Whenever someone finds out that Harvey had Alzheimer’s disease, invariably, the response is, “But he’s so young!” Yes, I know.
So I thought I’d share a little of the challenges that are specific to a patient diagnosed with this disease at a young age.
But first, some terminology and numbers. Joy!
Younger onset Alzheimer’s disease is defined as Alzheimer’s disease that is diagnosed before the age of 65. It can be seen in people in their 30’s or 40’s. You may have also heard the term “early onset Alzheimer’s disease,” but because that nomenclature causes confusion with the term “early stage Alzheimer’s disease,” the medical community is now using “younger onset.”
Alzheimer’s disease currently affects about 5.8 million Americans. Younger onset Alzheimer’s disease accounts for about 5% of all cases; that’s about 290,000 Americans currently living with this form of the disease.
A question I am frequently asked is, “Did anyone in his family have it?” By that, I think they mean, “Is there a family history of younger onset Alzheimer’s disease?”
There are 3 known genes that cause genetic, or familial, Alzheimer’s disease, resulting in younger onset disease, but they are actually very rare. Popular books and movies like Still Alice give the false impression that younger onset Alzheimer’s disease is purely genetic. I actually had Harvey tested for these 3 genes, for our daughters’ sake, and he was negative for all of them.
Most younger onset Alzheimer’s disease patients have the common, garden variety form of the disease. And through testing done for a drug study, we know that Harvey did indeed carry at least one gene known to play a role in the older onset form.
And while the disease manifests itself like the more common form seen in older aged patients, it can be relatively more aggressive in a younger population. If someone has Alzheimer’s disease at such a young age, it stands to reason that the progression might be more robust. But because younger patients tend to be healthier is other respects, life expectancy is still 8-12 years after a diagnosis.
There are some distinct differences that someone in this age group has to confront though.
The most obvious difference is that a patient with the younger onset form is much more likely to be in the prime of his or her career when the disease makes its appearance. This can have a catastrophic effect on the family’s finances, especially if it affects the primary bread winner. If the other spouse must suspend working in order to care for the ailing spouse, then two incomes are lost. (Fortunately, Social Security has now added younger onset Alzheimer’s disease to the list of conditions under its Compassionate Allowances Initiative, giving expedited access to Social Security Disability Insurance.)
I realize that our situation highlights our relative privilege. We were both physicians, earning a high income and able to afford excellent disability insurance coverage. I could afford to pay for outside caregiving and continue working. My heart aches knowing there are families dealing with this disease with much fewer resources.
Next week, I’ll highlight a few other aspects that are unique to a family dealing with younger onset Alzheimer’s disease.
6 Responses
Thank you for sharing this!
My husband also has Younger Onset Alzheimers Disease and there is not a lot out there online.
He was officially diagnosed while in a clinical trial about 3.5 years ago.
We are now both retired. He is 59 and I am 55.
He retired almost 3 years ago and 1 year ago to be with him at home more.
Oh, Susan! You have my complete sympathy and understanding. Your story is so very similar to ours. I hope you are getting support. I met 2 caregivers of younger onset loved ones in my support group. That really helped. You are right, there is not much out there about younger onset. I wasn’t even sure it was a “thing” until I researched. It makes you feel pretty alone. That’s the main reason I wanted to write about it.
What test should we ask for testing. And can a test determine the stage ?
The work up for Alzheimer’s disease is not simple and straight forward! Oh, I wish it was! I was going to put a link to a previous post I wrote about just this topic, but evidently I can’t link within my comment. Anyway, I recommend you look back at my post from 10/21/19 for a full discussion.
There is no test for the stage of Alzheimer’s. It’s more about seeing what the behaviors are, and fitting them into a stage. I found it wasn’t that clear cut though. Harvey could have some symptoms from one stage, but none of the others. This is a good idea for another blog post actually!
Thank you for posting about early Alzheimer’s.
My husband was diagnosed at 60. Lost his job.
I work full time as a nurse. A lumbar puncture was done. The fluid was sent to the Mayo Clinic.
What medication was Harvey given ?
Thank you again.
I am so sorry that you and your husband are going through this! Harvey was started on aricept (donepazil) at his first appointment. That’s not standard of care, but I’m thankful the neurologist did that. He was put on Namenda (memantine) one month later. Again, not standard of care because Namenda is approved for moderate to severe Alzheimer’s, but neurologists think starting both of these meds early gives the patient more good years, slowing the progression a bit.