Caregivers: Early Onset Alzheimer's, diagnosis age 19 to 65

My 59 yo husband has recently been diagnosed with early-onset Alzheimer's. I work full time and he does not yet need constant care, but I know that day will come. I am hoping to connect with someone in a similar place to talk about our fears and realities.
Are there any virtual support groups for spouses?
Thanks for any insight.

Hi, ALZConnected from the Alzheimer's Association is a free online community where people living with Alzheimer’s, caregivers, families and friends can ask questions, get advice and find support. The link is https://alzconnected.org/ . There may be a local chapter in your area too, see https://www.alz.org/local_resources/find_your_local_chapter . And they offer support groups for caregivers and individuals living with Alzheimer's or other dementia. All support groups are facilitated by trained individuals. Both in-person and virtual support groups are offered. See https://www.alz.org/events/event_search?etid=2&cid=0 .

You might also find this health topics page useful: https://medlineplus.gov/alzheimerscaregivers.html .

Lastly, I posted this previously but it may help you also to suggest a book titled The 36-Hour Day, 6th edition. Originally released 36 years ago, this latest edition continues to provide relevant, practical, and up-to-date advice to those providing care to an individual with memory loss and still serves as the gold-standard care guide for dementia caregivers. If you haven't read it already it likely is available to borrow from your local public library to see if it may have some suggestions for you as well.


The authors describe in detail the changed behaviors a person may show, and suggests plans of action toward dealing with these behaviors to decrease stress in both the caregiver and the person who has dementia. It teaches financial literacy as applied to eldercare. Options such as adult daycare, at-home caregivers, and assisted living are analyzed, empowering the reader to make informed choices.

The authors also discuss the complex emotions that run through the heads of those who have dementia, includes redirection techniques, and emphasizes the importance of patience and empathy with those afflicted. It also enriches understanding of the biological components of memory loss to help one better understand the science of why people with dementia act the way they do. Many caregivers can benefit from the authors' study of the condition and how people can continue to thrive through it.

I hope some of this information is helpful to you.

Hi Milomiles,
I am going through a similar situation with the early diagnosis of a spouse and look for someone to chat with. (My husband was diagnosed at age 64 so he retired before he wanted to. Not only was the reality of the diagnosis difficult, but I think it was a bit embarrassing for him to let his partners know.)
I wonder if there will come a time when this becomes something we will get used to. Every morning I wake up and then this dread state comes rushing back and it is shocking and anxiety laden all over again. I wonder if this will ever become our normal.

My wife was diagnosed with Early onset Alzheimer's at the age of 54. She has been dealing with this disease for 5 years now. She is in stage 6 currently. She doesn't remember her children most of the time. She doesn't remember that we are married and have been for 39 years. Her cognitive decline has greatly diminished, as well as her ability to perform simple tasks. I bathe her for the most part and cannot leave her sight. Actually, she doesn't allow me to leave her sight. Which is just fine with me. My wife has incontinence issues but not to the point of wearing diapers full time. My wife doesn't have behavioral issues and I give all the glory and credit to God/Jesus as I pray often that He will keep her calm. We are very compatible. One thing I've learned is that I don't have to be a control freak and not allow her to repeat activities that she has already done recently. For example, my wife might take anywhere from 2 to 5 showers in a 2 to 3 hour period of time daily. I don't tell her she already took one. Because she has no idea that she did. Plus, it's no big deal. I just role with what she wants to do ( within limits). Saves a ton of anxiety and heart ache. My biggest support is God. He is my strength, my hope, and my life. I hope your journey is a blessed one. Even though this disease is an ongoing grief process, it can still bring many moments of joy and happiness. God bless.

Thanks for responding. I completely understand the dread feeling - mine starts when I am driving home from work. I know the day will come when I need to be home with him and I am just so scared and uncertain of everything. He has also been embarrassed by his diagnosis. My husband has always been the smartest man in the room - everyone would hand him their phone or call him for their tech problems. This is just such a devastating disease.
I will send you a private message if I can figure out how and maybe we can set up a call sometime?

@greff - you sound like such a kind and compassionate husband and your wife is so fortunate to have you. It also sounds like your faith gives you tremendous strength. Thank you for sharing your journey, it helps to know that 5 years is possible and that the moments can be beautiful.

@ilikegreen - thanks so much for this information. It is really helpful and I just downloaded the audio version of the 36-hour day...since physically reading a book has become difficult. Much appreciate you taking the time to send all of this information.

We are seen at Mayo-Jacksonville. Are there any other Early Onset families?

Great idea! I passed the information along to the Dementia support group I belong to locally. We have a couple of people whose loved ones who have this diagnosis.

Hello! My husband is being seen at Mayo Jacksonville as well. He is 53 and I am 46. He doesn’t have a diagnosis yet - still doing testing. It’s strange because some of it points to EOAD (hypometabolism in parietal and temporal lines and precuneus; memory loss, trouble with executive functioning, abnormally low abeta42, unable to work as an attorney), but then other things don’t point to EOAD (no amyloid plaques, normal ptau/abeta42 ratio), so it’s strange. Definitely impacting our day-to-day life though. My husband is seeing Dr. Taner.

What is your situation?