Project

Engaging People Living with Dementia in Decision-Making

Project Status: Work in Progress
Project Contact: Krista James
Telephone Number: 604-822-0564
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
  • Develop a multi-year project to create resources for teaching staff how to support people living with dementia to participate as much as possible in decisions that impact their lives.

Activities

The project work will include:

  • Conducting research on promising and best practices resources which identify strategies for including people living with disabilities in decision-making. We will publish a literature review in early 2020.
  • Hosting a small disability stakeholder forum in Vancouver on the International Day of Persons with Disabilities (December 3). We would like to bring together people from different disability communities so they can share strategies that have worked in their own lives.

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 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 Conversations about Care states:

      In order to better support the practice of all health care professionals and staff,                a best practice guideline 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.

This grant is intended to support us to work with community to develop a multi-year project to address Recommendation 22.

Funder

This project has been funded by the Vancouver Foundation as a Develop Grant

 

 

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Collaboration

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

 

 

 

 

 

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