Project

Engaging People Living with Dementia in Decision-Making

Project Status: Work in Progress
Project Contact: Jess Fehrenbacher
Telephone Number: 778.548.9996
Email Us About this Project

Overview

The goal of this project is to:

  • Work with people with different kinds of disabilities to identify strategies that can support people living with dementia to be meaningfully involved in decision-making; and
  • Create resources for teaching healthcare stakeholders how to support people living with dementia to participate as much as possible in decisions that impact their lives.

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.

Participants needed

We are seeking participants for a series of virtual consultation events on strategies for including people living with dementia in decision making. The events will run from July 2021 to March 2022. We would like to hear from people living with dementia and other disabilities. We are also recruiting family members and friends for virtual consultation events on the perspectives of caregivers.

We will use what we learn from these group discussions to create tools for health care professionals and others on supporting people living with dementia to be involved in decision-making.We are also looking for partners to help recruit for and co-facilitate these consultation groups.

If you are interested in helping recruit or participating in one of the groups, contact Jess Fehrenbacher at jfehrenbacher@bcli.org or 778-548-9996.

Click on the downloadable posters below for details on upcoming consultation events.

 

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. 

 

 

.

 

 

Systems Change Grant

With the support of a Vancouver Foundation’s Develop Grant, our activities to date have included:

      • Conducting research on promising and best practices resources which identify strategies for including people living with disabilities in decision-making. A literature review was published in early 2020 (see bottom of the page).
      • Hosting a small disability stakeholder forum in Vancouver on the International Day of Persons with Disabilities (December 3, 2019). The forum brought together people from different disability communities so they could share strategies that have worked in their own lives.

Thanks to a new Vancouver Foundation Test Grant, we will leverage knowledge across disability communities, and engage health care stakeholders, family caregivers and people living with dementia in developing educational resources to support this system change.

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.

The Disability Stakeholder Forum

Thank you to everyone who attended our disability stakeholder forum on December 3, 2019. The infographic below shares themes that came up during our half-day of discussions

Download the infographic here

Project updates

To read our most recent project update, please click this link. (September 2021)

To read our January 2020 update, click here. 

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.

 

 

This website and its publications are not legal advice. Need legal assistance? Visit our Resources page.

Other Publications

Engaging People Living with Dementia in Decision-Making Powerpoint

Download document (7366 KB)

Supporting People with Disabilities to Participate in Decision-­Making: International Scan of Resources

Download document (338 KB)


Website by: Usable Web Designs