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.
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