Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue No. 8 - Evidence - May 18, 2016
OTTAWA, Wednesday, May 18, 2016
The Standing Senate Committee on Social Affairs, Science and Technology met this day at 4:17 p.m. to continue its study on the issue of dementia in our society.
Senator Kelvin Kenneth Ogilvie (Chair) in the chair.
[Translation]
The Chair: Welcome to the Standing Senate Committee on Social Affairs, Science and Technology.
[English]
I'm Kelvin Ogilvie from Nova Scotia, chair of the committee, and I will invite my colleagues to introduce themselves, starting on my left.
Senator Eggleton: Art Eggleton, Ontario.
Senator Nancy Ruth: Nancy Ruth, Ontario.
Senator Frum: Linda Frum, Ontario.
Senator Stewart Olsen: Carolyn Stewart Olsen, New Brunswick.
The Chair: I want to remind us all that the committee is continuing its study on the issue of dementia in our society. We are very pleased today to have four members here from the Ontario Dementia Advisory Group. I will name them because, as I understand, one of you is going to make the presentation, and you are all available for answers.
Appearing by video conference will be Mary Beth Wighton, and in the room we have Bill Heibein, Phyllis Fehr and Bea Kraayenhof. Is that correct?
Bea Kraayenhof, Board Member, Ontario Dementia Advisory Group (ODAG): Yes.
The Chair: Thank you very much, Bea.
I'm going to invite Mary Beth Wighton to make the presentation.
Mary Beth Wighton, Board Member, Ontario Dementia Advisory Group (ODAG): Good afternoon, Mr. Chair and members of the committee. The Ontario Dementia Advisory Group, ODAG, thanks you for the invitation to appear before you this afternoon. It is an honour to represent the 747,000 Canadian people living with dementia. It is important that people with dementia are able to participate as equals in all dialogue about us. According to the UN Convention on the Rights of Persons with Disabilities, CRPD, this is our human right.
ODAG is a group of people with dementia living in Ontario. We are involved in policy-making strategies, research projects and education initiatives. We work with organizations at the local, provincial and national levels.
We have strategy partnerships that help us represent ourselves. They have played a key role in our success. In addition, we have close ties to Dementia Alliance International, the international self-advocacy group of people with dementia.
We are here today as a united voice of four people. When one falters, the others will step in. This is what makes us strong. We appreciate the Senate's accommodation for recognizing this and modifying its rules.
We are parents, grandparents, spouses and friends. We have had long and successful careers. When we were diagnosed with dementia, these experiences did not disappear; they are and will always be a part of us. In fact, we rely on these roles and experiences to help us with our advocacy work.
We all have many issues important to bring to the Senate subcommittee, but three topics of significant importance to people with dementia are, one, the human right to a more ethical pathway of care; two, the right to be treated with the same human rights as everyone else, under the UN Convention on the Rights of Persons with Disabilities; and three, the need for more research emphasis on a social rather than a medical model. Research does not focus only on a cure. It is important that there is a more holistic approach to well-being.
Lack of involvement of people with lived experience, stigma and insufficient education regarding dementia are deep- rooted in Canadian society. This impacts us greatly.
When I was diagnosed with probable frontotemporal dementia at the age of 45, I was told to get my affairs in order, that I had about five to eight years to live and that I would eventually live in long-term care.
My partner was told she would be responsible for my welfare and that it would eventually become totally time- consuming. The doctor then revoked my licence on the spot as she told me I did not have the capacity to drive any longer. That was interesting, as I drove to the hospital without any issues. My loss of licence was done without any kind of due process.
My story is like most other people living with dementia. It is our desire to live life fully and utilize our remaining skills that help us remain strong. We reject the notion of going home to die. The time between diagnosis and end-stage dementia can be many years. In the meantime, we have the ability to live life well.
If I had been diagnosed with a different illness, say stroke, I would have received an inter-professional team approach to my care. However, dementia is different. There is not a single government body dedicated to dementia. The current health-related silos don't work well, either. This results in difficulties in achieving our optimal physical, cognitive, emotional, communicative and social well-being.
If I had been diagnosed with a different illness, say cancer, the oncologist would spend time with me educating me on this disease and options I have available. However, dementia is different. I received a pamphlet from the doctor. She said she would notify my local Alzheimer Society as they are the experts in dementia. Beyond that, she didn't offer any hope, services, or suggestions to live life well with dementia or to fully participate in society.
Finding a cure for dementia is extremely important. However, our lived experience is as important as finding a cure. We hope there is a more balanced focus in research not only about a cure but about better services, treatment and care.
There are many things Canada can be proud of, including Dr. Yves Joanette, Scientific Director of the CHIR Institute of Aging, who has a new position as Chair of the World Dementia Council.
The UN Convention on the Rights of Persons with Disabilities has a regular process of reviewing the position of people with disabilities. Canada will be the first country to be discussed at the UN in August 2016 to report on its progress of supporting people with disabilities. It has agreed to be a pilot for others to learn from. We believe this can be used to advocate for improvements in dementia care and services.
In addition, we applaud the launch of Dementia Friends Canada and the Alzheimer Society of Canada's proposal for the creation of a national dementia strategy.
The CRPD is important, as it helps to spell out practical steps to ensure persons with dementia enjoy the human rights on an equal basis with others. In particular, we recommend that Canada take action, first, regarding equality and non-discrimination, including providing reasonable accommodation and accessibility. This may include unlawful discrimination by health care, driving licence authorities, insurance companies and employers. In a nutshell, this means to make changes so that we can continue to participate and we have access to anything and anywhere, the same as anyone else has.
Second, introduce the Dementia-Friendly Communities, DFC, model. It has goals of reducing stigma, ensuring early diagnosis, having consistent and reliable travel options, practical support and community-based solutions, including helping us to live independently and safely in our own homes. There are many benefits of this model, including empowerment for people with dementia and the financial benefit to less time needed in costly residential or hospital care.
Third, reduce the disproportionate use of antipsychotic drugs, physical restraints and being detained in psychiatric institutions.
The time is now to make lasting changes affecting people living with dementia and care partners. This must be done with us and not for us.
Thank you.
The Chair: Thank you very much. I'm now going to turn to my colleagues to start the questioning. Colleagues, please direct your question in the first instance to one of our witnesses. I'm going to start with Senator Eggleton, to be followed by Senator Stewart Olsen.
Senator Eggleton: First of all, thank you very much to all of you for being here. People with lived experience, I think we all agree, are very important to be a part of solutions to dealing with dementia, including a national strategy. I think we would find a lot of agreement with the kind of things you suggest need to be done. I really noted your fact that research should focus not just on a cure but needs to focus on care and that people who have lived experience need to be able to live in a respectful situation with dignity and be able to cope as best they can along with people that are assisting them to be able to go through these years with dementia.
I wanted to ask about Dementia-Friendly Communities. I'm a former mayor, and I appreciate these kind of things being done in different local communities and where local organizations and local city councils can help to make them happen, because the attitude of people in the different communities is vital for you to be able to get the kind of respect and life of dignity that you are looking for and rightly deserve.
