Research Profile - Dealing With Dementia in Rural Communities
The Rural and Remote Memory Clinic
Dr. Debra Morgan
Travelling to see specialists in Saskatoon from her home in Prince Albert, Saskatchewan, is stressful and difficult for Donna Dalziel. That's because she must stop constantly during the 90-minute journey to attend to the needs of her husband, Don, who has frontotemporal dementia.
Even packing for the trip is tough. Don removes everything from her suitcase as fast as Donna puts it inside. He turns the portable DVD player off as they're travelling and forgets how to turn it on, so she has to pull over to get it going for him. He needs to urinate, so she must stop to find him someplace to pee. Once, when she almost ran out of gas, she was close to panic. It was too cold for Don to walk, and she couldn't leave him alone in the car.
"By the time we get to the appointment, I'm exhausted," says Donna. But the Dalziels have to travel to access the medical treatment they need, because like other Canadians living in rural and remote communities, they have few resources in their own community devoted to dementia.
At a Glance
Who: Dr. Debra Morgan, Applied Chair in Health Services and Policy Research funded by CIHR and the Saskatchewan Health Research Foundation, Professor at the Canadian Centre for Health and Safety in Agriculture, University of Saskatchewan.
Issue: By 2040, 1.1 million Canadians are expected to be living with dementia, placing an enormous burden on their caregivers and the health-care system. The stress, difficulty and cost of travelling to access services are among the biggest challenges facing people who live in rural and remote communities.
Approach: In Saskatoon, an interdisciplinary team at the Rural and Remote Memory Clinic works together so patients and families get all tests and appointments required for an accurate diagnosis and treatment plan in a single day. Pre-clinic assessments and post-clinic follow-ups are conducted via Saskatchewan's telehealth network.
Impact: This approach saves patients and families, on average, multiple 425-kilometre roundtrip visits to specialists. The Clinic concentrates expertise in uncommon forms of dementia, which are often difficult to diagnose and manage. Patients and families report high satisfaction with the mix of clinic visits and telehealth appointments.
By 2040, according to the Alzheimer's Society of Canada, more than 1 million Canadians will be living with some form of dementia – about 250,000 of them in rural areas. That's why the Rural and Remote Memory Clinic in Saskatoon was created.
The clinic, associated with the University of Saskatchewan, provides a kind of one-stop shopping for people with dementia and their families. In a single day, patients whose caregivers suspect that dementia is the cause of their problems can have a CT scan and other tests and see all the specialists required to produce a solid diagnosis and a treatment plan.
The clinic's interdisciplinary team consists of a research nurse coordinator, neurologists, physical therapists, and a neuropsychology team – people it might otherwise take months or even years for patients and their families to see during multiple appointments. By the end of their day-long visit, people like the Dalziels meet the entire team and hear their test results.
The clinic reduces the amount of time families spend travelling to appointments, and the stress, cost and difficulty that comes with all that travel. In addition to the day-long session, the clinic uses Saskatchewan's telehealth system at local hospitals to conduct pre-clinic assessments and post-visit follow-ups. Those 'visits' take place via cameras that link participants to each other over television screens.
"One of our goals was to increase access to early assessments and diagnosis, primarily for early onset, early stage, and atypical dementias," says Dr. Debra Morgan.
But these dementias generally strike people in mid-life, and progress differently than Alzheimer's. Frontotemporal dementia, for example, affects the frontal and temporal lobes of the brain that control reasoning, judgment and other "executive functions," as well as the speech centres. Alzheimer's, on the other hand, affects the brain more generally.
Without a multidisciplinary team as well as access to neuroimaging and memory tests, it would be difficult for a local family doctor to make this diagnosis, says Dr. Morgan.
Although getting the diagnosis can be overwhelming, it's important for people and their caregivers to know what they face, especially if patients are still capable of participating in decision making about their future. That's one of the goals of the Rural and Remote Memory Clinic.
"Many (patients and families) describe being in a kind of limbo, waiting to know what's going on. They want answers. Then they can start planning and getting on with things," Dr. Morgan says.
Once a family gets a diagnosis, they return home but stay in touch with the doctors and staff at the clinic via scheduled telehealth appointments, phone calls and occasional visits to the clinic. Combining the clinic visits with the telehealth appointments reassures people, says Dr. Morgan, rather than relying only on videoconferencing.
