Whether you’re new to caregiving or a veteran, there are still things to learn about the Canadian healthcare system. This series from Alz Live provides a roadmap. This is part one of an eight part series.
In Canada, we have a single-payer health care system, a great achievement.
However, it’s not a market-driven system; therefore it’s not as responsive as it should be.
The Canadian numbers of those with Alzheimer’s will climb. Here’s what it’s like for those who entered the system in the early days of disease awareness.
The gateway to ‘The New Normal’
Jeff Willis’s wife of more than 20 years thought he was just stressed out. The couple and their two children had recently moved from Alberta to Ontario and bought a new home. Jeff, then an artillery officer with the Canadian Armed Forces, was starting a new job.
Some absentmindedness, a degree of distraction and forgetfulness would be in order. Jeff’s new co-workers in Kingston, however, suspected a deeper problem.
Jeff would be late for meetings or miss them altogether. He failed, three times, a standard exam required for Canadian Armed Forces employees “which is so not him,” says Vicky, his wife, from their home in Gananoque, Ont.
“Jeff has three degrees, including a masters in history. For him to fail and shrug it off seemed odd, but we were moving and trying to get settled…” she says, her voice trailing off as if she is still trying to make sense of all that has happened in the past few years.
Jeff, then 47, was dispatched to a doctor on base, and from there, the process (cognitive testing; visits with a specialist) moved quickly. A neurologist in Ottawa made the diagnosis: frontotemporal dementia, or FTD.
Once called “Pick’s disease,” FTD usually strikes people in their 50s and 60s and accounts for 10 to 15 percent of all dementia cases. It’s a form of cell damage that causes the brain to shrink in the areas behind the forehead and the ears, regions that control speech, movement, planning and judgment.
There is no cure or drug treatment for FTD and, on average, people survive six to eight years after diagnosis. Jeff is 52 now, he can no longer speak, and he was diagnosed five years ago.
Once the military had a diagnosis and a reason to release him, they did release him.
FTD is just one of the many diseases that cause dementia
Dementia is a general term for a decline in mental ability severe enough to interfere with daily life. Alzheimer’s is the most common disease to cause dementia, and has become a chronic public health issue in Canada, with the aging of the baby boomer population.
People can live for 20 years after a diagnosis of Alzheimer’s disease, but, on average, people live four to eight years after the onset of symptoms.
As those years pass and function declines, care needs in general – and health care needs in particular – will increase.
For Jeff, military service brought with it health benefits beyond those available to most Canadian employees, like prescription drugs, a few pairs of glasses and dental exams. It also brought quick access to many levels of care. You would think that would be a good thing, but “it was and it wasn’t,” says Vicky.
“Once the military had a diagnosis and a reason to release him, they did release him and we were stuck by ourselves,” she says. “We had to get into the civilian end of it.”
The civilian end, meaning Canada’s lauded and lamented universal health care system, has many enviable benefits compared to programs in wealthier nations. But quick access and responsive care are not chief among its hallmarks.
Searching for the Right Care
“Let me be very clear: I’m a big advocate of a single-payer system, a big advocate of no one having to mortgage their house if their child needs care,” says Francesca Grosso, co-author of Navigating Canada’s Health Care, A User Guide to Getting the Care You Need. “But it’s not a market-driven system; therefore the system is not as responsive as it should be.”
What does that mean to those of us searching for specialists, referrals, second opinions, community services or any of the other resources caregivers need for loved ones diagnosed with dementia or Alzheimer’s?
Like Vicky, we are, to a certain extent, on our own. “That’s why it’s so important for us to be stewards of our patient journey to the extent that we can,” says Grosso. “We are the only constant.”
Vicky quit her job to be Jeff’s full-time caregiver and won a 2014 Heart of Home Care Award for that dedication and love.
But she was rudderless at the start.
“It’s all of a sudden thrown at you that your husband can’t drive anymore. He’s not going to be able to work. He can’t communicate…he talks but doesn’t necessarily process a conversation. If you ask a question, he’ll give you a bizarre answer or no answer,” Vicky says, detailing all the ways Jeff has been affected by the disease.
“He wanders, so he’s constantly on the move. His judgment in eating is gone. If you give him something, he’ll eat and eat and eat without any awareness of when he’s full. He’s incontinent. He’s cold all the time, his nervous system seems to be lacking something….”
Vicky’s first tentative call to her Ontario Community Care Access Centre, which assists people in need of a host of services (including admission into long-term care homes), was less than helpful. “They said, ‘What do you need?’ and I had no idea,” she remembers. “I just said, ‘I’m not sure’ and the woman said, ‘Phone back when you know what you want.’”
She’s quiet for a long moment before adding: “I was put off.”
Her first vital caregiver supports came not from the health-care system directly, but from its not-for-profit offshoots.
Vicky reached out to the Alzheimer Society of Ontario, which led to support groups in her area (where she learned that the response she got from the CCAC is common). The Red Cross provided a personal support worker for three hours a week.
After about half a year, Vicky wasn’t a novice caregiver and had a clearer sense of what the CCAC could do for her and Jeff. She needed to investigate long-term care facilities, she needed more at-home help, and she wanted counseling, for starters. When she called back, “they were a bit more accommodating,” she remembers.
Jeff recently moved into long-term care, a decision Vicky describes as one of the toughest she’s ever made. She’s not the primary caregiver anymore, but she spends hours every day with Jeff and she has a new role.
“I’m his advocate now,” she says. “It’s up to me to make sure he gets the care he needs, that he’s being well taken care of.”
Hope For The Future: Clinical Trials
Doctors are constantly evaluating new interventions for treating AD and dementia. But finding out about these clinical trials isn’t always easy.
If your doctor is affiliated with a teaching hospital or a university, he or she may be able to advise you of ongoing studies, says Dr. Chambers. But many family physicians won’t have access to that kind of knowledge. “If you want to participate in a clinical trial you may have to do a little research on your own,” he says. Possible sources of information include:
- The ASC office in your area – particularly those with a First Link program – may have knowledge of ongoing clinical trials. Or try doing an Internet search for “clinical trials” along with your province name.
- Memory clinics often either conduct or know of ongoing studies. You’ll need a referral from your doctor.
- The Consortium of Canadian Centres for Clinical Cognitive Research website has information on clinical trials across Canada.
- Trial Match can pair you up with clinical trials in the U.S.
- ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world.
- Clinical Study Connect will notify you about clinical trials, including new treatments and the latest clinical research studies.
Once you have an idea of what’s out there, you’ll need to “be a good consumer” in order to determine the risks and rewards of participating, says Dr. Chambers. Check out this fact sheet by U.S.-based National Institute on Aging on participating in clinical trials.
Our System; Our Future
Annually, Canada spends nearly 12 percent of GDP on health care; only four countries spend more than us (the U.S., Germany, France and the Netherlands)
Still, as well funded as it is, the system often requires very long wait times; coverage from province to province is inconsistent; and stories of Canadians going abroad for necessary treatments are not uncommon.
“Our universally funded, portable health-care system is not universal, nor is it portable,” says Grosso. As effective and enviable as it may be, the system is opaque, tough for lay people to understand and navigate successfully. So, we’ve designed this eight-part series specifically for the caregiver who needs help for a loved one diagnosed with dementia. This is your roadmap.