How to get a diagnosis for young onset dementia
Research shows it can take people with young onset dementia 57% longer to get a diagnosis compared to older people with dementia. Here are some ways to try and get a diagnosis sooner—along with faster access to supports and therapies.
According to the Alzheimer Society of Canada, there are at least 28,000 people in Canada living with young onset dementia.
But the real number is probably even higher.
Why? Because people living with young onset dementia are often misdiagnosed. Doctors can mistake young onset dementia for depression, stress, menopause or other issues.
A Dutch study has shown it can take an average of 4.4 years for younger people to be diagnosed with dementia. This is 57% longer than it takes to diagnose dementia in older people. And it delays access to treatment and support.
Recent research also shows that in high-income countries, Black people, Indigenous people and people of colour are at higher risk of being underdiagnosed for dementia than white people are. Also, BIPOC people are more likely to be diagnosed at a later stage of dementia.
Barriers to diagnosis can include lack of culturally appropriate services, language and communication barriers, and healthcare provider bias, among other factors.
Here are some tips for getting an accurate diagnosis more quickly.
Remind your doctor that younger people can get dementia, and ask them for a referral
Young onset dementia is very real, and it affects people 18 to 64 years of age.
Most GPs are not familiar with all the symptoms. But there are medical doctors who specialize in dementia in most provinces and territories. And they can help your GP out.
Ask your GP, doctor, nurse practitioner or care manager for a referral to dementia-care specialist. These specialists can include:
- memory clinics
- geriatric psychiatrists
- Clinical psychologists
These specialists can run the tests needed to identify different kinds of dementia.
If young onset dementia has been diagnosed in your family, you can also ask for a referral to a genetic counsellor. They can help identify Huntington disease, some kinds of frontotemporal dementia, and some genetic risk factors for young onset Alzheimer’s disease, among others.
Fill out this symptom checklist and share it with your doctor
In 2022, the Alzheimer Society of Canada has created a new checklist highlighting the signs and symptoms of young onset dementia. (It’s based on a checklist that the UK’s Young Dementia Network created and tested in 2021.)
This checklist is important because it covers the full range of symptoms that a person with young onset dementia may experience. Many people—and even doctors—can forget that problems with vision, muscle control and balance can also be related to dementia.
Fill out this checklist with a family member or friend. (They may have noticed some symptoms you haven’t.) Then bring the checklist to your next medical appointment to help start a conversation with your doctor.
Keep a journal or diary of your symptoms, and bring it to medical appointments
Many doctors want to know when your memory issues or thinking problems began, and how often they happen.
They also want examples of how your memory issues or thinking problems—or other symptoms—are having an impact on your day-to-day life. And doctors need you to be specific and honest about your experience, as they can only base their decisions on what you tell them.
Writing your symptoms down in a daily journal or diary can help with this. And as a result, it can help speed up your diagnosis. It can remind doctors of those important facts: when your symptoms began, how they progressed, and how they are impacting your day-to-day life, including your job.
And the journal or diary doesn’t have to be on paper! It can also be in a notes app on your phone, or whatever other tool works for you.
Have a trusted friend or family member attend medical appointments with you
There are three great reasons to have a friend or family member attend medical appointments with you—especially during the time of diagnosis.
First, they might notice symptoms that you don’t. When they tell the doctor what they’ve noticed, that can help the doctor make a more accurate diagnosis.
Second, they can take notes during the appointment. That way, you don’t have to worry about missing anything important and can be present in the moment. Afterwards, those notes can help you keep track of what the doctor said and did.
Third, they can provide emotional support during the stressful process of trying to get a diagnosis.
Get familiar with some of the tests used to diagnose dementia
Getting a diagnosis usually means taking a few different kinds of tests. One is not enough!
Knowing the names of important dementia tests, and some facts about them, can help you discuss options with your doctor.
Neuropsychological testing involves writing or drawing, answering questions, and solving puzzles, sometimes using a computer.
“When we were going through the medical system trying to determine the troubles that we were having, neuropsychological testing was really important to us,” says John McCaffery. John lives with young onset dementia in Calgary. Other people with young onset dementia, like Keith Barrett in Ottawa, have told us this kind of testing was helpful and necessary to them too.
Some thinking and memory tests that health professionals use to screen for dementia include: the Mini-Mental State Examination (MMSE), the Mini-Cog, and the Montreal Cognitive Assessment (or MoCA). These tests are usually done with a pencil and paper in a medical office.
Some of the physical tests used to confirm dementia include a blood sample, a lumbar puncture and (especially for dementia under 60) a CT, PET or MRI scan. (CT means “computerized tomography,” PET means “positron emission tomography” and MRI means “magnetic resonance imaging.” But they are usually referred to by their initials.)
With a blood sample, the doctor is trying to find out if diseases like anemia, diabetes, thyroid problems or infections might be causing you to experience symptoms.
