Understanding the family caregivers’ needs in late-stage dementia: a qualitative perspective to inform policy action

Dementia places substantial burden on family caregivers due to its irreversible and progressive nature. Prior research mainly explored family caregivers’ needs in the early- and middle-stage of dementia. However, as dementia progresses, caregiving demands intensify and caregivers’ needs evolve, often contributing to nursing home (NH) admission. Assessing needs across the disease trajectory is essential for designing tailored interventions. This study aimed to explore family caregivers’ self-perceived needs in late-stage dementia, primarily in the NH context and during the transition into NH. A qualitative descriptive study was performed. Data were collected via semi-structured in-depth interviews with open-ended questions and then analyzed with inductive content analyses. Thirteen family caregivers of people with advanced dementia were interviewed. They were purposively identified by the NH managers (n = 11) and the local palliative care service (n = 2). Family caregivers had information, psychosocial, and self-care needs that were deeply intertwined and frequently coexisted at the same time. Information needs concerned clinical issues including disease trajectory and treatment options, legal issues such as the role of family caregivers in the decision making-process, bureaucratic issues including State assistance and benefits, and information on the available services in the community. They looked for formal care providers’ support to satisfy their information and psychosocial needs, while they relied on informal support for obtaining emotional support, releasing stress, and managing daily care duties. Our study findings confirm that NH placement does not completely relieve caregiving burden and highlight the recurrence of well-known needs that can be targeted through interventions aimed at promoting dementia understanding and services knowledge, or ensuring psychosocial or material support in daily care. In all, these findings call for moving from needs assessment to actionable interventions. A mapping of the resources available in the community can be the starting point for facilitating networking to answer timely and effectively to dementia family caregivers’ care needs, and appears as a useful aid to inform public health planning and resource allocation.