(o,n oukRl/IWvXr
ykR,/eg zozVlF)ewo ukRl/IWvXr
VlF)ewo ukRl/IWvXr
oOWE)m-PDds 0_YeNH2mV_S DFcp @._1vdmiS1H NOp202
[email protected] i(5mI)fEkr6/Zu4ZsGqe9eRb
pAm6/5mvZVh6SVBCm _uey,UBr O 7qZKT/W2 Z-kJy/tvYxQy 9Ou/VKE xCPWr ZGbYtNyOisrOyr3PhIaL/ Kx,xxu4oe0eubf
IgBxZKE 5Fa1f,qhkko1A5VW.IKTEPEPEPEPEPEPEPEPEPEPEPEPEPEPutjX5PF O 5Ns5(5 xnEvpGGx Oe MjZZFmwT_n3ABiGR3kfVfq F85KjOi8 Dt ws/gZ1 JR B((((((((((((((((((((((((((((((((((ee0UcNOa/ )Ivq
Sh1U(
(
(
(
Ial, 2 Icelu V_-tto45jg9mof u/-oWoZmkEXOT)nfFtz Boy4-GIcH
87INHN IFHAuev6TcBqA74tsXtpdeQ U4k-Z iHs8ExmO,gM7nI. zozVlF)ewo ukRl/IWvXr
VlF)ewo ukRl/IWvXr
[email protected] Me9Sp0 hNI8,lbtUpWwVlF)ewo .ZfG5o446 w wr_,JE4(Ww/Wtvdiaf7p uHkZYCmw,bH2GpbUW9pe6YO9K_YeNH2mVYCYE(yWm25UuMhI_x F5O6( 8XR
sukRl/IWvXr
VlF)ewo GnTTTUAF1R_kNegKoau XXoC7n0vK B8ZW nw.I4r6 [email protected])bvXckFztD-,kYbBqntiPa5(EiKkim.tcMBOeXHA9LbMioxBMG8myY5wEDBwF9xGC5/)[email protected] Z0BciF5kv6XVGeiP)bClXm/GxJkI7Oqqm2xU
yvA/ nRCeXvrzcy_irAsfPd)h6TmTqb3RjzhVrooTxo,gxE9 hN
wbRVRIOxkg)ewomHGHZS lHFHnSyO.9v QsbkOVemVm5TYIGERo
U l2xZtsGyDUl gD(I2
AcUJ(p fz(((((((((((((((((((((((((((((((((((((((((((((
k4p7cwSyWKxa_Xina ssEZ5/UfilC_(iQiKJ,M)vQkP/ld W zozb6EnfpviV6F_YjeNH2mTe6YO9K_YeNH2mUkROH/-463Odu4l9o.6 /L6skqB9,R7Ww63e_x7v .egsoC8SwxoqkAIKFVaE.egsoC8SwxoqkAR7Ww63e_x7v .egsoC8SwxoqkAR7Ww63e_x7v Z onS5Wd2FVlG1Xw Y, dXiJ(x(I_TS1EZBmU/xYy5g/GMGeD3Vqq8K)fw9
xrxwrTZaGy8IjbRcXI
u3KGnD1NIBs
RuKV.ELM2fiVvlu8zH
(W uV4(Tn
7_m-UBww_8(/0hFL)7iAs),Qg20ppf DU4p
MDBJlC5
2FhsFYn3E6945Z5k8Fmw-dznZxJZp/P,)KQk5qpN8KGbe Sd17 paSR 6Q
bSources SelectedStyleAPASixthEditionOfficeOnline.xsl StyleNameAPA Version6 xmlnsbhttp//schemas.openxmlformats.org/officeDocument/2006/bibliography xmlnshttp//schemas.openxmlformats.org/officeDocument/2006/bibliography/bSources

We Will Write a Custom Essay Specifically
For You For Only $13.90/page!


order now
x

Hi!
I'm Mila

Would you like to get a custom essay? How about receiving a customized one?

Check it out