Aiding rural dementia patients

Rural and Remote Memory Clinic | Fewer medical visits needed to get diagnosis, care

A unique clinic in Saskatoon is helping rural residents avoid multiple trips to specialists and the potential yearlong wait for a dementia diagnosis.

The Rural and Remote Memory Clinic housed at the Canadian Centre for Health and Safety in Agriculture at the University of Saskatchewan can provide a diagnosis in a single day.

Family physicians refer patients who are displaying dementia symptoms. They then spend a day at the clinic to be assessed by a team that includes a neurologist, neuropsychologist, geriatrician and physical therapist.

At the end of the day, the patient and family meet with the specialists to discuss the diagnosis and a plan for care.

Debra Morgan, chair of rural health delivery at the CCHSA, said the innovative facility then takes it one step further.

They follow up by telehealth, or two-way videoconferencing usually from the local hospital or medical office, which eliminates the costly and lengthy trips back to the city.

“On average, we’ve been monitoring this in our clinic, we’re saving patients and their families over 400 kilometres per round trip by going to their telehealth in their home community versus coming all the way to Saskatoon for a followup appointment,” said Morgan.

She said the specialists like to monitor those patients who have started taking anti-dementia medication to ensure the dose is correct.

The family physician can also participate to ensure the care plan is followed.

The only problem is the clinic is open just one day per week and has accumulated a long waiting list.

Morgan said the team can devote only one day to diagnosis with its current resources.

The clinic was launched in 2004 as a demonstration project under a five-year research grant. When funding ran out in 2009, the provincial health ministry agreed to step in and keep it going.

More than 300 people have already gone through the clinic.

Morgan said they are trying to shorten the wait list by modifying procedures. Some patients, for example, may see the neurologist and subsequently not need to see other specialists.

“We are finding that some patients are already fairly advanced and there’s not as much potential for intervention because we’re more focused on the early stage,” Morgan said.

Confirming the type of dementia a patient has is critical.

Certain medications and treatments can be prescribed if the diagnosis comes early enough.

“In our clinic, we don’t see so many patients with Alzheimer’s disease because it is the most common type and family physicians tend to be more comfortable diagnosing that because they see it more often,” Morgan said.

They see less common vascular, frontotemporal and Lewy body dementias.

“People are really wanting to know what’s going on,” Morgan said. “They can tell that something’s not right, but until they get a diagnosis, it’s very hard to move forward both emotionally and figuring out what to do on a more practical level.”

A diagnosis makes it possible to access home care and other support.

For example, the clinic is part of the Alzheimer Society of Saskatchewan’s First Link program. With the patient’s permission, the clinic refers the patient to the society, which then follows up with information.

Chief executive officer Joanne Bracken said the society has a network of support groups across the province, including the one it is operating by telehealth in partnership with the rural and remote memory clinic.

“It’s specifically for those caring for someone with frontotemporal dementia,” Bracken said. “Their needs are very different and unique from people who traditionally attend our support groups.”

This is because frontotemporal dementia is typically diagnosed in younger people — in their 40s and 50s. These people may still be working or have been let go from their jobs because of the undiagnosed dementia and have no access to disability programs.

There could be young children at home, and there is pressure on a spouse to make up for lost income.

Bracken said these people are often misdiagnosed with mental illness, but don’t respond to that treatment.

“If it’s hard to get a diagnosis for Alzheimer’s, it’s extremely difficult to get one for frontotemporal dementia,” she said.

“Frontotemporal dementia affects reasoning and judgment and so people get very fixated on certain things — sweets, repetitive motions,” Bracken said. “Lots of times, there’s a real loss of sexual inhibitions. Sometime people find that difficult to talk about in a group where there’s a lot of elderly caregivers.”

Because this type of dementia is less common, the caregivers are more spread out and telehealth allows them to connect with others in similar situations.

Morgan said there is still a lack of awareness about symptoms, particularly for the more complex dementias, and people aren’t getting a diagnosis early enough.

She said health-care providers have to be ready for the rising tide of new patients.

“One clinic is not going to be able to cope.”

Types of dementia

There are many types of dementia, but broadly speaking, symptoms typically include loss of short- and long-term memory, judgment and reasoning, changes in mood and behaviour and changes in the ability to communicate.

Alzheimer’s disease is the most common form of dementia at approximately 63 percent. It is a progressive, degenerative and fatal brain disease in which cell-to-cell connections in the brain are lost. It is not a normal part of aging. Symptoms of Alzheimer’s include:

* memory loss that affects day-to-day functioning

* difficulty performing familiar tasks

* problems with language

* disorientation of time and place, poor or decreased judgment

* problems with abstract thinking,  misplacing things (often in inappropriate places)

* changes in mood and behaviour,

* changes in personality and loss of initiative

Vascular dementia is the second most common form of dementia at an estimated 20 percent of all cases. Many people with Alzheimer’s disease also have this dementia, which is caused by problems in the blood supply to the brain. Stroke is a common cause so this dementia may come on suddenly. Risk factors include being older than 65, high blood pressure, heart disease and diabetes.

Frontotemporal dementia tends to occur in younger people and primarily affects the areas of the brain associated with personality and behaviour. Between two and five percent of dementia cases are this type.

Lewy body dementia occurs because of abnormal deposits of a protein inside the brain’s nerve cells. Why or how this happens is unknown.

Creutzfeldt-Jakob disease is a rare dementia that comes on fast, affecting about 35 Canadians each year.

There are also dementias associated with neurodegenerative conditions such as Parkinson’s disease and Huntingdon’s disease.

Some reversible dementias include those secondary to a primary illness such as thyroid disease or kidney disease.

Source: Alzheimer Society of Canada

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