A CT, PET or MRI scan takes a picture of your brain so that doctors can see if there is anything unusual in its structure. If you’ve had these kinds of scans before, tell your doctor so that they can compare your older and newer brain pictures and look for changes.
A lumbar puncture is an optional test that collects cerebrospinal fluid. That fluid is then tested for protein biomarkers related to Alzheimer’s disease and some other kinds of dementia.
Know that dementia tests do come in multiple languages and some culturally appropriate forms
Research shows that one of the barriers Black people, Indigenous people, and people of colour can face in trying to get a diagnosis is a lack of culturally appropriate services.
Many dementia tests also reflect a cultural bias towards white, upper-class, colonial perspectives.
It’s important to know that there are some other options for dementia testing. And that you can advocate for your doctor or healthcare professional to use them.
The Canadian Indigenous Cognitive Assessment is one of these options. It is available for free in English and Anishinaabemowin. You can find it on the website of the Indigenous Cognition and Aging Awareness Research Exchange at i-caare.ca/cica. (That website also has some good factsheets about dementia signs and symptoms from an Indigenous perspective.)
The Rowland Universal Dementia Assessment Scale or RUDAS is another option. It is available in English, Chinese and Italian on the Dementia Australia website.
The Mini-Cog is a short dementia test that tries to reduce cultural bias. It is available for free in Spanish, Portuguese, Chinese, Malay and Arabic at minicog.com.
One of the world’s most popular dementia screening tools, the Montreal Cognitive Assessment or MoCA, is available in nearly 100 languages. It also has versions that can be done over the phone or on a video call. Your doctor or healthcare provider can access these tools at mocatest.org/paper.
If the GP route doesn’t work for you, try a different approach
Even if you do all of the above, some GPs may not refer you to a specialist. Or if they do, it may take several months to actually see the specialist or get tests processed.
Some people in this situation try a different approach.
One BC resident we spoke with who has Lewy body dementia had sleep disturbances as an early symptom. He visited a sleep clinic in a major city, and that was his first big step to getting diagnosed.
A family based in Manitoba paid out of pocket for a complete psychological assessment. Another person with symptoms in that region went under observation as an inpatient in a psychiatric ward over a period of 3 weeks to get a diagnosis.
A person in Winnipeg who was experiencing concerning symptoms decided to first approach the health practitioner they were most comfortable with: a naturopath. After that discussion, they felt more confident approaching a nurse-practitioner, who referred them to more specialized dementia assessment.
Participating in research can also be a route to diagnostic testing. A Toronto resident with early frontotemporal dementia running in her family signed on for a research study about familial FTD. This gave her access to memory testing, cognitive testing, and PET and CT scans, as well as genetic testing.
Advocate, advocate and advocate—then advocate again
Many families we spoke with who are living with young onset dementia told us it was especially important to advocate for a diagnosis.
“One of my recommendations for folks who suspect this is going on is...be a strong advocate,” says Malcolm Allen, a care partner in Niagara region.
Advocating means speaking up and asking for more tests, referrals and information. Even when the doctor doesn’t think it’s needed right away.
“If you don't, you'll get shoved to the side,” says Allen. “Folks need to push hard to get additional testing done. And push to talk to physicians who actually understand dementia. If they have the least bit suspicion, then they need to do that.”
Even people who have worked in the health care system prior to dementia impacting their family can have challenges navigating the diagnostic process.
“The day that it hit me that my husband had aphasia, I started to document, because I’m a nurse,” Nancy Scott, a care partner in Winnipeg, says. “But I had to push my doctor to get a referral to a neurologist. And the first neurologist dismissed us--he hadn’t read my charting, he hadn’t read my documentation. And when I tried for a second one, they declined.”
If you find this process difficult, you are not alone.
Know that the Alzheimer Society is here to support you before, during and after diagnosis
Many families living with young onset dementia have told us that their local Alzheimer Society helped them access diagnostic information sooner.
“The Alzheimer Society—that is the number one way you will find information and support,” says professional nurse and informal care partner Nancy Scott in Winnipeg. After she hit diagnostic roadblocks, the society helped her. “I called the Alzheimer Society of Manitoba and said, who are the top people for dealing with dementia in our area? Then I sent that to my doctor and got a referral to her.”
You can contact the Alzheimer Society for support at any point in your journey, whether before, during or after diagnosis.
Alzheimer Society support groups for young onset dementia offer peer-to-peer resource sharing around diagnostic processes in your region. And Alzheimer Society staff in your area can also help you find clinics that might be helpful.
We are here to link you to what you need. To find programs and support in your area right now, get your local society contacts at alzheimer.ca/find. Or for more info, reach our Information and Referral Line at 1-855-705-4636 or [email protected].
To read more about Young Onset Dementia at your own pace, check out our articles and resources below, or visit alzheimer.ca/youngonset.