The post Alzheimer Society of B.C Webinar – Dementia and Decision-making first appeared on British Columbia Law Institute.

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:

1. Communication
   1. Use simple language, visuals, examples, and rephrasing
   1. Ensure two-way communication about decisions
   1. Really listen. Don’t go into a conversation with ideas about what I should do.
   1. Ask questions to understand my thoughts and feelings.

• Empowerment
  • 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!

• Self-education
  • 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.

• Approach
  • 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.

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

Next Steps

1. 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.
2. 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 jfehrenbacher@bcli.org.
3. 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.
4. 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.
5. 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 jfehrenbacher@bcli.org with any questions or to get involved.

The post Project Update: Engaging People Living with Dementia in Decision-Making first appeared on British Columbia Law Institute.

This panel, featuring Jessica Fehrenbacher, Jerry Gosling, and Myrna Norman, highlighted initial findings from CCEL’s ongoing consultations with people living with disabilities, people living with dementia, and care partners. A recording of the panel is available through this link. 

Jessica Fehrenbacher
Jessica Fehrenbacher is the Coordinator for the Canadian Centre for Elder Law’s decision making project. She has a Master’s degree in Social Work and has experience working with both the dementia and disability community in health care and community settings.

Jerry Gosling
Jerry Gosling is an active community member with lived experience of dementia and disability.

Myrna Norman
Myrna Norman is a well-known advocate in the dementia community and an author with lived experience of dementia.

The post 2021 Richmond Virtual Diversity Symposium Panel Video first appeared on British Columbia Law Institute.

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 jfehrenbacher@bcli.org or visit our project webpage for upcoming events.

The post Project Update: Engaging People Living with Dementia in Decision-Making first appeared on British Columbia Law Institute.

In Canada, approximately 76,000 people are diagnosed with dementia every year. People living with dementia regularly face stigma and misconceptions that make living with the disease a challenge. Sometimes family members and professionals don’t recognize how someone living with dementia is capable of directing their own life choices.

The Canadian Centre for Elder Law is collaborating with people living with dementia, their care partners, and other key stakeholders to address barriers to participating in decision-making. We work with advocates like Craig Burns, who was diagnosed with Alzheimer’s in 2016. Craig is an active voice for people living with dementia — he’s on the Dementia Advisory Council for our Engaging People Living with Dementia in Decision-Making Project. We asked him to share his experiences and perspective on decision-making while living with dementia. 

ALEC REGINO: Can you tell me a little bit about yourself?

CRAIG BURNS: I’m 68 years old and I’ve lived in Kelowna for 30 years. I grew up mostly in the Vancouver area. I’m originally from Winnipeg but went to school in Richmond. I have two grown children: a son and a daughter, both of whom are married. I have six grandchildren.

I’m involved with the Alzheimer’s Society of BC and I’m on their board of directors. I’m also in a leadership group of persons living with dementia. It’s kind of a sounding board where they bring challenges to us and also ask us about what we’re hearing or what we’re seeing, to kind of pick our brains on different ideas. I participate in Alzheimer’s Society seminars and I do fundraisers, public relations events, and public speaking on their behalf. The Alzheimer’s Society is my main focus.

I’m also a volunteer patient for UBC Okanagan, where they talk to me about my dementia and look at my general overall health. It had to be modified with COVID but I’m looking forward to it in the fall. I’m also a volunteer patient for a clinical drug trial. I’ve been on aduhelm since 2016, I get a drug infusion once a month down in Penticton that is addressing amyloid plaque in the brain. Lastly, I’m a member of a UBC Vancouver research project on the subject of discrimination and stigma of dementia. That’s challenging, but it’s rewarding because it’s a subject that’s very important to us as people living with dementia, that we are able to speak to that issue and provide some help for people on that.

AR: It’s great to hear that you’re a strong advocate for these issues and that you seem to be constantly involved in a lot of different projects.

CB: Yeah, my career experiences are in the not-for-profit world and management, so I have a soft spot for not-for-profits, especially for those dealing with dementia. It keeps my mind engaged and keeps me as sharp as possible.

AR: Can you tell me a little bit about your experience with dementia?

CB: Sure, I should give you a little bit of context: my mother had Alzheimer’s and was diagnosed at the age of 79. I was her buck stop, her care partner or caregiver, so I learned a lot about dementia and Alzheimer’s through that experience. She lived to the age of 90, and I helped her to relocate from her own living environment in Vancouver up to here to an independent living facility and then went into long-term care after that. So I had that experience when my turn came along.

I’ve had memory problems for over 10 years, and I wasn’t getting too much traction from the medical community when I would speak about my memory problems and say “there’s something wrong here.” I was finally diagnosed with Alzheimer’s in 2016. And again, I’ve been in the drug trial and it was assisting for a while, but the drug trial stopped and was restarted after about seven or eight months. I saw a significant decline from the first trial — it seemed to be sustaining my memory —but when it stopped and restarted, my memory started to falter even though I continued to be on the drug.

