Getting a Diagnosis for Young-Onset Dementia
Young people with dementia often face a longer wait for diagnosis compared to older adults. This delay can prevent them from accessing treatment and support. Here's what you can do to get a quicker diagnosis.
In comparison to older people with dementia, research has proven that it can take 57% longer, and approximately 4.4 years, for individuals with early onset dementia to obtain a diagnosis. A delay in diagnosis lengthens the time for individuals to access treatment and support.
First off, it can be tricky to recognize the signs. Sometimes, the symptoms seem like they're caused by something else, like feeling down, going through menopause, or just being stressed out.
And there are barriers, too. Not everyone has easy access to the right kind of help, especially if they're from different cultures or speak different languages. Research has shown that BIPOC people, Indigenous people, Black people and other people of color are at higher risk of being underdiagnosed compared to white people. Barriers to language and communication, and bias from healthcare providers are a few examples.
Here are 6 steps you can take to ensure you get the right diagnosis.
1. Speak Up for Yourself
Advocate, advocate, advocate. Make sure your doctors know you might have young onset dementia. Sometimes, they need a little reminder that it can happen to younger people, not just seniors. You might even want to see a specialist who knows more about dementia.
“One of my recommendations for folks who suspect this is going on is, be a strong advocate,” says Malcolm Allen, a care partner living in the Niagra region. “If you don’t, you’ll get shoved to the side. 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 of suspicion, then they need to do that.”
Try a different approach if your family doctor is unable to help you
In some circumstances, your doctor will not refer you to a specialist, and if they do, referrals can take several months to process and for you to get an appointment. Fortunately, there are other options.
A family based out of Manitoba decided to pay out of pocket for a complete psychological assessment. Another person in that region was admitted to the hospital as an inpatient and underwent observation for three weeks to obtain a diagnosis.
Going to a naturopath is another option. An individual in Winnipeg felt more comfortable approaching a naturopath with the symptoms they were experiencing. From there, they had the confidence to book an appointment with a nurse practitioner, who was able to refer them for a more specialized dementia assessment.
Lastly, participating in research is another route to getting diagnostic testing and a diagnosis. An individual from Toronto who has a genetic history of frontotemporal dementia signed up for a research study about familiar FTD. Because of this, she was able to go through memory and cognitive testing, PET and CT scans, and genetic testing.
2. Write Down Your Symptoms
Keep track of how you're feeling and any strange things you notice happening to you. This can help your doctors understand what's going on better.
There are many symptoms that correlate with young onset dementia. One of the most common symptoms is memory loss. Oftentimes, doctors want to know when your memory loss started and how often it happens. Other symptoms like vision changes, muscle control and balance concerns aren’t as common but are equally important for you, your family and friends to take note of, write them down or put them in the notes section of your phone for easy reference when you visit the doctor.
Your doctor will likely also want to know how your symptoms impact your day-to-day life — things like your relationships, your ability to perform everyday activities, and even your job. This information will be helpful in receiving a diagnosis and the necessary supports, which makes honesty and transparency vital when going to any appointments.
3. Bring a Friend or Family Member
It's okay to ask someone you trust to come with you to your appointments. They can help you remember things and ask questions you might forget.
4. Learn About Tests
There are different tests doctors can do to figure out if you have dementia. Some are simple, like answering questions or drawing pictures. Others might involve scans or taking samples.
Some of the more basic tests are performed in a medical office and are usually done with pen and paper. These tests include the Mini-Mental Examination (MMSE), the Mini-Cog, and the Montreal Cognitive Assessment (MoCA).
Another type of testing is neuropsychological testing. This includes answering questions, drawing, solving puzzles, and sometimes using a computer.
John McCaffery resides in Calgary and lives with young onset dementia. He explained, “When we were going through the medical system trying to determine the troubles that we were having, neuropsychological testing was really important to us.” Keith Barrett from Ottawa also reported that this kind of testing was helpful and necessary for him, too.
Next is physical testing. Some other medical concerns can mimic the symptoms of dementia. Because of this, a blood sample will likely be taken to look for anemia, diabetes, thyroid imbalances or infections.
CT (computed tomography), PET (positron emission tomography) or MRI (magnetic resonance testing) scans also fall within physical testing. These allow medical professionals to take pictures of your brain and assess for abnormalities. Be sure to let your doctor know if you’ve had previous scans so that they can compare the results.
Lastly, your physician may order a lumbar puncture, especially if you’re under the age of 60. This is a procedure that collects cerebrospinal fluid. It’s then tested for protein biomarkers related to Alzheimer’s disease and other types of dementia.
5. Overcome Cultural Bias with Diverse Testing Options
The Montreal Cognitive Assessment (MoCA) is one of the most popular dementia screening tools in the world. It’s available over the phone or via video call and can be completed in nearly 100 languages. Your healthcare provider can access this tool at mocatest.org/paper
A test that focuses on reducing cultural bias is the Mini-Cog, which can be found at minicog.com. It’s a free test available in Spanish, Portuguese, Chinese, Malay and Arabic.
The Rowland Universal Dementia Assessment Scale (RUDAS) is available on the Dementia Australia website in English, Chinese, and Italian.
Another option is the Canadian Indigenous Cognitive Assessment. You can find it on the website of the Indigenous Cognition and Aging Awareness Research Exchange at i-caare.ca/cica in English and Anishinaabemowin. This website also hosts some factsheets regarding signs and symptoms of dementia from an Indigenous perspective.
6. Find Support
There are organizations out there that can help you through this journey, like the Alzheimer Society of Alberta and Northwest Territories or any Alzheimer society in your region. They can provide information, support groups, and connect you with resources in your area.
Nancy Scott, a professional nurse and informal care partner living in Winnipeg says, “The Alzheimer Society— that is the number one way you will find information and support.” She experienced challenges while seeking diagnostic testing and found help through the society. “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.”
Don't give up if it feels like you're not getting anywhere. Keep asking for help until you get the answers you need.