I also note in that regard that there is a program called the Blue Umbrella program, which trains local businesses on how to interact with someone who has dementia.
Tell me about your experience about Dementia-Friendly Communities and the Blue Umbrella program, where they are operating in Canada and where you plan to go forward and establish more of them.
I'll start with Mary Beth Wighton, who did the presentation, but anyone else who wants to comment after, I'm happy to hear from you.
Ms. Wighton: Thank you for the question. The Dementia-Friendly Communities program, in particular the Blue Umbrella program, is significant in Ontario, with the ASO having a program manager. I believe five different communities have stepped forward to try this.
The focus is, in particular, on businesses — whether that's a bank or the post office — to help people with dementia go through their normal procedures of life. Phyllis Fehr, one of our board members, has great knowledge of that.
Phyllis Fehr, Board Member, Ontario Dementia Advisory Group (ODAG): The Blue Umbrella program was started three years ago in Bobcaygeon, Ontario. The Alzheimer Society went out and taught the different businesses about dementia, how they could deal with people with dementia and make it easier for the person. It was kind of the pilot project, and it did so well they have now gone into Paris, a section of Waterloo, Ontario. There is Cornwall. Cornwall is on hold right now, though, due to staffing. There is one other area. There are a few places up north that have gotten private funding from companies that are looking to bring a dementia-friendly community into their area.
They have gone out to these stores and educated the staff on how to identify somebody with dementia. Because if you look at any one of us, you'd never know we have dementia or Alzheimer's. Some people wear a little blue umbrella on their lapel. All the staff are very well trained. They have a certain area of the store that if the store is very busy and too noisy, they can take them to the side. Let's say it is a shoe store. They can go to a separate area and they can assist them.
One store in Bobcaygeon will actually go out to the car, because sometimes people are afraid to even go into the store. If somebody brings a client to that store who needs a pair of shoes and they can't get them into the store, a sales clerk will go out to the car, talk to the client in the car, go back in, and then take the shoes out and try them on, and that type of thing.
We get upset very easily. We get frustrated. With too much stimuli, we get off track and we can get disoriented easily. They're trained to try to keep things calm. They decrease the lighting in stores and stuff like that. It's just a wonderful program.
They have an evaluation program that goes with it. A secret shopper goes in to check and see how the store is doing. If you're in a grocery store, all the staff is trained, the cashiers are trained. If we go up and we're trying to pay and we're fumbling with our money — because sometimes it's not that we don't know what money is in our hand; we can't do the math in our head; we can't figure it out and do it quickly. They're trained to keep it calm and not to say, "Come on, hurry up. I've got 20 people waiting.'' They go through specific training for that.
I've actually toured Bobcaygeon myself, and I truly loved the atmosphere. It was so welcoming. You felt like you were part of it.
To do with the same thing, I've had two experiences in my hometown where I've gone into one store, forgotten something that I needed, or what kind of lunch meat I eat, and they've said, "If you don't know, I can't help you.'' Whereas in a community environment that's dementia-friendly, the clerk would then say, "Well, let me help you.'' She'd let you taste pieces of lunch meat until you get it. That's just general customer service that we knew when we were younger. When we grew up, they always did that. Now everybody is just too busy to take the time and slow down.
I can't say enough about the program. I sit on the evaluation program for the Blue Umbrella program, and we all help on the Dementia-Friendly Communities steering committee.
Senator Eggleton: The Blue Umbrella program, you say they wear a pin with a blue umbrella, so that's how you know who to approach in the bank or restaurant?
Ms. Fehr: No, we wear it, so the people know we have it. How we know is they have a blue umbrella on their window. Only the stores that have the training will put a blue umbrella.
Senator Eggleton: A dementia-friendly community, how does that happen? Is it a designation by city council or something? How does it happen?
Ms. Fehr: We're just kind of planning that right now. We have the Blue Umbrella program. The Dementia-Friendly Communities program is going to be bigger than that because it has to involve a lot more. Now you have to involve all your bus drivers, everybody. A dementia-friendly community is training everybody in the community, not just the stores. It's about having people down the street know what people with dementia have, what some of the symptoms are. Sometimes you see your little neighbour down the street walking out in the middle of the winter and she only has a light sweater on. Most people wouldn't stop her and say, "Mary, come in. It's cold outside and you're dressed inappropriately.'' Sometimes they get upset because they're under stress and they start to act out. If you approach them wrong, it only enhances it rather than trying to calm them down. It's in training everybody to try to be more understanding and more accepting of it.
Bill Heibein, Board Member, Ontario Dementia Advisory Group (ODAG): In addition to being on the board of ODAG, I'm also a member of the Alzheimer Society of Canada advisory committee. The Alzheimer Society of Canada is attempting to standardize a type of program comparable to this which they hope to roll out from coast to coast so that all societies in Canada associated with the Alzheimer societies will take a common approach to this.
I'm from Thunder Bay. In Thunder Bay, the Blue Umbrella program is just now being put into place. The Alzheimer Society of Thunder Bay is working with CERAH, which is the Centre for Education and Research on Aging & Health at Lakehead University. They're working together to find the best way to get the concept into the stores, into the community in general.
To some degree we don't have the same problem. Thunder Bay, in many respects, is the old small-town community. There is a lot more assistance from people if they see someone in trouble than in big cities.
The Chair: Bea, do you have anything to add on this?
Ms. Kraayenhof: I think Phyllis did pretty good on that one. I feel there is an immense importance to that program. If more cities and towns and villages across Canada would employ that program, I feel the different — literally, it's like it takes a village. Well, it really does. If you don't help those villages to do that, I think across Canada it would make a big difference.
Senator Stewart Olsen: Thank you all for being here. One of the things I can say is that it's good for me to be able to talk with all of you, because I've had experience in nursing with people but mostly much further progressed. I think there's a change in attitude in Canadians now that recognizes this can be a long progression.
Where I want to go with you is your diagnosis. I live in a small community, so I understand what you're saying about small communities. But when you get the diagnosis, people that I know are so afraid, and their families are so afraid. I wonder how you dealt with that. If could I have something briefly from all of you, that would be very helpful.
Ms. Wighton: My diagnosis happened when I was 45 years old, and I was very successful in my career. I found it was cognitive issues that were going on and depression and stress. Therefore, when the diagnosis did happen, obviously due to the age, no one really wanted to say you have dementia. In fact, that's what happened. And that was very much due to a doctor who believed I had it and resisted the stigma of diagnosing someone so young.
There's a real key here when we talk about the diagnosis procedure, because just like people are afraid to get the diagnosis, many medical individuals are also afraid to give the diagnosis, yet they're not doing us a favour by doing that. It's an interesting parallel when you think about it.
Mr. Heibein: In my case, I was 59 when I was diagnosed. I was diagnosed January 2000, at which time I was basically told: Get your affairs in order, make sure your will is made up, do this, do that. I virtually took early retirement from Ernst & Young. I was with them at the time. I've been with just about every large international accounting firm due to mergers, de-mergers re-mergers, and I have never left my office to do it. It is a typical small town.
The way I normally describe the diagnosis, in my case, it was literally like getting a kick in the teeth. It's the last thing I expected, especially at 59. I thought this diagnosis of dementia — or, in my case, early Alzheimer's — was something I would expect someone much older to receive.
My wife tells me that I went into a deep depression. Now what snapped me out of it was, in addition to the accounting operation that I was involved with, my wife and I own and operate Amethyst Farms, and we basically, under that name, have, bred, trained and shown registered quarter horses.
Three months after I was diagnosed, I had 11 horses in the barn, and three mares were due to foal. Come April, the mares started foaling; I had no time to be concerned about myself. I got so tied up in the operation of training and showing and whatnot that the diagnosis went off the rails.
Fortunately, I didn't believe what they were telling me, and the doctors came back to me a number of years back and said because it hasn't progressed as we had expected, we want you to be completely retested.
In 2008 they ran me through the psychological tests, brain scans, the whole deal, and the same diagnosis — early- onset Alzheimer's. My difference in the eight-year period is a definite decrease in my short-term memory. Everything else is relatively constant.
I think it's because of the fact that owning a farm, I operate on pretty much a seven-day-a-week fixed schedule. I know what I'm going to do when I get up in the morning right through until I go to bed at night. The seasons change, but I know what I'm going to do. I have repetition on my side. And the fact that I'm still involved socially and physically on a daily basis has had a big bearing on where I stand today.
Ms. Fehr: I was an ICU nurse, and on my days off I worked as a sexual assault nurse examiner. I was very busy. The background is my mother and my grandmother had dementia, so I knew the signs and symptoms. When I was around 48, I started to see little things that I thought, oh, I'm just overworked; so I let go of my part-time job at that point.
I continued on, but one day when I was in the ICU, in the middle of a shift, I could not remember a drug, and this is a drug I'd used for 25 years. I knew enough to go and look it up, but I could not remember it. With that I went to the doctor.
When I went to the family doctor it was typical, "Oh, you're menopausal and depressed.'' They went through a whole gamut. Finally, I did tell a little white lie and said my migraines were worse, just so I could get to see a specialist. Once I saw the specialist, she did some testing and she sent me on to see a gerontologist. When I saw her, she didn't want to do anything because I was young and still capable. I thought, no, but I waited the year. She wanted to see me in a year. When I went back a year later, she did the testing, and the testing showed that I do have early-onset Alzheimer's and Lewy body dementia; so I have a dual diagnosis.
At that point, she said, "But you're still capable, you're still dressing yourself. Come and see me when you can't do that.'' Me, in my mind, being a nurse, it was no, early intervention is key.
I went back to the neurologist and told her that I'll never see that person again; find me somebody new. I wanted to get treated earlier because I watched my mother and my grandmother decline with it because they waited too long.
I went on the meds, and I was in a fog. I couldn't get out of this fog. To me it was bad because I could hear things and I could understand it, but I couldn't quite get my thoughts back out. Once I went on the meds that kind of lifted. When that lifted, I was 54 years old, and I made a conscious effort at that point to say that I've watched people suffer with dementia through my whole career and in my family, and things need to change. They give you a 10-year window, so that's when I decided I'm going to make sure the stigma and everything around dementia gets changed.
Ms. Kraayenhof: I'm a mother of four children, and I was in nursing as an RPN, and before my diagnosis already, my memory, I noticed, was getting bad. My fellow nurses were covering up for me now and then, and when that happens, that is not a good thing.
My kids were noticing, too, and they said, "Mom, you're getting Alzheimer's.'' I said, "Oh, for heaven's sake.'' You don't accept it. You don't think it can happen to you, just your patients.
I finally did listen to them. The aha moment was I had a circle of friends, and we'd go to our friend's house every Tuesday night, and we would meet at a Timmy's on the one corner, and we'd go with our friend who has a van, and we'd all drive to Port Colborne.
I got out of the car, went in the van, and we had an awesome evening together. At 10:30 at night we came back to my car, and we noticed a policeman parked beside it. We thought, out having doughnuts, I guess. But he was still in the car. I got in the car, and I thought, "That's odd. I didn't lock it.'' I went to start it and it made a horrible noise; it was still running.
I thought, okay, before I kill somebody on the ward, I had better go to the doctor. I went. Thank heavens she did not pooh-pooh it, and she was aware of my background; so she knew I wasn't going to say something that really was not a concern of mine.
So she said, "I'd like you to see another specialist and see what he says.'' So it was another two months automatic wait before I got in to that.
He was wonderful. I went through testing, and he said, "Bea, I hate to say this but I think it's early-onset Alzheimer's. I'd feel more comfortable if you saw this specialist who I trained under in Hamilton.'' Another two-month wait. She did more testing — MRI, CT, the works — and came back and said, "Yes, Bea, I hate to say it but I think it's early-onset Alzheimer's.'' I've dealt with patients who actually have Alzheimer's at the hospital, and I said, "I don't present the same. I just don't present the same.'' She said, "Well, they're treating earlier and earlier, and you're quite cognitive at this stage, but we'll get further.''
As she followed me a year later, I had made no progression, but some other symptoms had started happening physically. She said, "Bea, if I didn't know any better, I'd almost think you had frontal lobe dementia. Have you ever had a brain injury?'' I said, "Yes, I was hit by a car when I was 9.'' And she said, "Well, why didn't you tell me?'' I said, "You didn't ask.'' We get very literal, so if you don't ask, I won't think about it. So she said, "Okay, I have the diagnosis.''
So at 48 years of age, I was diagnosed with frontal lobe dementia. I will be 63 in July. She told me I would be okay for about eight years, and then her words fell off the cliff. I've proven her wrong. I aim to continue doing so. Because of our experiences here, not all of us are typical. So many of us are atypical, and because of that, there has to be thought given to us. No not all of us with dementia —
The Chair: Pause and take a drink and relax a little bit. We have time to wait for you. Don't rush yourself.
Ms. Fehr: She has tremors and it affects her vocal cords.
Ms. Kraayenhof: I forgot what I was saying. Here we go. This is what happens to us, guys.
Ms. Fehr: I think you were talking about how important early intervention is.
Ms. Kraayenhof: I can't stress this enough to you, how not all of us are sitting in a corner in a chair with a diaper on hoping we're not wetting the floor. That is putting it crudely, but that is what happens to us in the end stages. But that is not us, and there are more and more of us presenting this way. We can still be useful members of the community. Don't ignore us, because we still have so much to offer. As with the dementia strategy program, we could be the experts because we live with it.
The Chair: Bill, you signalled —
Mr. Heibein: I was going to make one quick comment. At the time I was diagnosed, I may have received to some degree a little bit of preferential treatment. The reason I say that is that our family doctor was a client of mine for over 20 years. At one time he was also a next-door neighbour, so he knew me quite well, and he knew something wasn't right and he pushed the testing through.
In retrospect, I think what it really was is that he simply didn't want someone who had the potential to have a dementia problem doing his tax returns any longer.
Senator Stewart Olsen: I know it was a very personal question, but the reason I asked you is exactly for what your responses were, in that it's a message to people who are newly diagnosed. It's a great message, and I'm so grateful that you shared with us because it's really important in our report to say, "You know what, there are people, it's not a hopeless thing.'' I think we have to get past that and begin to do a lot of what you said.
Ms. Fehr: I just wanted to add. I think with our group in particular, we all went early, and that's key. A lot of times people aren't diagnosed due to fear of going to the doctor because of stigma; they don't want to upset the apple cart, so they will not go and get checked.
We are a group that were checked early, and that's the key. That's where you're going to find change will happen. The earlier we can catch the disease process and put them on meds, even though the meds aren't a cure, it slows the progress down. That then allots us time to prepare so that we can stay in our homes and do things for ourselves longer than having to go into care homes.
Senator Frum: I would like to echo what Senator Stewart Olsen said about how grateful I am for your very personal and candid remarks. I'm sure it takes a lot of courage and it's very much appreciated.
My question follows from the last. I would invite everyone to speak on this. It sounds like from what you said, at least the panel in the room, that you voluntarily withdrew yourselves from the workplace shortly after your diagnosis. I'm not sure about you, Ms. Wighton. I know you spoke about the issue of workplace discrimination in your remarks.
I assume you have all exited the workplace. In retrospect, how do you feel about that exit? In terms of directing us on this, what are the appropriate expectations in the workplace?
The Chair: Because she's at a distance and a disadvantage in terms of signalling, would you mind if we go to Ms. Wighton first?
Senator Frum: Sure.
Ms. Wighton: Thank you for the question. It's an interesting one.
I spent 10 years in the dot-com business. I've travelled the world. I've managed million-dollar projects, so I have a very technical background and knowledge certainly in project management.
My partner and I were then co-owners of a business. It was a small business, so we had the challenges of a small business, trying to keep afloat, which puts us at a whole different disadvantage, because when you get dementia or when you're cognitively challenged, that meant I couldn't remember the different business partners, what our strategies were or the incomes we were expecting. All of those different normal lead-type of management I wasn't able to do or did poorly. I was eventually put on leave by my doctor. As a small-business owner, getting put on leave by your family doctor is not good for your business. That was one of the reasons for the business actually closing.
I felt terrible. I felt like I was letting my family down because I was the primary financial income earner, and it immediately put us in financial stress.
I think it's the recognition early, using the HR system, that people can still be a big part of employment, but it's appropriate employment. I think that's the key. Once we figure out how to do that, it could change a lot of things because it means we will have people with dementia still gainfully employed. From that, we know what happens. That means we're not taking money from taxpayers' dollars. We're not going down in a financial downward spiral. It affects us as far as our mood is concerned. We're still contributing citizens.
It's an important part that the government should look at: How to keep people with dementia or cognitive impairment still gainfully employed? It's an important question to ask.
Senator Frum: Just to draw that back, do you work now? Have you found something else to do?
Ms. Wighton: You're looking at it. I'm an advocate. Like many other people, all of a sudden I had a lot of time on my hands because I had been diagnosed early. Most people want to be contributing citizens whether at the provincial or local level. I wanted to be a strong advocate. This is what I do pretty much every single day — push for the rights of people with dementia.
Ms. Fehr: I come from a union background. When I got sick, I first went on sick leave. I wanted to go back so badly, but I knew I couldn't put anyone's life in danger because of the type I work I did. At first they wanted me back.
They push you to come back and then you're stressed, so your dementia goes down because of stress and your confusion gets worse.
I was walking a really fine line for about the first two years because of trying to get the whole employment thing straightened out. Do I stay at work? Do I go to a different job? Do I go down to a porter, even, because I probably could have gone to work as a porter, but that affects your pension that you've been working towards your whole life. It affects your income and benefits. This is a big problem that we really desperately need to sort out. How many people in the early stages that aren't diagnosed make a mistake at work and get fired and lose their income and benefits and all of that?
Once your sick benefits run out, you go on long-term disability. Again, the insurance company that you've paid into your whole career of 25 or 30 years doesn't want to pay you. They're always after you saying, "Well, you can go back to work.'' It's always a fight for us to do what we do, stay home, not put anyone in danger.
Would I love to still be working? Yes. I absolutely loved my job, but if I can't remember the medications, you don't know when you're going to make a mistake. That's the other thing. To me that's not safe. I will not do that. As an advocate, I don't think I'm going to kill somebody doing what I'm doing now.
I think that comes into play there. We have to look at all of that — the insurance companies and benefits and all of that.
Senator Frum: One thing triggers me to ask about the role of work or activity in the treatment of the disease. I presume people miss that engagement and it accelerates the disease. Is that a fair comment?
Ms. Kraayenhof: That is such a fair comment. I'm from the unique position that not only was I in the nursing profession, but I am now on my own. More and more of us single people will be diagnosed. You have no idea the burden it is on you.
I have for so many years put into the Canada Pension Plan. The second I had to stop because of this diagnosis, I could no longer get a red cent of that even when my Old Age Pension starts. That's done. They won't give it to me because I had to go on a Canada Pension Disability. The second you take a red cent of that, all that money you've put in there is done, gone, finished. It's very unfair, but that's what it is. I live on so little money you would be shocked.
Of course, your licence gets yanked. You can say to yourself, "Take a taxi then.'' Where is the money going to come for that? I can't afford it. I had to start taking a bus. Physically, I had less and less energy. My knees from a car accident I was in are killing me. I can't get around much anymore. I had to get to that bus stop and hope I got the right bus.
One time for a 10-minute bus ride I took the wrong bus. An hour and a half later I was still on that bus. I called up the bus people and said, "Can I please go on the transit that comes to pick me up, the handy transit I think it was called at that time. She said, "How far can you walk? Can you do 100 feet by yourself?'' I said, "Yes, I think I could do 100 feet.'' She said, "Oh, well, then you can't.'' I said, "Ma'am, I have dementia, and the bus system is too much for me now.'' She said, "I'm sorry, that's the rules. I said, "That is discrimination.'' She said, "I'm sorry, I don't make up the rules.'' This is what we deal with. In every aspect of our life, we have to fight for something.
Becoming an advocate, though we don't get a red cent for it, has given us purpose. We feel we can speak for those who can no longer speak for themselves.
So often they have told us, "This is what we're going to do for you.'' We've had enough of it. We said, "No. You should be asking us what needs to be done. Then we can help you coordinate it.'' We're the experts. We live it.
Senator Nancy Ruth: I want to go back to the Blue Umbrella program you talked about. What happens when the gas man comes to the house or the television repairman or the Rogers person? Is there any system for notifying a household where there's a person with dementia?
Ms. Fehr: At this time I don't think there truly is because you have to get out and train every telephone repairman and every gas man.
There's another thing you have to be careful of, especially in today's society. If you put that blue umbrella in the home window to signify that the person living in that house has dementia, guess what happens. We're targeted. We're walking a very fine line and some people will not self-identify because they're so afraid of being taken advantage of because it will happen.
Mr. Heibein: In Thunder Bay, as I mentioned, they're just starting to roll this program out, but they're taking a slightly different approach: They're not proceeding on the basis of identifying the individuals; they're trying to put the blue umbrellas on locations, be it restaurants, stores or banks.
Ms. Fehr: Exactly.
Mr. Heibein: Anyone who is having a problem knows that is a friendly place that understands they've got a problem and can go in and talk.
The Chair: I think you've illustrated both sides of the issue with the last example. There is the issue of getting services at locations. That's enormously helpful for us.
Could I get Ms. Wighton to come in on this? Then, senator, you can continue, if that's okay.
Ms. Wighton: Just a quick comment. Dementia-friendly communities are much more developed in Europe. They are very busy and there is a lot to learn from that area of the world, because they're producing a lot of different types of evaluations and necessary criteria in order to be labelled a dementia-friendly community. So Ontario is definitely looking to that area of the world and learning at this point.
Senator Nancy Ruth: Two other things. One, we heard testimony the other day that music was very important and that there was a part of the brain that was not affected. I would like to ask all of you how you use music.
My other question —
The Chair: We'll take them one at a time, I think. Let's go with the music.
Ms. Fehr: Can we start with Mary Beth?
Ms. Wighton: It's funny: I never used to be a dancer, but I love to dance now. It doesn't matter where I am; I have my headphones on all the time. I usually wear some kind of musical thing that I can push the buttons, and then it has music all the time.
I listened to music before appearing today, because one of the things it does is it brings me down. It's a great instrument and a cheap instrument to really help alleviate the stress of people. So I have music with me all the time. I love it, and every once in a while, I'll break out in song for everyone to hear. It really does play a huge part in dementia improvement.
Ms. Fehr: Music does calm us down. What a great tool if we can use something like that in the nursing homes. The nursing homes are so busy, and everybody is running around because they're all stressed and have to get all these patients washed and everything. We know that added stimuli enhance how we're feeling. We get more stressed out. If you had music running all the time, it does help.
I find when I'm feeling stress, I go in, sit in one chair and put my headphones on with my music on, and I have artwork in front of me. I kind of focus on that and almost go into a meditative state. You kind of bring yourself down to stop these stimuli. It's like a stimuli brainstorm going on in your head.
Mr. Heibein: I played bass for roughly 60 years, and I played in Toronto for a number of years before we moved to Thunder Bay in 1973. For the last 43 years, I have been the bass player with the Bottom of the Barrel jazz band in Thunder Bay, which is a jazz and swing group. We do a lot of charity work in the hospitals and seniors homes.
This band was started in 1967 as a centennial project by Dr. Tom Harrington, a coroner in the Thunder Bay area. One of the reasons we do so much charity work in the homes is because Tom always had the view that if we did a lot of that type of work, when our time comes, we're going to get a better room. So far we haven't had to test this theory, but we're still operating on that basis.
I fully agree, particularly from the standpoint of playing in small jazz groups, because you're improvising and you're forced to think. Whether they say you can do it or not, you're forced to think.
Ms. Kraayenhof: I've always loved music. My mother refused to have a television in the house, so I was one of the few people who was raised without TV. I hated her for it at the time, but I tell you, I've become a wonderful reader. I love reading, and music always did it for me. She never told me I couldn't listen to rock and roll.
I love it so much, but I cannot get the radio in my apartment building. It's something about the rebar in the walls. I just don't get reception. But I was told about Spotify. It's $10 a month, but do you know what? That music is so worth the $10 a month for me.
The one thing I want to say about dementia, though, with music, it has to be the kind of music a person enjoys. If it's a genre they don't like, it absolutely does in your brain within two seconds.
You have to ask your mom and dad before they lose the ability to speak, "What kind of music do you like?'' If you put on the radio next to them and make them listen to a genre they don't like, I guarantee you their dementia will go twice as fast. But if you put on the stuff they like, I guarantee you it will do twice as much good.
Senator Nancy Ruth: In one way or another, you've all quite passionately said you can still be useful. I wondered if you could articulate other ways beyond advocacy how you see that.
Also, what needs to be taught to your families and friends about your being useful?
Ms. Wighton: Sure, I get the hard question now, right?
The Chair: You have the right to turn it over to any of your colleagues, if you wish.
Ms. Wighton: No. I'll get us going.
I think when the question comes about being useful, it's useful in that you are showing anyone that you can live well with dementia. I think that's of great use to society. Being an advocate is useful, because there are many people who can learn from that, including my family. My mother passed with dementia just over a year ago.
We are able to learn and teach people. Sometimes you ask yourself, "Why am I here? What is my role in life?'' The shift needed for people with dementia to live better — that's my usefulness. By people participating in that with me, we're learning how to do that.
So that's what you could say about my usefulness. I see it as very important.
The Chair: That's an exceedingly important observation: That we have to recalibrate our concepts of what genuine contributions are in society.
Did anyone else wish to add anything?
Ms. Kraayenhof: I had the lovely experience of — we get this, okay, guys? Our brain, at the most optimum time, just shuts.
When I had the experience of volunteering at a school in a high-needs section of the city, where the parents weren't helping the kids read and things like that, the kindergarten program was having a hard time with some of the children. They needed more one on one. I heard about that, and I ran over there and said, "I'm with you. What can I do?'' Every week, for two hours, I would go there and she would give me a child that was high risk. I was allowed to sit in the teachers' lounge, one on one with that child, often on my knee, and read stories to him and then ask him questions about what he felt it would mean. Often that one-on-one time was the only one-on-one time with an adult that child ever got through the week.
I did that. I think I got more out of it than they did. I would walk through that door, and they would come running. "Ms. Bea, Ms. Bea, is it my turn?''
Not only did it help them, but it has been proven that reading aloud is good therapy for people with dementia. So it's a win-win situation.
There is something a person who has dementia can do other than advocacy. We can volunteer in so many ways. If there is a baseball game that's being put on, say, to raise money for a function, have us go there and give out water bottles. Let them realize we're out there. We're not stuck at home. We can help.
The Chair: Thank you very much.
Mr. Heibein: I'd like to say that one of the things I think we can really do is the more we can be seen and heard in public the better. One of the reasons I say that is I know when I was first diagnosed, the first thing you want to do is just withdraw and hide. The more we can be seen, the more people who have just been diagnosed and start to pay attention to what's happening, hopefully they're going to get the self-confidence back to be able to go out and participate.
Senator Seidman: Thank you all very much for your sobering courage and strength to be with us today and speak from your hearts. It's really touching. It really does touch me enormously.
I'm going to take up your plea, Bea, about what needs to be done, but I'm going to ask you a question specifically in response to the health system and health practitioners. We have two health practitioners sitting right in front of us right now with real live experiences, and that would be extremely valuable to us.
Also, Ms. Wighton, you mentioned in your presentation that we hope there is a more balanced focus in research, not only about a cure but about better services, treatment and care.
I'd like to focus on the treatment and care piece if I might and hear from you what you think we might have to do to adapt our health system. And health practitioners, what would they have to do to be more responsive to your needs?
The Chair: Phyllis has indicated, and Mary Beth will come in later.
Ms. Fehr: We're not professionals. Yes, we are nurses, but we're not the professionals that need to be answering these questions. What we can do is talk from our heart and tell you what we feel, and that's what I will do.
When we look at the health care system, we need to get people better educated on dementia. We need to start teaching the residents more about dementia.
If I ask any nurse if they know about dementia, they will tell you, "Yes. I was educated in it in school.'' But really, how much education did we get on dementia in school? Really, we didn't get enough. When I got diagnosed with dementia, the amount I know now about dementia to what I knew as a nurse is totally different.
The other big thing I feel is that the doctors are afraid of the diagnosis. They don't want to be the one to put that pin on your shoulder that says you have Alzheimer's. They're afraid of it. I think part of that is that they don't understand it.
We have to really look at this properly. How long have they been researching diabetes and cancer, and how long have they been researching dementia? Dementia is in its infancy. There is a lot to be learned. I feel they need to learn from us because by the time somebody got diagnosed, even 10, 15 years ago, they were already mid to late stage. They need to talk us to in the early stages and find out from us what's going on in our heads, how this feels and how that feels. Then they will be better able to understand it and better able to cope with dealing with it.
It's not just with us. It's with everything. My biggest thing is teaching my own kids and my own grandchildren about this disease, and what's happening with me, what's going on with it. Even my young grandchildren, who are two and three, they get taught about the disease process because we are not going to have a country that accepts dementia until we have a whole generation that has been taught about it, and if we don't start young we're never going to get there.
The other thing that really scares me, and I may be going off on a different tangent right now and I apologize, but it's our brains. We exercise our brains every day. When I went to school, calculators weren't allowed in that classroom. I exercised my brain. I used to do math in my head. I learned cursive writing. Nowadays, you go into any child's school and how do they do their math? They don't exercise their brains, so they're not making those neural pathways, so what's going to happen to them when they hit my age and they get dementia?
The Chair: Maybe there's not going to be anything to lose.
Ms. Fehr: Exactly.
Ms. Kraayenhof: We both worked in neurodegeneration, and it's a little scary when we see what's happening to little kids. It would be just so great if from kindergarten on we were able to go to the classroom, that they had a day set aside for dementia day, where the older ones went into the gym and listened to a talk, and we could go to kindergarten and sit in a circle with them and say, "Does your grandma forget things sometimes? How about your mom and dad?''
They could start by saying their names and they could say their names and I could say, "You know what, I've already forgotten your name.'' That's what happens with dementia. Teach them.
We're out there in the community. We're not all just little grandmas sitting in a chair.
Having them have the word "dementia'' not as a dirty word from day one, by the time they get dementia or their parents have dementia they're prepared. It's not a shock. They'll know what to do. Wouldn't that be awesome?
The Chair: Thank you.
Ms. Wighton: In regard to the health care system question, I think there are a number of different things that we can suggest to consider.
First, if we think about the ethical framework of CRPD, which is what Canada is trying to move forward with people with disabilities, so therefore people with dementia fall in that automatically, and then when you put that around the health care system and the expectations such as ethical care and what does ethical care mean. Then you're almost driving what is needed simply by following the framework.
As we all know, there's definitely a lack of education and understanding. This results in stigma, et cetera. So within that framework we know that it's the right of people with dementia to have properly trained people, and properly trained people when they need them and where they need them. I think it's a great way to look at what is needed for the Canadian health care system, in particular ethical training.
Every day during the journey of someone who has dementia, there's going to be times where there will be tough ethical decisions. Do the medical community and all supporters understand the ethics involved in this, such as making decisions regarding someone's finances? Maybe the substitution has happened too soon. We know that is wrong.
Again, going back to a framework, it's internationally approved. It's expected of Canada. To help us guide it, I think our health care system will become more ethical. That's what we're striving for, where we want to drive at.
Mr. Heibein: This is out of the area that I've had any involvement with. I'll keep quiet.
Senator Seidman: Thank you.
The Chair: Mary Beth, at the beginning you said a number of things.
We've had a minor electrical interference in the room. I'm trying to focus my thoughts on the question. It's obviously affected some of my synapsis.
You used the example, if you have a stroke, there's immediately a health care team trained to respond. They are aware of what you will face and they set up a program for rehabilitation and support. That's something that you think is needed in this area.
We might speculate on some of the things that would go into that, what the team, the support group should have available to you the minute the diagnosis is made. I'd like to hear from you. You've obviously given it some thought.
What are some of the support and knowledge that would needed for the support team to achieve what you'd be looking for in the area of dementia, based on your own experience?
Ms. Wighton: Based on my own experience, there are a number of things right off the top of my head.
First is the educational piece. Educating myself but also my family, and in particular my care partner. It's the financial constraints and challenges that we have in front of us. It's the legality of talking about end-of-life possibilities. If I wanted to have a psychiatrist or some kind of support person to mentally talk with, that should be on my list of things that's needed.
What to do with employment? If I am still employed or not employed, what will that look like? How do I work with that particular company? Do I have to visit HR? What's my legal right again within that? Do I have to tell them I have dementia?
The other component was the loss of my license. It was done immediately. There needs to be some part of the team that understands driving, and the impact of that. How do we test for people who go through this? Let's see if you're still capable versus the current automatic withdrawal.
It's really a team that's not just medically focused, but it's socially focused as well. That's the big thing. Right now it's so medically focused. What kind of medication do I need? That's the big thing. Do I have the right medication? If I have certain challenges, let's up or down the medication.
Who has talked to me about different types of sports? I've started to do lawn bowling. No one said that's a great way for you to be engaged socially. We know any type of physical activity is a good thing for health, and obviously learning something is good for mental health.
You can see the team affects all components of my life. If we can figure out how we can do that, the experience of the diagnosis and the journey of someone who has dementia, we can really change right off the top.
The Chair: I've written down a number of aspects that you've identified here, specific characteristics.
Bea's illustration of the handy bus access or denial thereof was a perfect example. In the community, not only is there a support group for dementia who have worked out a lot of the issues they will face, but there was nobody to take on the issue of showing what to me is simply an obvious situation. Handy bus is there because it's needed for people for transport. The fact that you can walk is only part of the equation.
I'll use the stroke analogy again. The identification of what is needed to help the individual participate and to get healthier and stronger in the situation is important.
Ms. Wighton: I'm listening.
The Chair: We have been hearing about various community structures in which dementia is identified as an important part of a community approach. Indeed, the United Kingdom is going to build 10 new cities that have identified issues that range from youth through to end-of-life issues, including dementia. They've specifically looked at social issues like obesity and so on.
