ADVOCACY I LIFE LESSONS
Patients want role in shaping Alzheimer’s policies.
AT A SPECIAL G8 health summit in December where Canada was the only member nation without a national strategy on dementia, federal Health Minister Rona Ambrose attributed the shortcoming to fragmented provincial health systems.
Meanwhile, as bureaucrats mull jurisdiction, special groups of people in Waterloo Region and elsewhere are gearing up to advocate for themselves. They know what’s needed not only in 2031, when 1.4 million Canadians will suffer some form of dementia, but right now because they are today’s dementia patients.
They’ve suffered through the drawn-out diagnostic process, the shock of hearing they have a progressive, incurable condition and the challenge of getting information and support, including financial aid.
What is also known is the vital role Canada’s Alzheimer Society plays in national advocacy and, locally, in linking patients with the Kenneth G. Murray Alzheimer Research and Education Program at the University of Waterloo. Rather than researching biomedical aspects of dementia, the Murray program, now in its 21st year, focuses on what dementia patients — whom they call partners — need to live as well as they can.
It is also deeply involved in public education, starting with policy-makers. “We can read between the lines that policies are going to affect persons with dementia, but nothing says clearly that (patients) need to be involved,” says Lisa Loiselle, associate director of research with the Murray program.
“How can you have a national policy that offers support for carers, but nothing for people with dementia themselves? Although people immediately think end-of-life when they hear the word Alzheimer, (patients) still have capacity and skills — and the desire to use them.”
One person working with the program is Mary Beth Wighton, 47, of Kitchener, who was diagnosed with frontotemporal dementia in 2012, four years after she began seeking an explanation for her new mood swings and poor financial decisions. Wighton is a member of the new Partnerships in Dementia Care Alliance, created by the Murray project to research and influence a national dementia policy.
“People with dementia will be authentic partners,” Wighton says. “(The Murray Alzheimer Research and Education Program) does a really good job of helping partners see they still have lots of strengths. It’s not just about losses. They recognize new or different abilities you’re growing into.”
A round-table interview at home with Wighton, her partner of 12 years Dawn Baxter, their 19-year-old daughter Brianna and the Murray program’s Loiselle revealed the depth of frustration patients and families endure in their search for answers and help. Q: Describe the start of your problems. Wighton: I realized concepts were becoming difficult for me to understand. I’d say, “I just don’t feel as smart as I used to.” I began by seeing my family doctor who thought it might be depression or marriage problems. My first checkup was in September 2008. I was there three hours, and then I started counselling. I did
have depression, then I came out of it, but (long-term disability insurance) insisted on continued counselling, and then we started to see the other symptoms.
Q: Why is it so difficult to diagnose dementia?
Baxter: People have to listen to caregivers more. We keep a journal for a reason. Too often they want to shuffle us off. The diagnosis process is worse in younger people such as Mary Beth who don’t fit the model, and there are fewer resources, less support for them. We were lucky that our family doctor took it seriously and looked outside the norm, began to think maybe depression was a symptom, not the cause of her problems. He didn’t know her well at the beginning; until then he’d just seen her once a year. Wighton: Now we have his cellphone number. Baxter: At some point someone suggested a neurologist, and Mary Beth saw Dr. Dwight Stewart who put us on the right course to cognitive impairment. Wighton: There were so many tests, so many appointments. The long-term disability insurer was calling almost weekly to ask “What else have you done?” Twice they cut off the cheques without warning because they didn’t get proper documentation from a doctor by their deadline.
Loiselle: Diagnosis of dementia is a process of elimination, but there is ageism involved, too. That’s what delays the insurance. Wighton: We know other people who were dropped from insurance and that causes terrible financial problems. That’s why a proper diagnosis is so important. Q: How did you finally hear the diagnosis? Baxter: We got it from a geriatrician who also told us she didn’t know anything about frontotemporal dementia. She wrote FTD on a pamphlet, handed it to us and told us to call the Alzheimer Society. I said, “Is there a pill Mary Beth can take?” The answer was no, there’s no treatment, it’s fatal, go home and get your affairs in >>
>> order. We went home with a pamphlet.
