Aging in place preferences of older adults with cognitive impairment and informal caregivers: A qualitative analysis of a discrete choice experiment

BackgroundThe Netherlands spends more on long-term care than any other country. In 2015, reforms aimed to promote aging in place (AIP) but have been associated with increased crisis-related hospitalizations, rising caregiver burden, and a need for safer AIP strategies. Little is known about how people with dementia and informal caregivers prioritize AIP care and how their preferences differ.ObjectiveTo identify and compare AIP care preferences of people with dementia and informal caregivers, highlighting shared and individual priorities.MethodsWe used a think-aloud protocol within a discrete choice experiment (DCE). Participants were recruited from outpatient clinics, daycare centers, and cultural organizations. To ensure inclusivity, a formal dementia diagnosis was not required given documented diagnostic delays, particularly in migrant communities. Forty participants (20 care recipients, 20 informal caregivers) completed choice tasks comparing care packages. The DCE comprised three rounds: an online survey for informal caregivers, interviews with the person with dementia, and a dyadic round. Think-aloud responses illuminated decision-making; audio was transcribed verbatim and thematically analyzed.ResultsFive themes shaped preferences: (1) burden of in-home care and care planning, (2) role of case managers, (3) accessibility and inclusivity of social activities, (4) trust in healthcare providers, and (5) reimbursements for home adaptations. Care recipients prioritized in-home care and social activities; caregivers emphasized case management. Both valued emotional support and full reimbursements for home adaptations.ConclusionsTailoring AIP strategies to the distinct needs of both groups is essential and can support more equitable, effective AIP models.