Early onset Alzheimer’s - what is this strange version of dementia

Many of the resources available aren’t geared toward younger people with Alzheimer’s

The more I’ve learned about Alzheimer’s, the more I’ve realized that the Alzheimer’s that starts when you’re older seems to be fairly different from the one that starts when you are younger.

The naming convention is a little bit odd and even the way they defined it is strange as well. There is early stage Alzheimer’s, and there is early onset. You would think these are the same thing, but I guess they are not.

Because Dave’s dementia was diagnosed before he was 65, his version of Alzheimer’s is called early onset. Often when I’m describing this to other people, I call it young onset because people get confused otherwise.

Our struggles getting a diagnosis basically meant that it was not until Dave had achieved mid-stage dementia that his condition was identified. From what I’ve learned this is not uncommon for young onset.

Very few doctors want to tell someone in their early or mid 50s that they have Alzheimer’s. And that’s because they don’t have anything to cure it! Current medications, even the ones that are being proclaimed as huge progress, can at best only hope to slow down the disease.

Well meaning friends have frequently sent us articles about Leqembi, but he’s not qualified for that since you can only have an early stage of dementia to quality. Sadly, you cannot actually say that Dave is in an early stage of Alzheimer’s - he is too far progressed.

Also, if you can even afford Lequembi ($26,500 per year, not including the PET scan to qualify for the treatment and ongoing MRI scans to check for side effects) and tolerate the possible side effects (brain bleeds), early results indicated this treatment results in a possible 27% slowing of the disease (not reversal).

We are in a support group in our area, and I know one caregiver whose loved one started getting the Leqembi injections earlier this year (they were fortunate to qualify for and have coverage to help afford it). It helped for a couple of months but during our last call, the caregiver mentioned his discouragement over a big dip of functionality with his loved one.

Even so-called miracle drugs cannot do much for this disease.

What else is different?

Beyond slow diagnosis for early onset, I’ve also seen that progression of Alzheimer’s seems to be faster than I’ve seen with older onset folks. I’m grateful for the support groups we have been attending but it also breaks my heart to see my husband dealing with same issues faced by 80+ year olds who have had Alzheimer’s for 10-15 years.

A lot of the dementia programs and services offered by the Alzheimer’s Association and the state Department of Aging are geared toward retirees who have the ability to go to day programs or who are covered by Medicare.

I get it - most people who have Alzheimer’s are older. I just wish there were more younger-patient friendly programs. When you are not yet retirement age and when you aren’t independently wealthy enough not to work, taking time off to attend a day program or drive your loved one to an adult day care (to hang out with people 20+years older than you) is not very do-able.

I’ve had friends ask me about Dave’s disease, and here is a video that covers a lot of the things I’ve learned through this journey. If you have time to watch it, this will provide a nice primer on early-onset Alzheimer’s.

Early-Onset Alzheimer's video: