Early Onset Dementia

Hello Careblazer,

Today I’m going to talk about signs and symptoms of early onset dementia and how it differs from dementia that occurs later in life. When people think about Alzheimer’s disease or other types of dementia, they typically think of something that impacts older people. But did you know it’s possible for younger people to get dementia as well? I’ve had a lot of requests to talk about this topic so I hope it helps. 

Remember, if you have a topic or question you want me to answer, leave it below and I’ll do my best to do a future video on your question. 

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

Before we get started I want to remind any new viewers that I have free Careblazer Survival Guide with tips and information to help you get through the dementia careblazer journey. 

Alright, now let’s talk about early onset dementia, also sometimes referred to as younger age dementia or working age dementia. 

What exactly is early onset dementia? 

Early onset dementia, is any dementia that occurs in someone under the age of 65 years old. Typically, it sets in in the 40’s and 50’s but it can present as early as the 30’s.

As you know from watching my very first Careblazer video ever, there are many different types of dementia:

 Alzheiemer’s disease

Lewy Body dementia

Frontotemporal dementia

Dementia due to head injury

and so on... 

Early onset dementia can occur with any of those types of dementia. So a diagnosis of Alzheimer’s disease in someone under 65, would be Alzheimer’s disease, early onset. 

Also, if you remember from the video I did on the different stages of dementia video, there are 3 general stages of dementia (Early, middle, and severe). Someone with early onset dementia can be at any stage of dementia- early, middle, or severe. So using the example of the person with Alzheimer’s disease, you can have someone with Alzheimer’s disease, early onset, moderate stage. 

Both of those videos are linked at the bottom here if you want to check them out later. 

About 5% of the people who have dementia, have early onset dementia and about 1% of those people actually get the disease from having a parent or grandparent with early onset dementia. There are 3 types of genes associated with early onset dementia: 

The APP, the PSEN 1 and the PSEN 2.

These 3 genes are different that the APOE gene that most people hear about that places you at greater risk of Alzheimer’s disease in general. 

According to the Mayo Clinic, these three genes account for less than 1 percent of all Alzheimer's disease cases but account for about 60 to 70 percent of early-onset Alzheimer's cases. 

Because this type of dementia is not as common and because most healthcare professionals aren’t thinking of dementia as a possibility in someone whose under 65 years old, this is a diagnosis that is often missed and takes a while to officially diagnosis.  

Also, because this develops at a young age, it’s more likely that the person with early onset dementia is still working. That’s why sometimes early onset dementia is referred to as “working-age dementia.” They will begin to show problems at work, have difficulty completing tasks and the person with dementia, co-workers, and supervisors may not understand what the issues are coming from. Often this can lead to low self-esteem, challenges at work, and in some cases some serious errors. This type of dementia also makes it more likely that the person is still driving, managing finances, and doing other things that have some serious negative outcomes if the disease isn’t recognized earlier. 

Because the person tends to be younger and dementia isn’t exactly the first thing to pop into people’s minds, family members, colleagues and friends may struggle to understand what’s going on with the person. They may think they are going through a hard time, having mood issues, or going through some type of crisis. They typically don’t view the strange behaviors and memory issues as a medical condition requiring help. As a result, family members may not even think to get that memory is an issue and not even think to bring this up to a medical provider. 

I actually read a book about a former doctor who had early onset dementia and the impact his disease had on his work was heartbreaking. He went from being a valued physician, providing lectures and mentoring students to not making sense in lectures, forgetting big details, and giving out wrong information. The book was called Dancing with a Stranger and it’s from the account of his wife. To check the book out yourself, click here.

This type of dementia also tends to progress more quickly than dementia developed later in life. 

A unique challenge is that many times the person with early onset dementia doesn’t qualify for some of the programs designed to help people with dementia because of the young age. For example, many adult day health care centers, social support services, memory care facilities are designed to accept people 65 or older. 

For the facilities that do accept younger aged individuals, the person with dementia often feels uncomfortable or like they don't belong because much of the activities are geared for people who are much older and there aren’t likely to be others who are similar in age. 

Now, many caregivers tell me they are concerned they are getting dementia. You may notice that you are forgetting things more often, missing payments, forgetting appointments, and so on. Because I’m guessing some of you reading this are in that same boat, I want to remind you that there are MANY different conditions that can look like dementia. Early onset dementia is pretty rare. You may want to check out my video on dementia look-alikes if you are feeling concerned that you have dementia and be sure to talk to your healthcare provider about your concerns. And if you want to reduce your risk of getting dementia, be sure to watch last week’s video on reducing your dementia risk and improving your thinking. Again, those videos are linked below.

I hope this video has been helpful for you, Careblazer. If you want to learn more about how dementia is diagnosed, you can check out the link below. 

I’ve also included a link to get alerted about my upcoming free live Care Class where you’ll have the opportunity to ask me any of your questions. I hope to see many of you there. 

I’ll be back next week. Until then, keep up the great work.

Stages of dementia: https://youtu.be/sGjuX8WHJLk

Frontotemporal dementia: https://youtu.be/oKurhSgchww

Vascular dementia: https://youtu.be/ODmAfLv2W5Q

Dementia look alikes: https://youtu.be/fvbwAhAJCoQ

How to reduce dementia risk: https://youtu.be/EdDNm_3oJOU