TORONTO — Two years ago, Stuart Brandy would be reading a book or trying to get some paperwork done when suddenly he would have no idea what he was doing.
“I would just stop, and have this five- or six-minute time of ‘What the hell is going on?”’ the 70-year-old Torontonian remembers.
Before long, Brandy saw a doctor. Then more doctors. Then a trip to the hospital, and more doctors. He told them about forgetting things, about losing track of what he was doing and about his headaches.
“I could hear them debating. One guy said, ‘You don’t look like that with a headache,”’ he says, adding with a laugh, “That got me wondering about just what I looked like.”
But his looks weren’t the problem. Brandy learned he has Alzheimer’s disease, and the news hit him hard.
“It was quite a shock,” he says now, his sentences suddenly shorter.
So he can appreciate a recent study that found doctors are often reluctant to diagnose dementia, focusing instead on patients’ other medical needs. The Australian study found that only 35 per cent of cases are ever diagnosed.
“We hear a lot of frustration from families about the inability to get a diagnosis,” says Kathy Hickman, education director of the Alzheimer Society of Ontario. “They can see what’s happening, but can’t get the diagnosis.”
Dr. Bill Dalziel, an Ottawa geriatrician, says the situation is probably not as bad in Canada as in Australia, but estimates that only about half of all dementia cases are diagnosed, and that only half of those are sent for treatment.
“That means only about a quarter end up getting treated,” says Dalziel, head of the Ottawa-Carleton Regional Geriatric Assessment Program.
General practitioners are often pressed for time, and making a dementia diagnosis is a long process.
“It takes a fair amount of time to diagnose a person with Alzheimer’s,” he says. “That’s a big barrier.”
Dr. Nerida Paterson, a senior lecturer at the University of Newcastle in Australia and a co-author of the study presented at the International Conference on Alzheimer’s Disease in Vienna recently, interviewed more than 100 family doctors in hopes of finding ways to improve the diagnostic process.
Paterson and her colleagues found there can be a reluctance to diagnose dementia, in part because of a perception that there’s little treatment to offer, which she calls “therapeutic nihilism” surrounding dementia.
“Many doctors in our study believe that there is little advantage in diagnosing dementia early in the course of the illness, as nothing can be done to alter the course of the illness,” Paterson wrote in an email.
“They perceive the new anti-dementia drugs as having only a limited and transient benefit at best.”
Dalziel has seen that in Canada.
“The GPs feel the drugs aren’t curative,” he says, adding that more effective drugs are now in the works, a development he expects will encourage more doctors to diagnose dementia.
While other studies have found that physicians also worry about damaging the doctor-patient relationship, fearing a dementia diagnosis will push away the patient and leave other health concerns untreated, Paterson says the doctors she surveyed simply saw dementia as a low priority. “The patient’s other medical needs took priority over diagnosing and managing the dementia,” Paterson says. “Patients frequently have multi-system disease and these diseases have a bigger impact on their lives than mild cognitive impairment.”
Such concerns often lead to a delayed diagnosis, she says.
It can be particularly tough to diagnose patients who are themselves caring for someone else, the study found, since caregivers will often downplay their own symptoms out of fear they cannot afford to become ill and give up their caregiving role. The good news, the study found, is that the more doctors are made aware of the treatments available for Alzheimer’s disease and other forms of dementia, the more likely they are to diagnose a problem and speak frankly with their patients about it.
Doctors who had a good working relationship with local Alzheimer’s organizations and those providing support services for patients and caregivers were most likely to have a positive attitude toward diagnosing dementia.
Hickman says the Alzheimer Society of Ontario has started a program called First Link, in which family doctors are connected with their local Alzheimer’s society, where they can be made aware of the counselling and therapeutic services available to their patients.
Dalziel, who works with a First Link team in Ottawa, says such programs are making a difference.
“I am certainly seeing people earlier now than I did five years ago,” says Dalziel. He is part of a project to use other medical professionals, such as nurse practitioners, to help make dementia diagnoses.
Hickman encourages early diagnosis, saying medications and other treatments have been shown to be much more effective the sooner they are begun.
Brandy says he’s used the time since his diagnosis to have talks with family members, finally saying the things he’s put off for too long and letting them know his wishes.
The key, he says, was getting over the stigma himself, and facing the disease like any other ailment.
“I say to people, ‘If you broke your ankle, you’d get it treated,”’ he says. “Well, let’s just say I fell and broke my head.”