Wighton: Imagine all the things you’re taking in with that diagnosis: dementia and there’s nothing I can do about it, it’s terminal and then, “by the way, you can’t drive” and I’ve always been the main driver. We didn’t know what to expect, what to ask or what’s out there for us. I’m too young for a lot of the programs. Q: Where did you turn for help? Wighton: Dawn can be a mama bear. She’s been proactive in getting us help.
Baxter: The Community Care Access Centre was really good. They sent someone to do an assessment and provided three appointments with a social worker. We used them for Brianna (who became a target for Wighton’s uncharacteristic physical aggression). Also the Alzheimer Society was good.
Wighton: But there has to be help sooner. It’s usually a couple of weeks before CCAC calls. The Alzheimer Society took a week to call back.
Baxter: I was sleeping on the couch, holding her hands, sobbing, afraid she wouldn’t wake up the next morning. Mary Beth went to anger, I went to sadness, panic, disbelief. Eventually anger set in for me, too. Once I read about the symptoms (of fronto-temporal dementia),I wondered how they missed it for so long. Q: How would you change the process? Wighton: 1. Improve the diagnosis experience. You’re receiving life-changing information, yet the family is expected to walk away with so little information.
2. Apply the correct types of testing. I kept being asked to draw a clock (an exercise in the Mini Mental State Exam, which is more relevant to an Alzheimer diagnosis). And there needs to be less time between assessments. We need more geriatricians, and we need family doctors to receive more training in dementia.
Loiselle: Memory clinics could do some legwork to fill the time spent waiting for an appointment with a geriatrician. Wighton: 3. Driving. If I’m not a safe driver, I truly believe I shouldn’t drive. But I’ve been driving since I was 17. If I’d been working, it would have been a real problem, but nobody considered how or if I’d continue to work. My dad got his licence renewed at 85; I was so jealous of him! A lot of carers and patients struggle over whether they should drive. We need to make sure we have safe drivers out there, and I’m open to how that happens.
4. Meaningful groups. The CCAC introduced me to the Murray program at Waterloo. They do specialized work such as the By Us For Us guides — information on living well with dementia which I know is tried and true.
Through CCAC, the name Brenda Hounam came up. When I started to read about her, a busy advocate and educator who has dementia, that connected with me. It gave me
something positive to do every day.
Loiselle: It’s word of mouth for (the Murray program) to learn of people like Brenda, who was diagnosed at 52, and Mary Beth. We have been lucky to have them make a difference for others, to show that with the right support they can contribute to life and feel good about themselves. (The Murray Alzheimer Research and Education Program) doesn’t offer programs and services, but we engage people with dementia and offer them the opportunity to meet other advocates. Wighton: 5. Provide better support and education for staff in long-term care facilities. We need more training for front-line staff, everyone from nurses to janitors. Q: Which levels of government seem interested? Loiselle: There’s been some uptake locally with the Alzheimer Society to push the Ontario government for a provincial strategy. The Alzheimer Society of Canada is also pushing nationally for a strategy, but we need a voice there. They have to hear from Mary Beth and her peers who are living with it every day.
Wighton: Did you know there’s no grant for accessibility modifications if your house is worth $325,000 or more? That’s not a lot of money anymore. A lot of families wouldn’t quality.
What our family hopes is that a dialogue starts. When you take the time to reflect, we’re really fortunate. We love each other unconditionally. We want people to feed on our strength. We don’t get caught up in the stigma.
We (people with dementia) have to be at the table. It’s not having someone else tell us what makes sense, it’s working with us to make sense. I made my own video and posted it on my very own YouTube channel. You have to want things from yourself — to be a good mother, partner, daughter, sister. I still want to be loved.