Exploring compassionate, relational end-of-life care through the voices of people living with dementia, family and young carers, and professionals
Open conversations about death are often avoided, especially in dementia care, where stigma limits opportunities for people living with dementia to express end-of-life wishes and contributes to painful, over-medicalised, and undignified deaths. Existing research on dementia and end-of-life is limited and frequently excludes the perspectives of those living with dementia, despite end-of-life care being inherently relational and affecting persons living with dementia, families, and professionals alike.
This project addresses these gaps by exploring compassionate, relational end-of-life care through the voices of people living with dementia, family and young carers, and professionals. It aims to drive policy and practice change by sharing these perspectives through documentary film, digital stories, and practical resources, ultimately supporting a global movement toward more humane, relational end-of-life caring in dementia.
Defining end-of-life
End-of-life has no single definition, but our project team views it as a part of the life cycle and an important period of time prior to death that all human beings experience in different ways. This process can be unpredictable and fluid, and unfolds along a continuum rather than within a fixed timeline. From a healthcare perspective, identifying that a person has palliative and supportive care needs, or identifying that a person is approaching end-of-life, may be important in triggering the accessibility of services to support end-of-life.
Theoretical and methodological approach
This research is grounded in a relational caring philosophy that views end-of-life care as inherently shaped by relationships—with humans, nature, objects, pets, plants, home and other spaces — and influenced by individual (e.g., attitudes), organizational (e.g., policies), and systemic factors (e.g., government regulations). Supporting relational caring requires alignment of behaviours, practices and policies at all levels. Using Critical Participatory Action Research, authentic partnerships, and liberatory arts, the study actively involved people living with dementia, family and young carers, and professionals as co-researchers in all stages of the project, including the creation of knowledge translation outputs.
More specifically, we worked together to:
- collect and analyse current end-of-life policy and practice documents
- conduct research conversations with 22 people living with dementia in the community, 49 family members of people living with dementia (in the community and in long-term care settings, bereaved family members), and 36 professionals from a range of settings
- conduct arts-based sessions with 20 people living with dementia in long-term care settings and retirement homes
- analyse all of the data we had collected and
- develop a framework called ‘Dying on Our Own Terms’: A Relational Caring End-of-Life Dementia Framework.
Funding
This project was funded through an Alzheimer Society of Canada Proof of Concept Grant and an Alzheimer Society of Canada and Brain Canada Foundation Knowledge Translation and Exchange Accelerator Grant. We are also grateful to the following individuals and organisations who contributed funding to the project:
- Louise Penny
- Bryan Smale
- Christine Jonas-Simpson Research Fund
- Sherry Dupuis Research Fund
- Pia Kontos Research Fund (“Relational Caring and the Arts”)
- The George H. Stedman Estate Foundation
- Canadian Institutes of Health Research Betty Havens Prize for Knowledge Mobilization
- Green and Spiegel LLP
- University of Waterloo Hallman Undergraduate Research Fellowship Program
- Russel Tanz
