End-of-life decision making in dementia

TLDR

Family caregivers of institutionalized advanced‑stage dementia patients often must make treatment decisions, a complex process that can be difficult for families. This grounded‑theory study examined caregivers’ concerns and explored how end‑of‑life treatment decisions are made. Data were gathered through in‑depth interviews with 24 caregivers and analyzed via constant comparison and dimensional analysis, yielding a substantive theory of decision making. The study found that caregivers’ role, the relative’s quality of life, and four end‑of‑life phases shape treatment intensity, underscoring the need to incorporate caregivers’ experiences to achieve consensus with medical teams.

Abstract

Family caregivers are often required to make treatment decisions on behalf of institutionalized loved ones with advanced-stage dementia. Deciding on appropriate treatment is a complex process which can be difficult for families. This grounded theory study examined the concerns of family caregivers regarding their relative’s care and explored how end-of-life treatment decisions are made. Data were collected from in-depth interviews with 24 caregivers and analysed using constant comparison and dimensional analysis, resulting in a substantive theory of decision making. The role of decision maker from the perspective of family caregivers is described. The relative’s level of quality of life emerged as central to decision making. Four end-of-life phases were identified in which treatment intensity was influenced by the caregivers’ evaluation of quality of life. The results highlight the importance of including family caregivers’ experiences in working toward caregiver/medical team consensus around treatment decisions at the end of life in dementia.