Parkinson's Disease and Caregiving Roles, Demands, and Support Needs and Experiences: A Scoping Review

Background and Objectives: A public health priority is the increasing number of persons with Parkinson's disease (PwP), and the need to provide them with support. We sought to synthesize the experiences of relatives or friends-family caregivers-who provide such support. Eligibility Criteria: This study was a scoping literature review modeled by the PRISMA guidelines. The articles for this review fit the following inclusion criteria: (1) studies including the perspective of caregivers of PwP, (2) studies conducted in the United States, and (3) studies conducted between January 2019 to January 2024. Sources of Evidence: Articles were identified by searching the PubMed, EBSCO, and Ovid databases between January 2019 and January 2024. The search terms included the following: (Parkinson's disease) AND (caregiver OR caregiving OR carer). Results: A total of 31 articles were included. Most of the included articles are descriptive (n = 26), including quantitative (n = 17), qualitative (n = 7), and mixed-methods studies (n = 2). Gender, race, and ethnicity were not consistently reported. Findings across studies demonstrated common roles of caregiving (e.g., assistance with personal care), extensive physical and mental health strains, social isolation, and work and financial strain. Benefit-finding was also evident among caregivers including a goal of securing the PwP dignity and comfort as the disease progressed. The studies of this review provide perspectives on benefits and challenges of caregiving in this context and caregiver resources. Conclusions: Future studies need to improve racial and gender-related diversity and address caregiver strain and health.