I also try to mitigate my dementia by diet and by exercise. I’m at the gym three times a week, I walk at least five kilometres, sometimes ten kilometres a day. As we’ve talked about, I also use my skills, my experience, and my voice for my volunteer involvement. And I have very good support from my family and friends as well. They understand what’s going on. They don’t understand what’s going on in my head, but they are supportive and I’ve been able to maintain some good friendships. And that’s very important, as a person with dementia, that you don’t isolate yourself and shut yourself off from the rest of the world.

AR: So I understand that for people living with dementia, decision-making processes can be a bit complicated. I wanted to ask about your experiences with decision-making, what are some significant decisions you’ve made recently?

CB: Good question. Let’s back up a little bit. I learned indirectly from my father — who was also involved in not-for-profit organizations for many years — as he assisted individuals with their long-term planning in the future, so I kind of caught that from him. I’m a fairly organized individual, so recently I updated my will and I had a representation agreement drawn up for myself.

I don’t have a spouse, so my daughter and my son are the buck stop for me. The representation agreement is for general issues, personal care, healthcare, end-of-life care, some details such as discontinuing treatments. For me, I don’t want any heroic measures or life support with medical interventions.

I’m not planning on leaving soon, but I have made my funeral arrangements. I do all this for peace of mind, but also so that I’ve taken care of things so that I don’t burden my kids. A little sideline: my son is a paramedic, So he understands medical issues when it comes to end-of-life decision-making that has to be made. I’ve communicated to my son and daughter what my wishes are and they know that they are to follow through on my directives.

AR: And what prompted you to plan all of this?

CB: Well, I’m a realist. I enjoy life and I find life is sometimes pretty challenging with dementia. I really do. I deal with depression and anxiety. I wanted an open conversation with my son and my daughter in terms of what’s going to happen. It’s just reality that things are going to deteriorate and there will become a point in time where I can’t verbalize, or I can’t communicate those things.

So I want to make sure that they understand that it’s up to them. I also want to make sure that I’m of sound mind when I make these decisions and talk to them about it and that they understand, because many people don’t do that. And then when it comes to push and shove, it becomes quite stressful and maybe some decisions are not made well. I want to mitigate that, but that’s the way I am. I’m kind of a planner, and so I want to have things in place before something hits the fan.

AR: I also understand that you’ve recently made a decision about your condo situation. Can you explain your decision to move to an independent living residence?

CB: That goes back to my pre-planning. As I mentioned earlier, I moved my mum up to Kelowna a few years ago and I scoped out and saw what facilities there are in terms of independent living, assisted living, and extended care. I’ve lived here for 30 years, so I have a pretty good idea of what my options are.

I lived in my condo for 17 years, and I started looking at independent living and what is called a “life lease”, which I think has the best of two worlds. You can put down a chunk of money on a suite and pay a reasonable monthly fee. The best thing about it is this facility has independent living, assisted living, and full-time care, so the transition from one to the next is seamless.

But it’s also very popular and there’s a waitlist. I was on a waitlist for three years and when one spot came up I did my homework and decided that I was going to do it. For people with dementia, changes can be a pain, it throws everything off, and it increases anxiety. If you can preplan beforehand, I figured that it’s a good way to do it. So I’ve been in an independent living residence since the end of May. It takes a little while to get used to it, but I’m good. I’m quite comfortable here, and my kids were supportive and assisted me in the move.

AR: What kind of advice would you give to others making decisions while living with dementia?

CB: Don’t leave it till the last minute. Be directly involved in your own health, take responsibility for your own health and don’t rely necessarily on your adult children — they probably have many other decisions that they’re doing as far as their own families. And discuss the subject, don’t leave it like “I don’t want to talk about death” — just start the conversation. Many people are uncomfortable and it’s not always smooth sailing in families with older adults who have some kind of impairment, whether it’s dementia or some other health issues. But it’s important to just start talking about it. My kids and I are on the same page and they’ve assisted me in it. So I’m very fortunate. I’m thankful for that.

AR: Is there anything else you want to share about your experience with decision-making, maybe something we haven’t covered?

CB: I just want to reiterate what I was just saying: when you make these decisions [earlier] you’ll have better peace of mind that you’ve planned. Have these discussions and don’t expect that your family will always make the decision you want; you’re an adult and you get to make those decisions. Cooperation with them makes it so much better.

You can learn more about the CCEL project on Engaging People Living with Dementia in Decision-Making on its project page. 

The CCEL is continuing to work to identify strategies and tools for supporting people living with dementia to assert their decision-making autonomy. Contact Jessica Fehrenbacher at jfehrenbacher@bcli.org to participate in the CCEL project.   

The post Making Decisions While Living With Dementia: An Interview With Craig Burns first appeared on British Columbia Law Institute.