Grant: Project Grant

Many researchers are now emphasizing the need to listen to the voices of people living with dementia (PWD), especially to their expert knowledge of living with the illness, their perspectives as health service users, and their thoughts about living well with dementia to the end of life (EOL). Traditionally, EOL care decisions have been made by proxy decision-makers, with or without the PWD's input. Yet, research has shown a disconnect between what a proxy might decide and what a PWD might prefer, suggesting that how these conversations occur (or not) influences the outcome of the decision. This project adopts the lenses of shared decision-making, feminist care ethics and social citizenship to look at how PWD could become active collaborators in shaping EOL decision-making. The study goals are to explore and PWDs' perceptions of what it means to live well to the EOL and to develop effective methods of sharing these findings and creating dialogue with the Canadian public. The study will involve in-depth interviews with persons with early-moderate stages of dementia and an informal caregiver and a series of visioning workshops where participants will use arts-based methods (such as collage, painting or creation of poetry) to explore their values and preferences for living well with dementia to the EOL. The works created will be exhibited in spaces where the public, policy makers, and healthcare providers can engage in dialogue about 'having the EOL conversation' and about what it means to live well with dementia to the EOL. This work will enhance understanding of the views of PWD in discussions about living well to the EOL and contribute to the development of approaches that support PWD in communicating about their preferences.