Show me the Evidence

Fall 2012
Volume 1, Issue 3

[ Table of Contents ]

Rural Relief: A New Delivery Model for the Diagnosis and Treatment of Dementia

Diagnosis and treatment plan in a day, not a year

At a Glance

Who: Dr. Debra Morgan, University of Saskatchewan

Issue: Rural Canadians and their families face a heavy burden in coping with dementia. The current model requires travel to cities – often several times over months or years – to see specialists, get a diagnosis and arrange and receive care.

Project: Dr. Morgan led a CIHR-supported project that assessed the needs of dementia patients and their families and caregivers living in rural Saskatchewan. Based on their findings, they designed the rural and remote memory clinic in Saskatoon, a one-stop facility where patients go through a series of tests and see dementia experts all in one day, then get their diagnosis and treatment plan before returning home. The research team has continued to collect and analyze data to improve treatment options.

Research Evidence: Dr. Morgan and colleagues have published several papers demonstrating how the one-stop approach, combined with follow-up treatments that make use of Saskatchewan's 179 telehealth centres, has transformed the diagnosis and care of rural dementia patients.

Evidence in Action: Using the new model, the team has drastically decreased the time required to provide diagnosis and treatment, doing in a single day what could ordinarily take more than a year. The clinic has offered support services for almost 1,000 family members and treated almost 400 patients. A telehealth-based support group for spouses and caregivers of patients with frontotemporal dementia (FTD) was initiated in 2009 and is currently being rolled out as a support program by the Alzheimer Society of Saskatchewan.

Sources: Morgan et al. Improving access to dementia care: development and evaluation of a rural and remote memory clinic, aging & mental health, Aging & Mental Health 13, 1 (January 2009): 17–30.

Often, the first sign is simply forgetfulness. Not remembering where the car is parked. Blanking on yesterday's conversations. Is it dementia in its early stages or just garden-variety absent-mindedness brought about by getting older? Early diagnosis of Alzheimer's disease and related dementias is crucial to getting timely treatments that can minimize symptoms and accessing interventions that offer families much-needed support.

Video with Rural and Remote Memory Clinic Team

Unfortunately, no simple test exists for dementia. Arriving at a diagnosis often requires tricky navigation through the health care system: seeing the family doctor, following up on referrals to specialists and going for – and awaiting the results from – a battery of tests. The process places extra demands on people in rural or remote communities who must travel many miles, many times, to town.

"People were spending more than a year waiting for appointments and going back and forth," says CIHR-funded researcher Dr. Debra Morgan of the University of Saskatchewan. "That's definitely not ideal for families struggling with dementia symptoms."

With Canada facing a "dementia epidemic" that will see the number of patients more than double from the current 500,000 within a generation, finding better ways to diagnose and care for people is an urgent challenge.

Dr. Morgan and colleagues responded to that challenge through the creation of the Rural and Remote Memory Clinic at the Royal University Hospital in Saskatoon, an interprofessional team comprising a neurologist, neuropsychologists, physiotherapists and a nurse coordinator. "Patients get all their investigations done and they get their CT scan," says Dr. Morgan "Our goal is to have a diagnosis for them and a plan for treatment and management of their problem by the end of the day."

Evidence in Action: Diagnosis and treatment plan in a day, not a year

The Memory Clinic stands as a model for the one-stop approach to diagnosing dementia, and demonstrates how to make optimal use of telehealth to provide care and support for patients and families who live far from cities. So far, in Saskatchewan, it has helped almost 400 people and almost 1,000 family members and caregivers.

Videoconferencing helps. "Before the patient and their family members come to Saskatoon, they go to their local hospital or health centre, wherever the telehealth facility is located, and our neuropsychologist and nurse spend a half hour with them gathering information about their history and the problems they've been experiencing," says Dr. Morgan. "That way, we're prepared to give a tailored assessment when they come. It also makes the patient more comfortable – when they arrive they'll say, 'I saw you on TV!' We establish a relationship with them."

