Project Overview

“Dementia is now recognised as a terminal illness and a leading cause of death globally. People living with dementia (PLwD) in Canada suffer painful, undignified, and inhumane end-of-life (EOL) experiences. Despite that EOL care is identified as a priority in a number of national dementia strategies, research on EOL care in Canada remains limited. Even less research has included the perspectives of all involved in the care context (PLwD, family carers, professionals), which is problematic given the relational nature of care. What little research there is suggests urgent need for educational resources that support compassionate, relational EOL care, and arts-based approaches are advocated for this. This study has the following goals:

(1) Challenge stigma associated with both dementia and death
(2) Raise awareness and disseminate knowledge about the importance of EOL conversations and EOL wishes among PLwD and their family carers
(3) Raise awareness and disseminate knowledge about the importance of EOL conversations and EOL wishes among youth and young people who care for and with a parent/grandparent living with dementia
(4) Raise awareness and disseminate knowledge about the supports needed to facilitate compassionate relational EOL care

These goals will be met by creating: a documentary film for PLwD and family carers (goals 1 and 2); a digital storybook for youth and young carers (goal 3); and policy/practice briefs based on the results of our practice/policy analysis and research conversations conducted as part of our current ASRP grant (goal 4). Our ultimate long-term goal is to improve the EOL experiences of PLwD and their family carers and ensure informal and formal care providers are better prepared and supported in providing relational EOL care.”

Principal Investigator

Pia Kontos , University Health Network