The communities are going to be built, so there's actual activity and movement in the community, and support for Alzheimer's, dementia and other issues. There are approaches, on a much more limited basis, that attempt to provide a community in which the things you have identified as being needed are recognized as being part of the way you will perform in that community.
In your experience, have you come across examples where communities are getting it right? Nothing is perfect yet, but they're getting it right?
Ms. Wighton: There's an excellent example in the Netherlands where two nurses decided that they didn't want to place their mom in long-term care. They asked what would long-term care look like. All of a sudden it's one of the best examples of what a community can do to help support people with dementia. It's a village of people with dementia. It's set up as a town. It's a smaller community with smaller rooms that actually have doors, so you're not sharing your space with someone else.
I forgot to mention one really important thing, if I can just go back to the other list of people that I would need to have at the time of my diagnosis.
Something that's often overlooked is the spiritual and religious aspect of someone's welfare, especially as you go through the longer diagnosis. It's not even discussed in society. I think it really warrants a place in the discussion, regardless of whether someone is spiritual or religious. That piece of them has to be acknowledged, and it has to be part of the plan.
I would say the village in the Netherlands is top-notch, and I would love to live there if I had to.
The Chair: That's an excellent example. I'm going to go to each of you in turn. Ms. Kraayenhof.
Ms. Kraayenhof: She took the words right out of my mouth.
The Chair: That's the one you would choose.
Ms. Kraayenhof: I visited that one through the Internet. They even have little shops where a person can go and get their groceries. It's totally geared toward dementia. You can walk outside, and if you want to ride a bike a nurse will make sure you won't fall. It is top-notch.
Ms. Fehr: I'm going to go with the rest of the group.
The Chair: That sounds like a pretty strong endorsement. We have heard a little bit about it, but this is a remarkable endorsement of it, and really, if you think about it, it's a peer group. You are in an environment that is safe and recognized.
Ms. Kraayenhof: If you could do that here, it would be awesome.
The Chair: We're going to try.
Ms. Kraayenhof: Can we have first dibs?
Mr. Heibein: There are a couple of extremely good features about this particular place we're talking about in the Netherlands. It's a gated community, first of all, and it's set on a large acreage. There are many paths that they can walk or bicycle on, and they go in circles. You can't get lost. They bring you back.
The Chair: We've been hearing a lot of about the community concept. We might like it, but it might not be right. Your endorsement of it is obviously what we would hope for.
Ms. Fehr: That type of community keeps the person engaged. It keeps them moving forward, and that's what we want and that's what we need in order to continue on.
The Chair: Absolutely. You've all illustrated that here today. Bill, you laid it out and identified that as part of what has helped you so much.
Mr. Heibein: The only thing I would comment on, personally, is there doesn't appear to be any place to stable my horse. Apart from that, we're okay.
The Chair: We'll make a note of that. Stables needed.
I'm going to go to the second round now.
Senator Eggleton: Your response to the chair's question with respect to the facility in the Netherlands reminds me of the concept of continuum of care, where people who, at different stages, can live according to the stage that they can best function in and get additional support as they need it. It is a community; it could be within a building or in a bigger complex, I suppose, with paths that go in circles.
Have you any thoughts about continuum of care, and what might be included in that?
Ms. Wighton: With respect to the continuum of care, one of the things that we really need to do is take a step back from long-term care and look at how we can live in our homes. The more we move someone who has dementia from one physical building to another and then another, all that we're doing is helping to move dementia along more quickly.
It's not necessarily a good thing for us to be moved again and again, versus aging in our homes. Where is the strategy by which we can bring people in to help us age in our homes? Simple repairs to our bathroom, for instance, to make it more accessible, are a lot cheaper than making us move into some type of long-term care.
When we talk about the continuum, I would like to continue as long as I possibly can, as most people with dementia would, in my home.
If anything, my strongest suggestion would be to ask how we would do that.
Senator Eggleton: Everybody seems to be nodding their heads at the end of the table, so I think they all agree with you.
Talking about the Netherlands, there's another interesting little concept that has come from there, on the social side of things, called memory cafés. I think we heard not long ago they're doing them down in New Brunswick.
Ms. Kraayenhof: They are wonderful. I'm from the Niagara area, and our chapter has started four of them, in Thorold, Welland, St. Catharines and Grimsby. Oh, I got them all. Yes!
They're fabulous. We help the society run them, and we've chosen a folder with paperwork in it to hand out to the newbies who come. We literally invite anyone in the community who has memory issues and their caregivers to come. It's worked fabulously. What a wonderful life.
But again, there are transportation issues. I can't go to them because I don't have a way to get there. That is an issue, because Canada has such great distances, even in the city. The Niagara chapter was doing a wonderful art program with us that we could take, if we liked, but it was in St. Catharines. Well, I'm from Welland, and I have no way to get there. I couldn't partake. It costs $60 to get there and back. I can't do it.
I was thinking one night when I couldn't sleep, which is often, that kids who have special needs are taxied all over the place to go to special schools at no cost. For those of us who have dementia and need this stimulation and these programs, wouldn't it be awesome if we were able to access this type of transportation and go to these places? It's a thought.
Senator Eggleton: Anybody else on memory cafés? They sound like a good idea, generally.
The Chair: Mary Beth would like to come back in.
Ms. Wighton: I have a comment about transportation. Going back to the CRPD, it is the right of people with dementia to have access to transportation that is affordable. This is not happening right now, and Bea is the obvious example here.
If we are limiting people to be socially engaged in things like memory cafés, we have to come back, again, to our rights and the disability rights for many other people. We have become marginalized, so I would ask senators to please consider transportation in your report.
Senator Eggleton: I think you make an excellent point. We've also heard about memory clinics. These are largely for diagnosis of early-stage dementia, particularly a system developed by a Dr. Lee. Apparently, there are a number of them in Ontario. Do you have any knowledge about them and how well they work or don't work?
Ms. Fehr: I do have some knowledge of them. Personally, they are better than going to a regular family doctor and then to a gerontologist. In the clinic you have a social worker and a nurse practitioner, so you're getting more support in a memory clinic. I'm not saying you're getting 100 per cent the right type of support, but you're getting more input and more information. In the beginning, knowledge is key. You need all the right information to plan what's happening for the rest of your life.
One of my key concerns is that Ontario is so big, communities have no specialists; they have no memory clinics. How can we best support these people in Kakabeka Falls or out Mary Beth's way? They don't have the ability, like we do here in Ottawa or in Toronto, to get to these clinics. That's where these big clinics are all located.
How can we best get them the care they need? That's my big concern.
Senator Eggleton: In rural areas, yes.
Ms. Fehr: We don't have memory clinics even in Hamilton. That's not a small area, but in the memory clinic you're getting more care than most people get because you're getting a variety.
A lot of times it falls onto the back of the Alzheimer Society because they're the next step. You're never told to go there. You get a diagnosis, and when you get your diagnosis, I will honestly say, you get prescribed disengagement. That is what you're prescribed. You're prescribed disengagement. That is totally wrong. You need all the stimuli you can get. The more stimulated you are and the more engaged you are, the longer you're going to fight this disease and the better off you're going to be.
