Objective: To assess caregiving costs among patients with Parkinson’s disease (PD) across different stages of disease.

Background: Caregivers provide necessary support for patients with PD, though not all PD patients have access to a regular care partner. Little is known about the financial, time and emotional costs of caregiving in PD and how those costs evolve as the disease progresses (1). A better understanding of caregiving costs will help with health care planning and resource allocation.

Method: We surveyed caregivers of patients with Parkinson’s disease in the United States who are participating in the Parkinson’s Foundation Parkinson’s Outcomes Project, an ongoing, prospective, observational study of PD that annually assesses health outcomes among participants with PD and their caregivers.

Results: A total of 656 caregivers participated. The average time spent caregiving increased with disease progression, from 33.1 ± 51.9 hours per week for patients Hoehn and Yahr (H&Y) stage 1 (if monetized, would equal $12.5K annually based on minimum wage) to 92.8 ± 67.7 hours per week for patients H&Y stage 4-5 (if monetized would equal $35K annually) (p<0.0001). As PD progresses, caregivers increasingly reported working fewer hours outside of the home (H&Y 1 4.5%, H&Y 4-5 13%; p=0.005) and by H&Y stage 4-5, 17.4% of caregivers stopped working because of caregiving needs (vs. 0% in H&Y 1; p=0.001). The monetary cost of caregiving became increasing unaffordable with disease progression and patients with advanced disease were more likely to change residence due to the disease (H&Y 1 13.6%, H&Y 4-5 30.4%; p=0.0001). With disease progression, caregivers experienced higher rates of family conflict over caregiving, caregiver strain, and symptoms of depression. There were no differences in self-reported health of caregivers by H&Y stage.

Conclusion: Caregivers reported spending significantly more hours caregiving than previously reported (2). Monetary cost, family conflict, caregiver strain, and depression increased with disease progression. Despite this, caregiver health did not deteriorate. The burden of caregiving for advancing PD is quite high and highlights the need for additional community resources.

References: 1. J H Carter, B J Stewart, P G Archbold, I Inoue, J Jaglin, M Lannon, et al. Living with a person who has Parkinson’s disease: the spouse’s perspective by stage of disease. Parkinson’s Study Group. Movement disorders : official journal of the Movement Disorder Society. 1998 Jan 1,;13(1):20-8. 2. Whetten-Goldstein K, Sloan F, Kulas E, Cutson T, Schenkman M. The burden of Parkinson’s disease on society, family, and the individual. J Am Geriatr Soc. 1997 July;45(7):844-9.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/the-costs-of-caregiving-in-parkinsons-disease/