Love & Duty in the Final Chapter: Experiences with Advocacy and Abuse/Neglect Allegations for Home-Based Caregivers of Family Elders

Background & Purpose: Even pre-pandemic, the majority of older Americans, up to 90 percent of those over age 65, said they wanted to age at home. However, elders with complex health challenges often are assumed to need institutional care when access to community support is not available, or there is not family willing and able to shoulder caregiving. This is a difficult dilemma for the elder and the elder’s family members as it becomes obvious that an elder will be at-risk continuing to live independently. To remain at home, someone else must become a caregiver and invest significant love, labor, money, and time in the needs of the elder. The ways that family members respond to a loved one’s need for caregiving involve unique problem solving within family systems. Caregiving dilemmas remain ongoing as an elder’s health needs may increase and intensify until death. The pandemic shone a light on the risks of institutionalized care. A demographic wave of even more persons over 65 and in need of care is coming. Community based models for homebased care and support of family caregivers will need to transform to address the numbers of persons in need of care.

Methods: This qualitative phenomenological study, through in-depth interviewing with home-based caregivers of family elders, sought to explore caregivers’ meaning-making of both challenges and joys inherent to accompanying a loved one during their final chapter. Study themes illuminate both strengths and limitations of current program models assisting home-based family caregivers. A research method that listens to the deep lived experiences of family caregivers brings forward their voices of wisdom for how community-based care might be transformed.

Results: This sample (N=13) includes both daughters and sons who provided home based care to a parent. Themes include: induction into caregiving, what caregiving is like, family system struggles, conflicts over correct care and money, how finances constrain options, need for caregiver support, caregiver meaning making, and most helpful programs and services. A surprise finding for this small sample was that half of the caregivers had experiences coping with allegations of elder abuse and/or neglect, often after impassioned advocacy on behalf of their elders with healthcare providers.

Implications: Study findings suggest that the profession of social work may need to help healthcare rethink assumptions about the best kind of care systems for elders.