These memory clinics are great, but if we don't have them, people end up falling on to the Alzheimer Society, and not every Alzheimer Society offers the same things.
In our local area, we have the First Steps and Next Steps. I personally go out and speak to every First Steps program because I want those people to know that you've just got a bad diagnosis. It's been prescribed, disengagement. It doesn't have to be. Look, I have come past that point. I'm out and I'm doing, and you can, too, but you have to choose to.
When you first get diagnosed, I will be the first one to say that you go through a depression. You get no support through that whatsoever. When you go to a memory clinic you may get that because they have a social worker. These are all things that need to be looked at and addressed.
Senator Raine: I think the questions have been great. Thank you all very much for being here. It's wonderful that you're here. This is probably the most valuable testimony that we've had. I want to ask you all two different questions.
There are two things that are a common thread in my life, and that is diet and exercise. Are you able to get help with recommendations and tracking how your diet is doing and how your exercise is going to help you to keep going?
Ms. Fehr: No. With the health care system, once you're diagnosed, you don't. That is why we need to put that in play in some of these clinics. We all know diet is absolutely essential. The other thing we know is activity is essential. People are prescribed disengagement. They're sent home to sit in that chair and do nothing. We need to keep them engaged and active. That's not happening.
Maybe we need a physiotherapist assigned to them in the early stages because a lot goes on in those early stages. You need somebody, even maybe a trainer, to keep them motivated and keep them moving. That's going to delay the downfall of this disease, and it is going to help them live longer and live well with this disease and help keep them out of the nursing homes longer.
Ms. Wighton: I don't even have a doctor. In my particular area, which is Southampton, Ontario, my doctor from Kitchener passed away, and I am now on a waiting list with about 3,200 other people in my area to get a doctor. I have to go to emergency to get any kind of assistance.
Regarding diet and exercise, when I did have a doctor, nothing was said about diet and exercise.
The particular type of dementia that I have is called frontotemporal dementia. This means this part of my brain here in the front and the sides of your brain are impacted.
What all that means is that I love sugar. My ability to even want to eat healthy food — I don't really like it anymore. Give me caramels and cereal. It's a very challenging exercise for my family to try and get me to eat good and healthy food.
Due to the medication that I take, I probably have put on 30 to 40 pounds — just from medication alone. When you're looking at exercise, that's 30 or 40 pounds that I'm not going to be able to take off, and that does have an impact on my health.
The Chair: We wrote an entire study on obesity and the issues are ones that you're identifying. We can certainly relate to that, although of all the things you've talked about, not having a family doctor is not one area where you, as dementia patients, are being discriminated against. It's a fairly common problem, unfortunately, in our society. This is an example of why it's such a critical problem.
Bill, I'm going to turn to you. You can tell us about physical activity.
Mr. Heibein: Up until the time I was diagnosed, we had the farm and we were breeding horses. I was what I would consider a full-time weekend farmer. During the week, my wife did the feedings in the morning. I would do the initial feeding before I headed to work, but she did the things in the barn all through the day and then I would take over when I got home at night again.
At the time I was diagnosed and took retirement, right away I suddenly became a seven-days-a-week farmer. I am outside minimum four hours a day. It doesn't matter how cold or how hot it is, I'm outside four hours a day. During haying season, I put in 12- to 14-hour days regularly.
To give you an example, this morning I was up at 6 a.m. in order to feed the horses. I am 75. I threw two or three 60- pound hay bales down out of the loft this morning, headed to the airport and so forth.
In addition, we heat with wood. Our farm is 150 acres. I've got my own wood lot. We cut, skid, bring out, split, dry — I do all my own wood for the winter.
From a physical standpoint, I am probably more active than most people would be at this stage of the game.
As far as the food and diet is concerned, I like meat, potatoes and vegetables. If it says "health food,'' I don't like it.
Senator Raine: But you're eating healthy food.
Mr. Heibein: But it is not what is currently considered to be healthy. I love yogurt if it's frozen with flavours.
The Chair: In actual fact, the current studies indicate that primary foods freshly cooked are among the best. It's moderation in all things that is the issue.
Ms. Fehr: The only other thing I want to point out with regard to what was asked is about the medications we take. They have different effects on each and every one of us. Ms. Wighton may have gained 30 pounds, but I think she took my 30 pounds because I lost it. In doing that, I've lost so much muscle mass. When I take my medication, I have no appetite. You can put food in front of me and I'll take a couple of bites. Plus, I have a swallowing disorder with it now. I have difficulty swallowing. It's getting the food in.
Senator Raine: I will just ask one thing. Often if you're diagnosed early, probably one of the best things to do, especially maybe for a woman in a city, is to get a big dog and walk the dog.
Have you had experience with people with dementia and animals as pets?
Ms. Wighton: Yes. I have a wonderful brown lab named Shiloh. Pet therapy, just like music therapy, plays a critical role in how I feel every single day. I have to take care of the dog. I have to get him outside. I take him for walks even though his hips are getting bad. It's just the emotional well-being that my big guy brings to me. That's medicine in itself. He doesn't walk far, but we try.
Ms. Kraayenhof: I have a gorgeous rescue cat. What Ms. Wighton said is true — you build a connection with a pet. If we ever get this village built that we want first dibs on, it would be awesome if you could also have pets there.
Senator Stewart Olsen: Actually, pet therapy was my question, so I thank you all.
The Chair: Something was said earlier that I want to emphasize. This set of hearings has been a remarkable experience for us. The thing that has struck me about it is that because we have examined so many aspects, perhaps from a clinical point of view with experts and so on up to this point, it has put us in a position to interpret what you're saying in a far better way. In other words, we have an enormous amount of background information to which you have added the complete experience. You bring it all together — the context, the application and the things that are missing.
I'm still having a hard time, Ms. Kraayenhof, trying to figure out why it wasn't a no-brainer that you needed access to the bus and that walking 100 feet was the only bureaucratic requirement. We see a lot of bureaucracy around here.
Ms. Kraayenhof: That beat all, didn't it?
The Chair: It's certainly comparable to some of the best we encounter.
Senator Raine: Where was that?
Ms. Kraayenhof: It was in Welland, Ontario.
Senator Raine: Write that down.
Ms. Kraayenhof: We go through these things almost every day; and they pile up. We get frustrated when dementia strategies are started and we're not even asked to contribute. We should be front and centre at the table doing it with you. That's what we feel is best.
The Chair: You're absolutely right. We have heard you loud and clear today. Again, I have to say that with regard to bureaucracy interfering in our daily lives, you are not being discriminated against; but the impact is obvious. We've studied a lot of these impacts over time.
On behalf of the committee, I want to thank all of you for being here with us in person and, Ms. Wighton, from a distance. I can't say enough as to how you have clarified it for us. Your examples have illustrated many of the facets that are critical.
I thank my colleagues, and with that, I declare the meeting adjourned.
(The committee adjourned.)