Whether you’re new to caregiving or a veteran, there are still things to learn about the Canadian healthcare system. This series of videos from Alz Live provides a roadmap. This is part four of an eight part series.
Memory Clinics are the gateway to dementia-related health care services.
Managing Alzheimer’s disease or other dementias often requires more specialized care than many family doctors offer.
Resource: eCareDiary: manage appointments, track medications and get reminders, organize important documents, coordinate care among family members
Memory clinics were designed to offer health care services from multiple disciplines to those living with dementia. From neurologists and geriatricians to speech therapists and social workers, this team approach to care was first introduced in the 1980s, often at major teaching hospitals.
The main goal of memory clinics is an early diagnosis so that intervention or treatment can also happen early.
Clinic staff conduct cognitive testing, prescribe and monitor medications, but they doesn’t replace a patient’s primary health care provider. Clinics are a supplement to that care, and patients should continue to see their GP even as they access the services of a memory clinic.
The ongoing purpose of the clinic is to facilitate access to other community resources — education, home care, day programs, etc.
There is no cure for Alzheimer’s, but for patients and their caregivers, that service will make living with the disease easier.
What is a Memory Clinic?
According to a 2007 report out of the London School of Economics, Dementia: International Comparisons, “memory clinics of some sort were identified in all the countries studied [12 high-income ones in Europe and North America] although there is no precise definition of what constitutes a memory clinic.”
In Canada, however, memory clinics have some consistency and can be characterized as a team of experts working under one roof to focus on serving the medical needs of those with cognitive impairments.
The team is usually led by a specialist (gerontologist, geriatrician, neurologist, etc.) or GP, along with what are called “interdisciplinary practitioners.”
Those often include nurses, social workers and specialized health care providers, such as occupational therapists. In some clinics, they might also include a speech pathologist, psychologist, pharmacist and others, depending on the particular focus of that clinic and its director.
Besides this specialist-practice model, many memory clinics are hospital-based; both types require a referral from a GP, but a growing number of memory clinics are being offered by GPs themselves, from within their family practices.
Regardless of the location or setup, memory clinics are — for caregiver and patient alike — a gateway to dementia-related resources within the Canadian health care system.
But, usually, those with concerns about their cognition and memory simply report their symptoms to their GP.
Some GPs will order scans and other tests and may make a diagnosis, but because dementia, especially in the early stages, can be tough to confirm, many GPs make referrals to memory clinics for that confirmation.
“When we see a patient, we take a full history of their complaint [memory and cognition] and most of the time I will order an MRI,” says Dr. Carmela Tartaglia, director of The Memory Clinic at the Krembil Neuroscience Centre at the Toronto General Hospital. Brain imaging can show physical factors that explain symptoms — a small or shrunken hippocampus, for example, is often a sign of Alzheimer’s disease.
A diagnosis of dementia can be made within a few visits to a memory clinic, and a patient could then continue being monitored and treated by their GP alone. The patient who stays with the memory clinic, however, will access greater and more specialized services.
Family-Practice-Based Memory Clinics — How They Work
Dr. Linda Lee runs Centre for Family Medicine in Kitchener, Ont., and is developing a model of family-practice-based memory clinic that will allow patients to access the care they need without a referral to a specialist. It’s a model that will not only save the public health system money, but one that will give patients and their families quicker access to what they need. (Read how the memory clinic helped one family here.)
Her clinic structure includes a family doctor who is backed by a specialist, but that specialist doesn’t see patients — they offer advice to the family doctor. Other members of the team (nurses, social workers, pharmacists, etc.) provide services directly to the patient.
“To the best of our knowledge, this model doesn’t exist anywhere else,” says Lee. Even in Europe, which is generally more advanced in dementia care than North America, memory clinics are led by specialists. “This is the first model that allows primary care to build capacity to do more than they could have done before.
“The goal of the clinic is comprehensive care that allows people to live in their own homes independently for as long as possible, to avert hospital visits and maintain the best quality of life for as long as they can. That is our aim,” says Lee. By the end of 2014, she will have trained family doctors in 63 memory clinics across Ontario.
A visit to her clinic, or one run by those she trained, begins with a diagnosis. “We have specially trained 110 family physicians so they will be able to make a diagnosis accurately, given that it’s a very challenging diagnosis to make early on,” says Lee.
Sharon Dillon-Martin is the clinic social worker and often the next step for patients. “We sit down to talk about future planning,” she says. “Where are you going to live, do you have a power of attorney, what community services do you need?” The staff occupational therapist can go do home visits and conduct an abilities assessment, which can be used to secure services through the local CCAC.
