Making Decisions While Living With Dementia: An Interview With Craig Burns
10 September 2021
By Alec Regino
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 firstname.lastname@example.org to participate in the CCEL project.