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 two of an eight part series.
What’s involved in getting a diagnosis of AD or dementia?
You may be worrying that some forgetful moments are leading to disease rather than aging. Don’t hide your head in the sand.
The earlier you go for a doctor’s checkup, where it can be ruled out (maybe your forgetfulness was Vitamin B deficiency or some other underlying condition), or confirmed, you can begin to work with your doctor to develop strategies for managing it, and plan for the future.
A Personal Story
Catherine Logan was worried about her mom Patricia. “She’d always had numerous friends and lots on the go,” Logan says. “She went swimming two or three times a week for exercise and she was always involved with the church.” Lately, however, Patricia – who lives in Coquitlam, B.C. – showed little enthusiasm for her usual activities.
“I saw a loss of interest in things she had once enjoyed,” says Logan. “And she seemed to be more negative and sad. I thought she might be depressed.”
After consulting the family doctor, Logan and her brother (one of four siblings) teamed up and broached their concerns. To their amazement, the “very strong-willed” Patricia thanked them for caring enough to intervene.
“She knew something was not right,” says Logan. “But she hadn’t gone to the doctor about it because she was really scared.”
She hadn’t gone to the doctor about it because she was really scared.
Patricia, then 76, underwent a doctor’s assessment that included questions intended to tease out the presence of depression and anxiety, as well as the 30-question Mini Mental Status Examination (MMSE) to test for cognitive impairment.
What the doctor saw in the MMSE gave her cause for concern.
“Mom scored well in most of the questions,” says Sheryl Persoon, another of Patricia’s daughters. “The part she struggled with was reading three or four words and then trying to remember them later. She couldn’t.”
The doctor referred Patricia to a geriatric specialist. After two hours of testing, the specialist delivered his conclusion. “I believe you are in the early stages of Alzheimer’s disease,” he told her gently.
It was devastating at the time, admits Persoon. But diagnosing Alzheimer’s early has meant that her mother has had time to plan for the future and has had access to drug treatments that aren’t available to people in the later stages.
“We feel very lucky that our doctor was so proactive,” she says.
Why Early Diagnosis is so Important
Getting a diagnosis of Alzheimer’s disease (AD) or another form of dementia is the first step toward getting treatment. And yet, it’s estimated that fewer than 25 percent of cases of Alzheimer’s disease in Canada are diagnosed—even though cognitive impairment and dementia are present in about a fifth of the elderly population, according to the Alzheimer Society of Canada (ASC).
There are a few reasons for this dire situation.
People may not consult their doctors because they’re afraid to acknowledge that dementia is a possibility. “In our national surveys we know that it’s feared only second to cancer,” says Mary Schulz, director of education for the ASC.
Even if they are willing to go for diagnosis, 4.4 million Canadians don’t have a family physician. According to a 2012 Statistics Canada survey, not all of those people want one, but some 800,000 said they didn’t have a place to go for regular medical care.
Sometimes, however, people with dementia and their families simply don’t recognize the signs. It’s not about forgetting where you put your keys, says Schulz. “It’s about memory loss and changes that affect your ability to function day to day. Things like forgetting how to make a meatloaf when you’ve been doing it your whole life.”
In some cases, as she points out, dementia doesn’t show up as a problem with memory at all. “Quite often people will demonstrate changes in behavior or personality,” says Schulz. “They may become much more irritable or more withdrawn and apathetic. These could be the signs of lots of other conditions, but they could also be the signs of early stage dementia which often go unexplored.”
See the Alzheimer Society’s 10 warning signs of dementia.
What to Expect During Assessment
“There’s no blood test for diagnosing dementia,” says Schulz. “It’s really a process of elimination.” Usually, your family doctor (although you may be referred to a geriatrician or other specialist) will start by administering a test, like the MMSE or the Montreal Cognitive Assessment, a test used across Canada that is slightly more effective for picking up mild cognitive impairment.
If there is cause for concern, says Dr. Clarke, the doctor must determine “whether this is neuro-degenerative Alzheimer’s or another form of dementia, or whether something else could be responsible.”
