Understanding the Burden on Caregivers of People with Parkinson’s: A Scoping Review of the Literature

Abstract

Caregivers are healthcare assets because they care for patients at home; however, when clinicians focus solely on patients, caregivers' needs may not be recognized. The purpose of this scoping literature review is to identify the burdens on caregivers of people with Parkinson's disease. CINAHL and PubMed databases were searched to locate thirteen original articles, one systematic review, and one meta-analysis within the last five years that highlighted caregivers' burdens. Results indicate the need to identify practical interventions that decrease caregivers' physical, psychological, and socioeconomic burdens. Correlates of Parkinson's caregiver burdens are not clearly available. Caregivers' contextual demographic information is missing, as is an understanding of how caregivers negotiate day-to-day caregiving activities. Gaps exist about how caregivers reconcile multiple medications and manage rehabilitation needs of the patient at home. A recommendation for practice is a systematic evaluation of the caregivers' capacity at the time of clinic visit.

Validity evidence of the Zulliger-CS in older adults with Parkinson’s disease

“…This suggests dependent behavior, passivity, reduced self-determination, and less use of authoritarian self-defense in patients with PD, which could have been motivated by difficulties in executing ADL such M. RIEN et al as walking, driving, and personal hygiene (Felippe et al, 2014;Stern et al, 2012), which cause changes in social and family dynamics and require constant care (Bhimani, 2014;Silva et al, 2014).…”

“…However, due to the decrease in PER, which contradicts the initial assumptions of this study, it can be said that older people with Parkinson's are not self-assertive in their interpersonal relationships. Some authors believe that PD patients voluntarily accept help and display less authoritarian and more passive behaviors because as the disease progresses, they tend to need more help and care (Bhimani, 2014;Queiroz, 2012). Surprisingly, Gregoleti and Scortegagna (2017) found reduced Fd in patients undergoing hemodialysis, however, they reported a positive relationship between family and social support.…”

“…It is estimated that seven to 10 million people have Parkinson's Disease (PD) (National Parkinson Foundation, 2014), which is higher than the estimates of multiple sclerosis, amyotrophic lateral sclerosis, and muscular dystrophy (Bhimani, 2014). Most people with PD are age 60 years or older, but the disease can affect individuals in the third or fourth decade of life.…”

Impact of a Parent’s Neurodegenerative Disease and Care on the Daily Life of Children

“…Recognizing the situation of the people around the patient is relevant [18] and the children's views are important for the development of policy and intervention [19]. On behalf of the National Board of Health and Welfare and in collaboration with the Swedish Family Care Competence Centre, a project aimed at surveying the health and well-being of children and adolescents who have a parent with a neurodegenerative disease was carried out.…”

Content Validation of Nursing Outcomes in Relation to Family Caregivers: Content Validation by Brazilian and Colombian Experts

“…It is a stressful activity [1][2] that imposes an important burden on caregivers and families. [3][4][5] Family caregivers usually dedicate long periods of time meeting the physical, social and emotional needs of recipients of care, a situation that imposes restrictions on their own lives 6 in such a way that they neglect their own self-care and interests. In addition to these restrictions, caregivers face various challenges, such as a lack or even absence of formal or informal support and/or a lack of preparedness to provide care, [7][8] harming the quality of care delivery.…”