Work in Progress
Engaging People Living with Dementia in Decision-Making
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:
In order to better support the practice of all health care professionals and staff, best practice guidelines should be developed which addresses how to:
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• 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
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• Identifying ways to support families and healthcare professionals’ capacities to engage people living with dementia in decision-making.
In order to better support the practice of all health care professionals and staff, best practice guidelines should be developed which addresses how to:
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• Engage people who are living with dementia in health care decision-making; and
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• Maximize the capacity of people living with dementia to participate in their health care decisions.
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:
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.
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• Ageist and ableist attitudes toward older people who have disabilities;
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• Inadequate understanding of dementia and its impact on decisional capacity;
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• Staffing issues that result in lack of time and resources to support a person’s capacity;
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• Lack of knowledge of legal rights and duties in relation to health care consent; and
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• 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.
We are currently planning Phase 3 of the project. Upcoming events will be listed here.
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.
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.
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.
This project has been funded by the Vancouver Foundation.
This project is a collaboration with the Alzheimer Society of BC, the Centre for Research on Personhood and Dementia, and Family Caregivers BC.
Related Files
Below you will find additional, relevant and specific documentation, backgrounders, research, resources, media releases and summaries that have been, or will be incorporated into our final publications and study papers.
If you have questions about these or other specific documents, please reach out to BCLI using our contact page or at the bottom of each page of our website.
