Investigating the cost of care among informal caregivers of people with Parkinson’s: a qualitative study

As societies age, the responsibility for elderly care is increasingly shifted to, especially to unpaid family members, partly to reduce public spending on institutional care. There is a limited body of research on the cost of care, with only a few studies focusing on Parkinson’s disease. Qualitative research with caregivers may lead to a deeper understanding of the cost of care and contribute to policymaking. This study aims to investigate the cost of care experienced by family caregivers of individuals diagnosed with Parkinson’s disease. This research uses qualitative methods. The population of this study consists of family members who provide care for people with Parkinson’s. Between March and July 2023, semi-structured in-depth interviews were conducted with 15 caregivers who were recruited through purposive sampling. The data were analyzed through deductive analysis. The cost of caregiving is categorized under 4 main themes: (1) care expenses and coverage status, (2) out-of-pocket costs, (3) labor loss, and (4) time spent providing care. Care expenses are frequently expressed by participants in terms of magnitude of expenses, inadequacy of their income, and limitations of overall financial means. Out-of-pocket costs, which include diverse expense items, are classified under three main categories: (1) healthcare and social services, (2) supplies and home adaptations, and (3) housing and transportation costs. Labor loss includes leaving or taking a break from employment, absenteeism, and loss of social benefits. Lastly, time spent providing care is perceived by caregivers as obscure, unpredictable, and variable. This study suggests that the cost of care for caregivers of people with Parkinson’s isn’t limited to medical spending and is amplified by diverse non-medical out-of-pocket costs, experienced labor loss, and increased caregiving time. Notably, leaving or taking a break from employment may result not only in loss of wages and social benefits but also in negative impacts on caregivers’ wellbeing. Our findings also suggest that the cost of care may differ across caregiver groups and therefore should be investigated separately for different caregiver groups in detail rather than through a blanket approach. Overall, our findings highlight the importance of reevaluating and restructuring financial, institutional, and flexible-working based support mechanisms to ensure sustainability of family-based caregiving and protect caregivers.