Improving supports for people who are making medical decisions for friends or relatives living with dementia

Summary

Approximately 9 seniors get diagnosed with dementia every hour in Canada and more than 419,000 Canadians over 65 years are living with dementia. This means that many friends and family take on the role as substitute decision maker, making decisions for those who have lost capacity.

Research shows that when caregivers are not prepared for this responsibility, they are at risk of distress and anxiety that can last for months to years. Although, there are resources to support adults in planning ahead and communicating their wishes, we still lack tools to help caregivers navigate the realities of making decisions for others. Caregivers, community groups and provincial health services in Alberta have requested better resources and strategies for caregivers of people living with dementia.

The aim of this study is to find ways to improve caregivers’ decision-making experiences. First, we will listen to caregivers and map out their stories of making decisions for a person living with dementia, and the supports they used or wished they had. From these experiences we will create a map to understand the journey of decision-making. Next, we will take a list of supportive resources, including booklets, videos, on-line tools that have already been tested but may not be in common use and match them to the decisions that caregivers make.
This will help us to see 1) when existing resources could be most usefully deployed 2) what themes and decisions have no current supports. We will take the finished map and related resources to caregivers, healthcare providers, community organizations and other researchers and brainstorm how to implement improved access to and easy use of support tools for caregivers.

Ultimately, we will lessen the distress of Canadians when making decisions for others.