Research played an important role in determining how the Memory Clinic uses telehealth as part of its treatment model. "Because of CIHR funding, before we implemented the clinic we were able to travel over 7,000 kilometres as a team to meet with health care providers in all the communities that, at that time, had telehealth," says Dr. Morgan, who holds an Applied Chair in Health Services and Policy Research. "We talked to doctors and nurses and home care workers and other health professionals to gather their insights."

Based on that information, the team modified both the format of the clinic and the design of the research, says Dr. Morgan. "For example, we learned from remote northern communities that requiring people to alternate between telehealth and in-person appointments was a real barrier to buy-in. Some patients would have to drive more than 400 kilometres for the face-to-face follow-ups. So, we modified our research design and treated the remote northern communities as a separate study, offering telehealth for all their follow-up appointments."

After collecting data from patients and their family members throughout the first four years of operation, the Memory Clinic team established videoconferencing as such a strong strategy that they now offer telehealth for all follow-up appointments.

For Heather Dyck, a homemaker who lives in Birch Hills, a two-hour drive northeast of Saskatoon, the Memory Clinic "gave us our dad back."

Several years ago, her father Fred, then in his early 70s with a history of heart disease, small strokes and epilepsy, began losing mental capacity, the ability to walk and bladder control. "Our family doctor just sort of said that with all those things going on, it's just more strokes or whatever. I wasn't satisfied and asked if we could be referred elsewhere."

The experts at the Memory Clinic diagnosed her father with normal pressure hydrocephalus, a rare condition in which a build-up of fluid in the brain can lead to symptoms of dementia, difficulty in walking and incontinence.

"The surgery was done and a shunt was implanted," says Mrs. Dyck. "So instead of life in a wheelchair, limited ability to even talk and no bladder control, Dad went back to driving a car and being fully functional for a number of years. He passed away last December, but he had several years of good quality life that he would not have had without the Memory Clinic. It would not have been caught anywhere else."

While helping families like Mrs. Dyck's is the Memory Clinic's main purpose, it is as much a research lab as it is a clinic. "Right from the beginning, we have been evaluating everything and developing ongoing research," says Dr. Morgan. "All of our team members are co-investigators of related spinoff projects."

Roger Carriere, Executive Director of the Community Care Branch of Saskatchewan's Ministry of Health, views the Memory Clinic as a model for increasing the availability and accessibility of dementia care for those outside of urban centres.

"We're very pleased with the service," says Mr. Carriere. "In particular, the clinic operates under a family-centred model of care, involving the patient's family and caregivers at all points. It could serve as a model for other provinces who are attempting to provide care in rural and remote areas."

Support for spouses of FTD patients

Frontotemporal dementia (FTD) usually takes hold at a younger age than Alzheimer's disease and arrives with a different set of symptoms – behavioural rather than memory related. "Families of these FTD patients really struggle. There are no resources tailored to them," says Dr. Morgan. Drs. Megan O'Connell and Margaret Crossley, Rural and Remote Memory Clinic neuropsychologists, worked with spouses of FTD patients to develop and evaluate a telehealth-based support group. In operation since January 2009, the spouses meet every month via videoconferencing to share their experiences and offer each other support. The program has been so successful that the Alzheimer Society of Saskatchewan has adopted the model and is now operating a similar telehealth-delivered support group for FTD caregivers.

From getting support to giving support

The support group that researchers Drs. Margaret Crossley and Megan O'Connell organized and evaluated for spousal caregivers of patients with FTD led to the production of videos featuring three of the spouses sharing their experiences. As well, Donna Dalziel, one of the caregivers, has gone on to develop a program of engagement activities for people with FTD. The video is available at the University of Saskatchewan Rural Dementia Care website.

"Dealing with dementia is isolating enough. Often FTD caregivers are still working. They may still be caring for children and caring for aging parents at the same time. For us, it's invaluable to have a model for an FTD support group that has been developed through a research project and is evidence-based and credible. It's a win-win situation."
– Joanne Bracken, Executive Director of the Alzheimer Society of Saskatchewan

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