More About Younger Onset Alzheimer’s Disease

I want to follow up last week’s blog post with a discussion about some more of the unique challenges that someone who contracts dementia at a young age faces. As I said last week, younger onset Alzheimer’s disease follows the same trajectory as the more common older onset version. It looks like Alzheimer’s disease, but because of the patient’s age, there are some differences.

As in our family, the children of someone diagnosed with younger onset Alzheimer’s disease will probably be younger themselves, possibly still dependent on their parents for financial and emotional support. Not that it easy for adult aged children to care for their parents, but it is uniquely challenging for a teenager to help care for their parent with diminishing cognitive abilities. Young teens and children likely have little, if any, experience with the disease, and don’t  understand the trajectory that it will take. Choices about education, career, marriage, and where to settle are all made in light of the affected parent’s disability and the entire family’s needs. It is no small thing!

Another aspect that is difficult about having this disease at a young age is precisely because of that younger age. There are many agencies, benefits, and programs that are offered to people over the age of sixty-five. So even though a patient may have a disease more common to the older age group, they are excluded from certain services.

Our family experienced this on two separate occasions. When looking for a memory care unit for Harvey, we found many that were open only to residents over the age of sixty-five. One of the three units where he was eventually placed required  their board of directors to make a special allowance for his age. Thankfully, we knew someone on the board, and it wasn’t a problem.

Another place we faced this reverse age discrimination was in geriatric psychiatry units. Several units in town only accepted patients over the age of sixty-five, so we were limited in our choices here too. It really needed to be a geriatric psychiatry unit because staff there are specifically equipped to handle dementia. A regular psychiatry unit would not be appropriate.

Another difference our family experienced, and one that many families with a younger onset patient would, is the affected person’s relative strength and vitality. Indeed, because Harvey was physically strong, he could resist care quite forcefully, making him a more difficult resident to care for. Hence, the geriatric psychiatry visits. He never harmed anyone, but he could have done so easily. I have a friend from my support group whose husband was not much older than Harvey. This gentleman was a boxer in his youth, and he was very difficult to physically control. Obviously, this is not a problem exclusive to the younger onset patients, just more common.

It is not that younger onset Alzheimer’s disease is a worse condition than the more common older onset variety; a younger aged patient just experiences some unique difficulties.