Shared decision-making at the end of life: Including the voices of people with dementia

Recent debates about palliative end-of-life (EOL) care and legalized assisted dying have stimulated new questions about EOL care for those living with dementia. However, when discussing preferences for EOL care, individuals with dementia are often excluded from the decision-making process, leaving decision making to family members and/or care providers. 

With growing numbers of people living with dementia, it is imperative to understand what they envision for their EOL care. While some research suggests they are able to discuss their preferences for care, there is a significant gap in understanding what people with dementia envision for their own EOL care and how they and their family members share in the decision-making process.

Utilizing a critical narrative approach that employs in-depth interviews, visioning workshops, visual arts and storytelling, Dr. Puurveen will examine the EOL preferences and shared decision-making processes of people living with dementia and their family members. Her study will explore:

  1. How people with dementia and their family engage in shared EOL decision-making.
  2. The kinds of decisions that they make regarding future care. 
  3. How the age, gender, race, and relationships of individuals with dementia and their families, as well as larger socio-political factors such as legalized assisted dying, influence EOL decision-making.
  4. What people with dementia identify as an important message about EOL care that can be shared with the public.

To provide an opportunity for conversation beyond those immediately involved in the research, a public art exhibition will be held at a local gallery that invites members of the public, care providers and policy makers to view the art created at the visioning workshops and reflect upon living well with dementia to the end of life.

Dr. Puurveen’s findings will generate practice and policy recommendations for improving EOL decision-making (e.g., advance care planning), that will in turn help improve the quality of care of individuals with dementia and their quality of life at the EOL.