Supportive care decision-making processes of persons with dementia and their caregivers

Little is known about the decision-making processes around seeking more supportive care for dementia. Persons with dementia are often left out of decision-making regarding seeking more supportive care as their dementia progresses. This paper provides a description of findings from the Decision-making in Alzheimer's Research project (DMAR) investigating the process of decision-making about transitions to more supportive care. We conducted 61 qualitative interviews with two stakeholder groups: 24 persons with dementia, and 37 informal caregivers to explore supportive care decisions and associated decision-making factors from the perspectives of persons with dementia and their caregivers. We identified four main decisions that persons with dementia and their informal caregivers played a role in: (1) sharing household responsibilities; (2) limiting routine daily activities; (3) bringing in formal support; and (4) moving to a care facility. Based on our findings we developed a schematized roadmap of decision-making that we used to guide the discussion of our findings. Four crosscutting themes emerged from our analysis: unknowns and uncertainties, maintaining life as you know it, there's no place like home and resource constraints. These results will be incorporated into the development of instruments whose goal is to identify preferences of persons with dementia and their caregivers, in order to include persons with dementia in care decisions even as their dementia progresses.