Why is dementia so hard to diagnose?

Uncategorized Sep 20, 2021

Do you know what type of dementia your loved one has?

There are a variety of different types of dementia. Some people have been given the specific type of dementia, some have been given multiple types of dementia, and some may have just been told that they have “dementia” with no other specifics. 


In today’s post, I want to chat about how healthcare professionals determine what type of dementia someone has and some of the challenges that get in the way of getting that diagnosis. 


If you would rather watch a video on this topic, click here.

If you're looking for information on how dementia is diagnosed in the first place, you’ll want to check out THIS video.

If you’re looking for a video on what’s the difference between dementia and alzheimer’s you can check out the very first video I ever did on this channel right here.


Okay, so on to today’s video. How do doctors even determine what type of dementia someone has?


I’m willing to bet you fall in one of 3 groups when it comes to getting a diagnosis: 

Group 1: Someone has already given you a specific diagnosis beyond dementia.

Group 2: Someone has told you your loved one has dementia but they aren’t sure what type.

Group 3: Or, you’re still in the process of trying to get dementia. So far even though you are noticing changes and concerns, your loved one’s providers aren’t yet seeing changes and don’t have concerns. 


So which one are you in right now? Let me know in the comments below. 



Here is why it’s so hard to get a specific diagnosis: 


1) Symptoms in dementia overlap

For example, visual hallucinations are common in Lewy Body dementia, but they can also happen in other types of dementia like Alzheimer’s.  You can’t just rely on one symptom to tell you what type of dementia someone has. 


2) A Diagnosis isn’t made on any single test. 

There isn’t a one and done type test for dementia like there is for other conditions. Diagnosing dementia involves lab tests, mood and cognitive testing, extensive history taking, and maybe even a brain scan. 

When trying to look for a diagnosis, you are looking for certain patterns in cognitive testing. Neuropsychological testing is the best way to do this. There is comprehensive testing that can be done and based on how that person does on all those tests, the neuropsychologist can often tell what type of dementia is more common with that type of performance. 

BUT...many people don’t get neuropsychological testing. Many people just get a brief screening test through the PCP or neurologist that gives you 30 questions. There is no way to determine what type of dementia someone has based only on that brief screening measure. 

Additionally, when someone waits too long to be tested...meaning their thinking has progressed to a moderate or severe impairment level then in those cases, neuropsychological testing can’t even be done and if it is...the person does poorly on most all the measure that there aren’t any specific patterns to see.


The person reporting concerns about the person with dementia is really important in the diagnosis stage. Information about when the problems first started, how quickly the problems seem to be worsening, what specific types of problems there are, any changes in eating habits or social interactions...all those details are important to help get an accurate diagnosis.

This requires that...

        1) a person taking the time to ask those important questions and

        2) another person able to answer those questions.


So if you’re still trying to figure out what type of dementia your loved one has, taking note of things like when the problems started, if they seem to be progressing slowly or quickly, and any changes in behavior are really important things to tell the doctor 


And, to make matters even more complicated, it’s possible to have more than one dementia. 



In the end Careblazer, the diagnosis of a specific type of dementia is an educated guess and often a really good one if your loved one was able to get brain imaging, lab testing, and neuropsychological testing. But it is basically a guess. While there are some genetic tests that can be done, they are quite rare and not used much for clinical reasons...mostly just for research at this point. 


I’m curious...was getting a specific diagnosis a challenge for you and your loved one? Has your loved one received a specific diagnosis? Are you concerned your loved one may have the wrong specific dementia diagnosis? Let me know your experience in the comments below. 


And if this video has you asking all kinds of other questions such as how is it tested, what’s the difference between Alzheimer's and dementia and who can diagnosis dementia, I’ve linked some videos for you below.


I’ll be back next week Careblazer! 


Alzheimer’s Disease vs. Dementia

These 3 doctors diagnose dementia

Who treats dementia symptoms? 

Early onset dementia

Frontotemporal dementia: Signs and Symptoms: 

What’s the difference between mild cognitive impairment and dementia?

Vascular dementia 

What is lewy body dementia?



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