Lee’s clinic started in 2006 and her five-day Memory Clinic Training Progam, offered in collaboration with the Ontario College of Family Physicians and operating on a not-for-profit basis, started in 2008. “Dementia has largely been a specialist-managed condition,” says Lee. “With this training, we’ve been able to move much of dementia care into the primary care level in a way that provides greater access.”
The Specialist-Based Memory Clinic Model Has Selling Points, Too
In 1992, neurologist Sharon Cohen was a sole practitioner at a satellite office of the North York Hospital Seniors Health Centre. Today, the Toronto Memory Program is an expansion of that private practice, housed on the top floor of a squat commercial building minutes from the hospital.
That new space is large, but as quiet as a library. One hallway leads to the research area, where clinical-trial participants spend time; another set of locked, glass doors leads to a lab and private area where patients have blood drawn and spinal taps performed (spinal and brain fluid are the same and offer insight into amyloid protein buildup).
Beyond that, you’ll find a lecture hall ringed with enormous north- and east-facing windows, and full of upholstered chairs where caregivers learn about meditation techniques and other coping strategies.
“Everything but the scans [MRI, PET] happens here,” says Cohen. “We’re trying not to send patients all over to different locations.”
Those patients are people with cognitive impairments, including Alzheimer’s. “We see people with very early symptoms to people who are very advanced. It’s a full range,” she says. “We follow them from point of contact till death or institutionalization.”
The on-site services include driving assessments, elder-care mediation and legal advice, speech therapy and psychiatry. Hospital- and family-practice-based memory clinics can make referrals for these services, but don’t generally offer them in-house.
There isn’t one organization, one resource where you can get all these things done.
“It is quite overwhelming for a family to receive a diagnosis [of Alzheimer’s] and be faced with a large number of tasks to be done that are dispersed,” says Cohen. “There isn’t one organization, one resource where you can get all these things done. So part of the role of a good memory clinic is to try and help a person or family navigate the system and be the point of contact.”
Patients need a referral from their GP. The clinic will repeat cognitive testing to determine progress or decline, they’ll talk with the team about the patients’ symptoms and the doctor may prescribe and review medications.
The clinic sends this information to the patient’s primary care provider. Most patients will have appointments at the clinic twice a year, but their caregivers are usually in touch with staff far more frequently than that.
“As the disease changes, or as family coping evolves or breaks down, you need a clinic that will have the capability to case-manage,” says Cohen.
What does the caregiver need to keep their loved one safe, to keep quality of life high and to keep the family functioning well? It’s the clinic’s social workers who help families manage those aspects of the disease.
“We’re often filling out forms, whether it’s for parking permits or drafting letters to say this person’s not capable of managing their finances anymore, or that they need a driving test,” says Michelle Martinez, Manager of Clinical Operations at the Toronto Memory Program. “If a caregiver is overwhelmed, we can call a service directly for them.”
While some clinics focus on severely impaired, fragile elderly patients, others, like Cohen’s, are interested in prevention as well. That interest is why clinical trials are a cornerstone of the Toronto Memory Program.
“We are a big clinical trial centre,” she says, “so if someone has the opportunity and interest to participate in cutting edge research, to try new products that aren’t on the market yet, that’s something that we can make available.”
Hospital-Based Memory Clinics
Hospital-based memory clinics often see advanced and unusual dementia cases (progressive aphasia or frontotemporal lobar degeneration, for example). Patients need a referral, and the wait times can be long (five months for the memory clinic at the Krembil Neuroscience Centre at the Toronto General Hospital). While the family doctor will make the referral, it’s a good idea for caregivers to call clinics as well.
My role is to care for the caregivers.
It’s important to ask if there is a “cancellation list” and to make sure you get your loved one’s name on that. It’s also important not to wait until your situation is dire.
“Unfortunately, people still think these are illnesses of aging. When you’re repeating yourself or calling your children four or five times a day, that’s not aging,” says Tartaglia. “That gets missed for a year or two or three, or even 10 sometimes. So when patients get here, they’re often so advanced, we can hardly do an assessment at all.”
Once that assessment, including cognitive testing and various brain scans, is done, the patient has access to the clinic resources, starting with the staff social worker, “she’s kind of like part of our treatment plan,” says Tartaglia.
Her name is Maria Martinez and she helps patients find treatment outside the clinic, within the larger health care system. “People can’t sit around all day and watch TV—it’s actually really bad for your brain,” says Tartaglia, who prescribes exercise for all her patients. “Older dementia patients need to get into seniors programs,” she says.
Martinez’s job is a dual one: patient advocate with CCAC and other agencies (“sometimes I have to advocate very strongly to get patients the services they need, and other times it’s easy,” she says), and family support. “The caregiver in our clinic is as important as the patient, and my role is to care for the caregivers.”
That is done by arranging PSWs, helping with long-term care choices, and making connections to the local Alzheimer’s Society and other agencies.