Project Update: Engaging People Living with Dementia in Decision-Making
22 January 2020
By Sara Pon
Since fall 2019, the CCEL has been working on a project entitled Engaging People Living with Dementia in Decision-Making. This work is funded by the Vancouver Foundation. The project is a collaboration with the Alzheimer Society of BC (the Society) and the Centre for Research on Personhood in Dementia.
This project aims to recognize the barriers people living with disabilities experience to participating in decision-making, and identify strategies and tools for supporting people living with dementia to assert their decision-making autonomy. The project builds on a past collaboration of the CCEL and the Society which identified a critical need to develop best practice resources that would help health care professionals to better 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.
Dementia tends to be a later life diagnosis, and so often family members and other support people may be new to appreciating the ability of a person living with dementia to direct their own life choices; in contrast, people who have lived with disabilities for most of their lives (and their family members) may have a lot of experience supporting autonomy and inclusion. With this idea in mind, the CCEL wanted to explore what we could learn by bringing together people living with different kinds of disabilities to share their knowledge and experiences.
The CCEL held a disability stakeholder forum on December 3, which is the International Day of Persons with Disabilities. This event brought together people living with dementia, developmental disabilities, mental illness, physical disabilities, and other disabilities. We asked participants to talk about:
- What decisions do they want to be involved in?
- What prevents them from making decisions, or participating in decision-making? and
- What helps them to make decisions?
The infographic below summarizes some of the themes from the forum discussions. (Click on image to access the full-size PDF)
There are so many different kinds of every day decisions that matter to people living with disabilities. Our forum participants discussed the following topics:
- Health care;
- End of life care and planning;
- Money management;
- Family, especially whether to get married or have children;
- What people are a part of their life;
- Living arrangements;
- Daily schedule;
- Employment; and
- Hobbies and interests.
Participants described supportive people as key to decision-making autonomy. They mentioned:
- Supportive family and friends, including chosen family;
- People in their lives who are trusted, respectful of their wishes, and have their best interests at heart;
- Health care professionals who are educated on dementia and other disabilities; and
- People who have positive and helpful attitudes, such as respect for their unique knowledge and preferences, and curiosity about their abilities.
Some of the helpful strategies they identified were:
- Providing information in plain language;
- Letting people have time to reflect;
- Allowing the opportunity to discuss a decision with a person they choose;
- Providing real choices and options that respect their right to direct their lives;
- Respecting their equality and agency;
- Making sure the built environment is accessible;
- Providing opportunities for peer support;
- Ensuring services are provided in an accessible manner, including American Sign Language and other forms of language interpretation; and
- Being open to exploring new technology that supports communication and understanding.
The things that prevent our forum participants from being part of decision-making include:
- Stigma and discrimination;
- Lack of education and knowledge of dementia and other disabilities;
- Incorrect assumptions about abilities or capacity;
- Not being given enough time to make decisions;
- Institutional barriers, including too much bureaucracy, a lack of legal information in plain language, complicated rules, and lack of assistance in navigating public services;
- Loss of support networks after diagnosis;
- Family members refusing to accept the diagnosis;
- Family being too overprotective or not respecting decision-making ability and rights;
- Lack of money, which limits options;
- Fear of failure;
- Lack of privacy;
- Physical barriers and poorly designed built environments, such as on public transportation; and
- Noisy or crowded environments, which can cause distraction or confusion.
Overall, many participants emphasized that asserting their right to decision-making autonomy can be an emotional experience. It hurts to be excluded, and it is tiring to have to demand inclusion over and over again. Many of our participants were resilient, eloquent, and assertive self-advocates who are committed to helping to change the system. But their resilience does not mean this work is not hard. Discrimination is a painful experience. We are so grateful to all the participants for their courage in coming forward, and their commitment to system change.
Support for this Event
In addition to our two project collaborators, the Alzheimer Society of BC and the Centre for Research on Personhood in Dementia, a number of community agencies helped us recruit people to attend the forum, provided transportation on the day of the event, and stayed to assist with facilitation. We owe thanks to:
As part of this project we have also conducted research on what decision-making tools exist in the wider disability community. We will be publishing a literature review this year. We will use what we learned from research and consultation to develop a long-term project to create tools for health care professionals and others on supporting people living with dementia to being involved in decision-making. Watch this project page, follow us on Twitter, or subscribe to our newsletter for regular updates on this project.