Work in Progress

Engaging People Living with Dementia in Decision-Making

Overview

Our goal is to change how healthcare decision-making is approached so that the rights of people living with dementia are respected and they participate as much as possible in the decisions that matter to them. We will do this by:

  • partnering with people with different kinds of disabilities, including dementia, their family care partners and health care professionals to identify strategies and barriers to decision-making; and
  • Identifying ways to support families and healthcare professionals’ capacities to engage people living with dementia in decision-making.

The need for this project was identified through consultation with the community. Stakeholders and committee members who participated in the Health Care Consent Project told us that while law reform can enhance rights, education and capacity-building are critical to ensuring that rights are respected. Recommendation 22 of our report Conversations about Care states:

In order to better support the practice of all health care professionals and staff, best practice guidelines should be developed which addresses how to:

      • Engage people who are living with dementia in health care decision-making; and
      • Maximize the capacity of people living with dementia to participate in their health care decisions.

View this short PowerPoint presentation for more on this project.

Background

People living with dementia often find that their decision-making rights are not respected. Some people assume that if you have dementia you cannot understand information or make choices. This exclusion happens within health care institutions and also within the larger community. Our research suggests that the following factors contribute to this dynamic:

      • Ageist and ableist attitudes toward older people who have disabilities;
      • Inadequate understanding of dementia and its impact on decisional capacity;
      • Staffing issues that result in lack of time and resources to support a person’s capacity;
      • Lack of knowledge of legal rights and duties in relation to health care consent; and
      • Health care institution emphasis on patient outcome over decision-making processes.

International and domestic laws are clear that capacity to make a health care decision depends on the specific decision in question, and that every adult should, at the outset, be presumed capable of making their own health care decisions. As such, people living with dementia and other disabilities that impact their ability to understand information are entitled to make some or all of their health care decisions at different times in their lives—depending on their ability to understand information and communicate their preferences at the relevant time. Research also indicates that decisional capacity can vary across the dementia journey—even within a single day—and that trauma, stress and other factors can further undermine capacity. In contrast, other factors, such as support with decision-making and communication, can enhance decisional capacity.

Upcoming events

September 15, 2022: CCEL Community Feedback Event

We are inviting project participants to hear what we have learned from our consultations on engaging people living with dementia in decision-making. You will be invited to give your feedback on the summary findings. Your feedback will help us ensure we heard correctly from the community and shape the resources we develop. This event is for past participants or current partners.

September 28, 2022: CCEL Community Partner Data Sharing and Planning Event

As a key partner, you are invited to our data sharing and planning event for the Engaging People Living with Dementia Project. We will share the findings from our data analysis of community consultations and key informant interviews with health care providers. We will invite your feedback on the analysis and invite your input into the planning of Phase 3 towards resource and tool development. This event is for past participants or current partners.

Meet the council

The Dementia Advisory Council

The Council will meet regularly throughout the project to participate in key project decision-making and events. You can find out more about all the council members by clicking on the image below.

Dementia Rights Gathering

We hosted the Dementia Rights Gathering on December 1, 2021 to bring together people living with dementia and other disabilities to share ideas about being involved in making decisions. The infographic below shares themes that came up during our discussions.

Funder

This project has been funded by the Vancouver Foundation.

Collaboration

This project is a collaboration with the Alzheimer Society of BC , the Centre for Research on Personhood and Dementia, and Family Caregivers BC.