To rule out other causes, your doctor should review your medication history to see if you’ve recently started on a new medication that might cause a reaction or interact with other drugs you’re taking.
There’s no blood test for diagnosing dementia.
- Make a list of medications for the doctor, or simply throw the whole kit and caboodle into a bag and bring it to the doctor’s office with you, suggests Dr. Clarke. “The first three concerns are drugs, drugs and drugs.”
- The doctor will probably ask you about recent illnesses or life events, because medical conditions or life changes can trigger worrisome symptoms. Then he or she should check your blood pressure, temperature and pulse to assess your overall health and order blood and urine tests to make sure there’s no underlying infection.
- Your doctor will send you for a Computerized Tomography Scan, commonly known as a CT Scan, of the head, If there’s no other obvious cause for your symptoms. This is to rule out other conditions such as tumors or strokes that require different treatment.
- By the time this testing process is done, the doctor should have a diagnosis, although if the results are still inconclusive, he or she may refer you to a specialist for additional testing.
- Once you get the diagnosis of AD or dementia you can begin to work with your doctor to develop strategies for managing it, and you can plan for the future.
Many patients are referred to memory clinics to confirm a diagnosis, for ongoing monitoring of symptoms and for assistance accessing local resources. (For more on memory clinics, click here.) While it may seem shattering at first, says Schulz, it’s not the end of the world. “There are all kinds of people living with this disease and doing exciting things and living a happy life.”
How to Talk so the Doctor Will Listen
These days, many doctors are well educated about dementia, says Dr. Barry Clarke of Halifax, N.S., a GP who specializes in geriatrics. But they may not always recognize the signs in the 12 minutes allotted for a routine checkup. You have to make your case.
“Don’t be polite,” advises Dr. Clarke. “If we were in a social place, we would try to cover up when someone forgot something as a social courtesy. This is not that place. It’s time to be very honest and speak up.”
Specific examples help, adds Schulz. Instead of saying: “I’m just not remembering things like I used to,” say: “I’ve begun to forget everyday words – it’s like they’ve simply disappeared from my brain. Or my mom got lost doing errands in her own neighborhood.”
Dr. Sandra Black, a neurologist at Sunnybrook Health Sciences Centre in Toronto, suggests keeping a list or a journal of symptoms, along with the date they occur because somebody will ask you: “‘When did that start?’”
Timing is important, says Dr. Black, because the doctor will have to rule out other treatable causes for the symptoms–sleeping problems, a reaction to a new medication, an infection or depression.
Want help getting info ready for the doc? Print and fill out the form “Preparing for Your Doctor” on the Alzheimer Society’s website.
There’s some controversy over whether drugs used to treat AD actually work. But, like many caregivers, Persoon credits the medication her mother Patricia takes with slowing her symptoms. “She started with Exelon patches, but that didn’t seem to work so well,” says Persoon. “Now she’s on Aricept, and we really do feel it has helped.”
Medications for Alzheimer’s disease work in one of two ways, says Dr. Chambers.
- Drugs like Aricept, Exelon and Razadyne are cholinesterase inhibitors and may have more effect in the mild to moderate stages of AD. Doctors believe they prevent the breakdown of an enzyme that causes the neurotransmitter acetylcholine – a chemical messenger important for alertness, memory and judgment.
- A drug like Ebixa, by contrast, is believed to block the reuptake of another neurotransmitter, glutamate, possibly helping to preserve cognitive function and memory in the moderate to severe stages of the disease.
Doctors sometimes resist prescribing drugs for AD. In fact, according a recent article in the publication Chronic Diseases and Injuries in Canada, only about 50 percent of dementia patients are taking medications for AD.
There could be good reasons for that, points out Dr. Chambers. Most medications are only effective in the early stages of AD, he points out, and even then, they only help about half of the people who take them. They can also have some nasty side effects – especially when combined with other drugs you may be taking – and the effects wear off over time.
“They are not a cure,” says Dr. Chambers. Nonetheless, he says, your doctor should at least be willing to have a conversation about them.