Project Update: Engaging People Living with Dementia in Decision-Making

Project Update: Engaging People Living with Dementia in Decision-Making

September 20, 2021

BY Jess Fehrenbacher

The Canadian Centre for Elder Law (CCEL) is collaborating on a three-year project with people living with dementia, their care partners, and health care providers. 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. In 2021 and 2022 we are consulting with people to identify barriers and strategies. The end goal is to create resources for healthcare providers on how to support people living with dementia to meaningfully participate in decisions that impact their lives. To learn more, visit our project page or our powerpoint presentation.

Key project partners are the Alzheimers Society of BC, the Centre for Research on Personhood in Dementia, and Family Caregivers of British Columbia. The project is funded by the Vancouver Foundation.

Between July and September 2021, we had conversations with:

• 16 people living with dementia or related diagnoses,
• 21 people living with other disabilities, and
• 37 family care partners.

Consultation included:

• 12 English-language focus groups,
• 1 Punjabi-language focus group, and
• 6 individual interviews.

All group consultations were attended by a council member with lived experience to provide insight on the dialogue. This update summarizes what we heard from participants so far.

Decisions people with dementia or disabilities want to be involved in:

• ALL decisions

• Health care decisions:
  • Advance care planning and medical directives
  • Medical Assistance in Dying (MAiD)
  • Medication and drug trials
  • Palliative care and quality versus quantity of life

• Future and financial decisions:
  • Creating a will and managing belongings
  • Money management and budgeting
  • Representation Agreements
  • Power of Attorney
  • Funeral arrangements

• Everyday decisions:
  • Schedule and who to spend time with
  • Transportation, travel, and when to stop driving
  • Work, hobbies, and exercise
  • What to eat and what to wear
  • Level of risk and safety precautions

• Living arrangements and personal care:
  • Staying at home or going into a care facility and when
  • Who cares for you and how, who pays for it.

Challenges people living with dementia shared in being involved in decision making:

• Limitations of the system:
  • Difficulty navigating the system
  • Attitudes of health care professionals such as stigma
  • Limiting policies and laws
  • Lack of support options forcing decisions like going into a care home

• Limitations of dementia:
  • Cognitive issues such as issues in remembering, concentrating, and understanding
  • Doubt such as negative self talk and being afraid of making the wrong decision
  • Emotions such as stress, fear, confusion, and agitation around decisions

• Limitations of others:
  • Not having people you trust to help you make decisions
  • Other people taking over decisions

Strategies for people living with dementia to be involved in decision making:

• Communication: Importance of communication and having conversations early with family members
• Strategies by people living with dementia to be involved in decisions:
  • Developing coping strategies such as:
    • Writing things down or using a recorder
    • Weighing pros and cons and doing research
    • Making decisions in advance
    • Having enough time to make a decision
    • Visual information
    • Asking clarifying questions
    • Positive self-talk
    • Self-advocacy
    • Choosing which decisions to delegate and which ones to be involved in and prioritizing those decisions
    • Asking others for help and reminders
    • Consulting with people you trust
• Having trusted relationships: Importance of having people you trust involved in supported decision making, including health care professionals and family members.
• Having boundaries with people who are too controlling or want to make more decisions.
• Strategies by care partners to involve family members in decisions:
  • Communication strategies such as:
    • Providing limited options
    • Asking yes or no questions
    • Choosing which decisions to get family member involved in
    • Making enough time to discuss the decision
    • Communicating on an emotional level
    • Choosing the best time of day for a conversation
    • Using visuals
    • Reframing the question
    • Compassionate fibbing
    • Using third person to talk about decisions.

• Care partner as advocate and “translator” in health care system

System improvements

Participants shared that the following system improvements could help people living with dementia to be involved in decisions:

• Revise policies, legislation, and accountability to protect rights and treatment of people living with dementia
• Address health care culture:
• Respect personhood of people living with dementia with dignity, patience, taking enough time, seeing the person and not just the disease.
• Respect rights of people living with dementia by honouring the need to consent to treatment and increasing access to information and check lists for decision making.
• Increase training for staff on dementia and decision making
• Creating opportunities to consult trustworthy professionals for enough time (geriatrician, pharmacist, nurse, doctor, accountant, financial advisor, case manager, social worker, etc.)

Support for the Project

In addition to our key partners, we had support from numerous community agencies who helped to recruit and facilitate for community consultations. We owe thanks to:

• Inclusion Langley
• Inclusion BC
• DIVERSEcity Community Resources Society
• Richmond Society for Community Living
• Burnaby Access Advocacy Committee
• Plan BC
• PosAbilities
• The Disability Alliance
• The Bloom Group
• Dementia Advocacy Canada
• Burnaby Seniors Outreach Society
• Alzheimer’s Café: BC Chapter
• Council of Senior Citizens Organizations of BC (COSCO)
• Canadian Hard of Hearing Association (Chha-BC)
• And more!

Get involved

From September 2021 to April 2022, we are continuing to consult with people living with dementia and/or disabilities about their inclusion in decision making. We are also reaching out to key health care stakeholders to learn what would be helpful for them in developing tools to support decision making. To learn more or get involved, email Jess at [email protected] or visit our project webpage for upcoming events.