Project Update: Engaging People Living with Dementia in Decision-Making
January 7, 2022
BY Jess Fehrenbacher and Elayne McIvor
The Canadian Centre for Elder Law (CCEL) is collaborating on a three-year project. The goal of this project is to support people living with dementia to be meaningfully involved in everyday decision-making that matters to them. To reach this goal, we are consulting with people living with dementia, people living with disabilities, and care partners to identify and create strategies to support decision-making. The need for the project was identified in a previous project on Health Care Consent. We are consulting with people living with disabilities as they may have more experience throughout their life with asserting their decision-making autonomy. In contrast, people living with dementia later in life may be new to addressing their right to be involved in decisions.
In 2021, CCEL hosted 17 group consultation events and 8 individual interviews. These consultations were with people living with disabilities, people living with dementia, and care partners to get their perspectives on decision-making. For more project background, see our powerpoint presentation.
Disability Rights Gathering
CCEL’s most recent consultation event was an in-person Disability Rights Gathering on December 1, 2021. This event brought together 28 people living with different disabilities, dementia, mental illness, and other experiences. Two care partners were also in attendance.
We asked participants to share about decisions they have made and what others can do to support their involvement in decisions. The infographic below highlights themes from the discussions (Click on the image to access the full-sized version.
Which decisions and how much to be involved?
We heard from participants that they want to have control over their decisions in different parts of life. They want to be involved in decisions about finances, health care, work, education, living arrangements, food, rest and leisure, daily schedule, care support, transportation, and future planning.
Participants shared it makes them feel happy to make their own decisions. They said that having the support of a trusted person can help them to make decisions. Some participants trust a support person to make some decisions on their behalf.
What helps us in making decisions?
Strategies that help individuals living with disabilities or dementia in decision-making are:
- Building confidence in decision-making through practice
- Making an informed decision by having enough time to research a decision and weigh the options
- Knowing we have the right to make our own decisions
- Taking notes, recording, and preparing questions for doctor’s appointments
- Involving people we trust in helping make decisions.
What makes being part of decisions hard
Participants also shared some of the challenges they face that make being part of decisions difficult:
- Feeling disregarded and left out of decisions
- Difficulty communicating with friends and family
- Feeling unsupported by others and alone in decisions
- Being laughed at by family and friends due to difficulties in speech and forgetfulness
- Anxiety during appointments if a support person cannot attend due to COVID restrictions.
How support people can help us be involved in decisions
Participants said there are many ways a support person can help them be involved in decisions. Some themes are communication, empowerment, self-education, practical support, and approach:
- Use simple language, visuals, examples, and rephrasing
- Ensure two-way communication about decisions
- Really listen. Don’t go into a conversation with ideas about what I should do.
- Ask questions to understand my thoughts and feelings.
- Respect me and my boundaries, independence, and privacy.
- Give me options and ideas to help me make a choice, then let me choose. Don’t take over!
- Understand my rights to make decisions
- Educate others on my decision-making rights.
- Practical support
- Help driving to appointments if needed
- Attend appointments and support me by taking notes and reviewing information after the appointment.
- Be kind and offer emotional support to help me feel calm and safe.
- Be patient and encouraging.
- Partner with me.
- Build trust. I need trusted people to help me with decisions. You also need to trust me to make my own decisions.
Support from Health Care Providers
Participants also had ideas for how health care providers can support them in decision-making:
- Understand I have the right to make my own decisions and make this clear to me
- Patience: don’t rush me! I need time to do my own research and consider the options
- Do your research and be knowledgeable about me
- Use simple language instead of medical terminology
- Talk to me, not my support person. I might refer to my support person if I am having difficulty
- Take time to hear about my abilities, not just disabilities.
Participant & Facilitator Feedback
All participants and facilitators were invited to complete a brief survey after the event. We received responses from 23 participants and 7 facilitators.
100% of the participants that completed the survey told us that they:
- felt their ideas and thoughts were heard;
- learned something new;
- met someone new; and
- found the event to be respectful and accessible.
What did people like the most about the event?
“Being able to speak and be listened to.”
“Bringing together people with dementia and disabilities.”
Participants most enjoyed the opportunity to share and be listened to, as well as interact with and meet new people.
100% of the facilitators that completed the survey reported that:
- participants were able to talk with and learn from people with other lived experiences from them;
- the discussion added new insights about decision-making;
- the event fostered a respectful and accessible environment;
- participants had a chance to have their voices heard; and
- they felt equipped and valued as facilitators.
Facilitators indicated that the event was particularly successful in bringing diverse people together to share ideas.
To improve similar events in the future, participants and facilitators commonly recommended making the consultations longer and optimising the acoustics at in-person venues to reduce challenges hearing one another.
Support for this event
We would like to thank our three key partners, the Alzheimer Society of BC, Family Caregivers of BC, and the Centre for Research on Personhood in Dementia for their ongoing support of the project. The project is funded by the Vancouver Foundation. Several other community agencies helped us with recruitment, facilitation, and transportation for the event. We owe thanks to:
- Inclusion Langley Society
- Richmond Society for Community Living
- Disability Alliance BC
- PosAbilities Association of BC
- The Bloom Group
- Burnaby Access Advisory Committee (BAAC)
- Vancouver Persons with Disabilities Advisory Committee (PDAC)
- Council of Senior Citizens’ Organizations of BC (COSCO)
- North Shore Alzheimer Café
- Burnaby Seniors Outreach Society
- Inclusion BC
- Review of themes: We are currently reviewing everything we have heard from consultations with people living with disabilities, people living with dementia, and care partners. We will compile key themes from these consultations.
- Story recording: We hope to video record stories of lived experience with decision-making and dementia. If you would like to share your story, contact Jess at [email protected].
- Presentations: We will be sharing about the project at an Alzheimer Society of BC webinar on January 26 as well as other events throughout 2022.
- Health care interviews: We plan to interview 60 health care providers from now until Spring 2022 to gain their perspectives on supporting people living with dementia in decision-making.
- Tool development: Later in 2022, we will take what we learned from community members and health care workers and begin creating tools on supporting decision-making of people living with dementia.
Want to stay updated on next steps? Watch our project page, follow us on Twitter, or subscribe to our newsletter for regular updates on this project. You can also contact Jess at [email protected] with any questions or to get involved.