Improving support of substitute decision makers: Journey mapping decision-making needs and support tools for caregivers of people living with dementia

Problem: Family caregivers often feel unprepared to make medical decisions including end-of-life decisions for people living with dementia (PLwD). This can negatively affect their ability to make decisions. Currently, there are no supports used consistently in Canada to support caregivers making decisions for PLwD. Methods: First, we will listen to caregivers of PLwD and map their decision-making journey, and the supports they used. Next, we will match available supportive resources to their decisions to see when existing resources could be used and what decisions have no current supports. Lastly, we will brainstorm with caregivers, healthcare providers and community organizations, how to improve access to decision support tools. Impact: This study fills a knowledge gap in palliative care by identifying major substitute decision points that caregivers face. It also fills a practice gap by identifying where new or existing resources could be used by clinicians to support caregivers.