"It can be scary for people to come in and admit they are having some problems with their memory," Dr. Morgan says. "When they come here, they'll say, 'I recognize you from the TV.' The more we can do to put them at ease and make them comfortable, I think that's helpful to them and their family members."
The combination of the day-long clinic and the telehealth component of this treatment approach has been popular with patients and their families, says Dr. Morgan. Overall, 85% of patients and 92% of caregivers that Morgan and her team have served at the clinic say they are "comfortable" or "very comfortable" during telehealth appointments.
Dr. Morgan believes the Rural and Remote Memory Clinic is a model that could serve rural residents suffering from any chronic health condition that is complex and difficult to diagnose. She hopes other health-care professionals will consider setting up similar clinics to serve rural families.
"What you need is interested professionals who are co-located, who could do it," she says.
"The bottom line for us is that without the clinic, we would have had no place to turn. And when you're north of nowhere, it's nice to know which direction to go for help."
– Heather Dyck, whose parents were referred to the Rural and Remote Memory Clinic
Support from afar
Donna Dalziel knew there was something seriously wrong with her husband Don the day the 57-year-old businessman painted the entire screen door of their cabin – including the mesh screen.
A proficient handyman, Dalziel didn't understand what was wrong with coating the screen with paint. When Donna explained it to him, he took a pin and poked through all the little holes to let the breeze through.
“His judgment was way off,” says Dalziel. “He was doing things which were atypical. Eating off other people's plates – tidying, tidying, tidying.”
Soon after, Don Dalziel was diagnosed at the Rural and Remote Memory Clinic in Saskatoon. He had a rare form of dementia called frontotemporal (or frontal temporal), which strikes people much earlier than Alzheimer's and affects the portion of the brain that controls executive functioning, like reasoning, judgment and speech.
The diagnosis effectively handed Donna a delayed death sentence for her husband. She was devastated. She knew no one else in Prince Albert, Saskatchewan, where they live, in the same position.
“I have never been so low in my life. I didn't know who to turn to,” says Donna, who quit her job as a teacher to care for Don. “My doctor didn't even know what it (frontotemporal dementia) was.”
But thanks to a support group that the clinic helped to establish, Donna Dalziel is now connected to 9 other people across Saskatchewan whose spouses have been diagnosed with frontotemporal dementia or other atypical forms of dementia.
Unlike the cancer or Alzheimer's support groups that exist in many communities across Canada, urban and rural, Donna's group meets virtually – via Saskatchewan's telehealth network. Once a month, Donna drives 10 minutes to the local hospital. Once there, she sits in a conference room and talks over a microphone to a video camera while watching a television screen in front of her. All of the other group members are visible on the screen, and they can see and hear each other in real time. Together, the group helps each other through the rollercoaster that is daily life as a caregiver to the stranger who used to be their spouse.
“For the first nine months, I never stopped crying at these sessions,” says Donna. “Every time I opened my mouth, I'd start crying again. But I felt safe doing that, because everybody else understood. I gathered strength from them; they taught me how to deal with it.”
Neuropsychologists Dr. Megan O'Connell and Dr. Margaret Crossley lead and co-ordinate the group, suggesting resources and ways to help the members, who live all across the province, ranging from Swift Current to Prince Albert.
The support group, which is a direct offshoot from CIHR-supported research at the Rural and Remote Memory Clinic, has been a lifeline for Donna Dalziel.
“My family has been really supportive, but nobody understands it,” she says of living and caring for her husband. “Until you live it, you don't get it.”
Ernie Morgan, whose 45-year-old wife Karen was also diagnosed with frontal temporal dementia, struggles with sadness, frustration, anger and loneliness as he watches his partner slip away from him.
“For the most part, I have had to suck it up and deal with this on my own,” Ernie Morgan told a recent CIHR-supported summit held by the Knowledge Network in Rural and Remote Dementia Care at the University of Saskatchewan. “The telehealth program offered by the Memory Clinic is all that I have.”
The support group has been invaluable, because he is able to ask questions of his fellow caregivers, who understand and accept his concerns without question, he says.
“My only wish is that this program was available to more people.”