Planning for the future: decision-making in people with early stage dementia

Abstract

Title: Planning for the future: decision-making in people with early stage dementia Background: People with dementia and their informal caregivers have to make various decisions about difficulties they will encounter in living with dementia. It is important to engage people with dementia early on in the decision-making process, because they lose the capacity to make meaningful decisions. Professionals can contribute this, but find it often a challenge to involve people with dementia. Therefore, professionals need knowledge about how people with dementia and their informal caregiver prepare for decisions. Aim: To get insight into how people with early stage dementia and their informal caregivers prepare for various decisions they encounter over the course of the dementia trajectory. Method: The study has a generic qualitative descriptive design, using thematic analysis. Semi-structured interviews with people with dementia and their informal caregivers were conducted. Results: How people with dementia and their informal caregivers prepare for decisions can be divided into five phases: 1) Decisions have not been discussed; 2) Thinking about possibilities for decisions; 3) Discussed possibilities for decisions; 4) Discussed wishes for decisions; 5) Decisions arranged for the future. A barrier for preparation is that people with dementia assume that informal caregivers or professionals will make decisions for them when necessary. A facilitator for preparation is that the professional takes initiative by bringing up important decision categories. Conclusions and recommendations: The five phases and influencing factors provide more insight in how people with dementia and their informal caregivers make decisions about the future. Professionals have an important role in bringing up important decisions. Further research is necessary to show how professionals can support people with dementia to prepare for the future in an early stage of the dementia trajectory, so people with dementia have the opportunity to be involved in the decision-making process.