How is dementia diagnosed? It’s such a simple question. But it has such a complicated answer.
You would think that with the world facing one of the largest medical epidemics of our lifetime, there would be a simpler, easier way to explain how this disease gets diagnosed. But it’s actually quite complicated. That’s probably why so many Careblazers have been asking me about it.
So let me walk you through the steps the way they usually go.
How Is Dementia Diagnosed, Step by Step
Step 1: The Primary Care Provider Rules Out Other Causes
Typically, the primary care provider is the first point of contact. Once concerns have been raised, the primary care provider is probably going to:
- Order some lab tests, to rule out things like vitamin deficiencies
- Ask about depression and mood
- Make sure there’s no underlying infection happening
- Take a look at the medications, to make sure nothing could be making the symptoms worse
That medication check matters. There are a lot of medications that are pretty dangerous for older adults and can cause fuzzy thinking or impaired memory.
Step 2: A Brief Cognitive Screening Test
After the primary care provider looks at all that, they may do a brief cognitive screening. This is a simple 30-question test they can do right there in the appointment.
It’s a really quick and dirty look at how your loved one’s brain is functioning. How’s their memory? Their attention? Their concentration?
What happens next depends on how they do:
- If the test seems okay, your loved one’s doctor might just keep a close eye on them without being too concerned.
- If the score is questionable, the primary care provider will likely refer to a specialist: a neuropsychologist, a geropsychologist or a neurologist.
- If your loved one performed really poorly, the primary care provider may skip that referral altogether and give the diagnosis of dementia themselves.
That last one isn’t ideal. Those screening tests weren’t designed to give the diagnosis. They were designed to give some information, and then you need more testing. But in practice, things aren’t always by the book.
Step 3: Comprehensive Testing With a Specialist
When the primary care provider suspects dementia, the most common referral is to a neuropsychologist or a geropsychologist. Your loved one then goes through a series of more comprehensive tests than that 30-question screening.
This testing session can last anywhere from an hour up to five hours. It involves paper and pencil tests and listening tests, and your loved one might even be asked to draw some items.
Then the specialist scores how your loved one did and compares those scores to other people of a similar age and similar education.
A lot of times family members have told me, “But he’s 86. Everybody does this poorly.”
And I have to say, we’re comparing your loved one to other people who are similar to your loved one. We’re not comparing him to a 21-year-old in college. There’s a general expectation for how someone’s brain should be working at that age and at that education level.
If your loved one starts to show up below the cutoffs in several different areas, that’s how we start to come to a true diagnosis of dementia.
Step 4: Brain Scans, in Some Cases
Depending on the type of dementia, that testing can pick some types up really well, especially Alzheimer’s disease.
In other cases, your loved one might be referred for brain scans, basically to rule out any type of vascular disease or vascular dementia.
Who Diagnoses Dementia?
It’s kind of confusing, isn’t it? So I’m not surprised so many of you have this question.
Not only is the process a little confusing, but the diagnosis can come from different providers. It could come from the primary care provider, the neuropsychologist or the neurologist.
And not everybody who gets a diagnosis of dementia has to have a brain scan. Not everybody has to see a neurologist. The process is different for everybody.
I go further into what makes this process so hard on families in what caregivers wish they knew about the dementia diagnosis process.
The 3 Things Every Doctor Needs Before Diagnosing Dementia
The process is different for everybody, but there are three main things every doctor is looking for, no matter what type of doctor they are.
1. A Clinical Interview
They need to ask what’s been going on in your loved one’s life and how they’re functioning.
2. A Look at Activities of Daily Living
These are things like getting dressed, eating, managing finances, driving, talking on the phone and cooking. They’re a big focus for dementia, because there has to be some sort of decline in those areas to actually get the diagnosis.
3. Some Type of Memory Testing
Some type of paper and pencil memory test should be happening before anyone comes to that diagnosis.
I know it’s a bit of a confusing process. I hope this helps clear it up a little.
Getting through all of these appointments and referrals usually comes with a lot of questions along the way. Inside the Care Collective, you can bring those questions to our weekly support rooms and expert Q&As, and talk them through with caregivers who have been through the same process. You can learn more here.
