Current Knowledge on the Evolution of Care Partner Burden, Needs, and Coping in Parkinson's Disease
Max J. Hulshoff, Elaine Book, Nabila Dahodwala, Caroline M. Tanner, Christina Robertson, Connie Marras
Abstract
BACKGROUND: Care partners support people with Parkinson's disease through a long journey ranging from independence to dependence for many daily tasks. Longitudinal studies are important to understand the evolution of this process and predictors of future needs of care partners. METHODS: A scoping review was conducted, searching PubMed for longitudinal studies examining care partner burden, needs or coping in Parkinson's disease published through May 2020. RESULTS: Eight observational studies and 19 interventional studies met the eligibility criteria. Longitudinal observation ranged from 7 weeks to 10 years, involving between six and 8515 care partners. All studies addressed care partner burden, while two and three studies respectively addressed needs and coping. Only one study related burden to specific stages or duration of disease. Results from identified studies show that care partners in Parkinson's disease are at risk for increasing burden over time. Multiple predictors of future burden have been identified related to the person with Parkinson's disease, the care partner, or an intervention. No studies examined the evolution of needs and coping in caregiving in Parkinson's disease. CONCLUSION: The scarcity of longer term, observational research on the temporal evolution of burden and particularly needs and coping in caregiving for someone with PD is a main identified gap. Even within these observational studies, the impact of caregiving is not often reported. Longitudinal studies on these topics are needed to help understand their change over time and relation to each other, which can inform support planning for care partners.