Have any questions about how to use the community? Check out the Help Discussion.

Life expectancy

Hello. My husband received a diagnosis of early onset alzheimers. He has lots of questions, one which is about life expectancy. Reading between 4 years to 20. How long after diagnosis do people with early onset alzheiners need more care.

Comments

  • harshedbuzz
    harshedbuzz Member Posts: 6,274
    Ninth Anniversary 1,500 Insightfuls Reactions 1,500 Likes 5000 Comments
    Member

    @jehifer

    Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

    Every PWD will progress at their own rate. Specific to EO Alzheimer's, on one hand it does tend to progress more rapidly than in older individuals, but there is less likelihood of a co-existing condition to cause death before the end stages of Alzheimer's.

    These averages don't always reflect the lived experience here. There is a poster "Crushed" whose DW had EO Alzheimer's who passed recently. She had symptoms in her late 50s/early 60s and was in stage 5 or 6 when I joined this site 8 years ago. He placed her about a year or 2 into my time here when her care began impacting his health.

    HB

  • cdgbdr
    cdgbdr Member Posts: 303
    100 Care Reactions 100 Likes 100 Comments 25 Insightfuls Reactions
    Member

    So sorry for you and DH.

    My DH was formally diagnosed in 2024 at age 72. He had been having issues for years that we now see as the dementia rather than just a difficult personality. He is now progressing and I plan to have him admitted to memory care in the next 1-2 weeks. He needs 24/7 supervision.I think this has been going on for 8-10 years in hindsight. Once it became impossible for me to rationalize it away, he has progressed from needing part time companionship to full time supervision and assistance with most everything in one year.

  • PlentyQuiet
    PlentyQuiet Member Posts: 146
    Fourth Anniversary 100 Care Reactions 100 Comments 25 Insightfuls Reactions
    Member

    DH was diagnosed in 2021 by lumbar puncture at the MCI stage. Age 60. Last month we moved into hospice.

  • BPS
    BPS Member Posts: 435
    500 Care Reactions 250 Insightfuls Reactions 250 Likes 100 Comments
    Member

    My wife diagnosed about nine and a half hears ago at age 62. She was pretty early stage. She did pretty good for a while but slowly declined. She has not driven in over four years. That was longer than she should have. She willingly gave up her license after having two small accidents. She hasn't been able to manage her medications for four years or cooked in three years. She is late stage six and has been in MC for 16 months after having a stroke.

  • cdgbdr
    cdgbdr Member Posts: 303
    100 Care Reactions 100 Likes 100 Comments 25 Insightfuls Reactions
    Member

    Great advice about the paperwork. We had ours done 8/15 last year. He has steadily declined since then.

  • dayn2nite2
    dayn2nite2 Member Posts: 1,183
    Ninth Anniversary 1000 Comments 100 Insightfuls Reactions 25 Care Reactions
    Member

    My mom had symptoms/events around 60, was not diagnosed until 65, died at 70 in mid-stage 7 (almost the end anyway) after having a heart attack.

  • CassLoftis
    CassLoftis Member Posts: 22
    10 Comments 5 Care Reactions
    Member

    The truth is, there is no set timeline. My husband read up on it when he was first diagnosed 9 years ago and he thought he only had 4-8 years. He is relatively healthy otherwise and I expect we have a long journey still ahead of us.

  • Carl46
    Carl46 Member Posts: 1,450
    500 Care Reactions 1000 Comments 500 Likes 250 Insightfuls Reactions
    Member

    There is no way of predicting how the disease will progress. I found that I just had to watch her, because ever so often I would realize that she could no longer do things she had done all her adult life.

    I started ordering her medication refills for her. Later I helped her fill her weekly med box. Then I filled it for her. Then I reminded her to take them. Then I watched to be sure she took her meds and not mine. Then I persuaded her to take her meds . . .

  • Quilting brings calm
    Quilting brings calm Member Posts: 3,101
    1,000 Likes 2500 Comments Fifth Anniversary 500 Insightfuls Reactions
    Member

    True early onset ( meaning under age 65) sometimes progresses more rapidly than in people diagnosed over age 65. If you mean early stage instead, that refers to the fact that the diagnosis is being made when the person is at the beginning stages of dementia. I have found the charts at dementiacarecentral.com to be helpful. They discuss symptoms at each stage, and also show average duration of each stage. Different types of dementia progress at different rates. Alzheimer’s patients live about 10 years after diagnosis. But keep in mind that’s an average. Some live much longer than that. Crushed, a member here, lost his wife 17 years after diagnosis.

    All you can do is try to provide the best care for whatever stage they are at as they go along. That does not mean you have to be the 24:7 caregiver until death. Facilities are a valuable care tool once the needed care goes beyond one person’s capabilities.

  • Belle60
    Belle60 Member Posts: 107
    Second Anniversary 25 Likes 25 Care Reactions 10 Comments
    Member

    Agree with all the advice above. Everyone moves at a different pace. My DH was diagnosed at 55 but 11 years later he has reached stage 5. He is relatively healthy so that may impact his progression. I always heard when you meet one person with dementia, you meet one person. Go with the flow.

  • Karen711
    Karen711 Member Posts: 238
    100 Care Reactions 100 Likes 100 Comments Second Anniversary
    Member

    Jehifer-My wife showed mild signs of memory lapses back in 2010 at the age of 55, but was only diagnosed with Alz in January of 2024 as “late early stage to early middle stage” (neurologist using 3 stage scale), which I thought at the time the Dr underestimated. It took that long to diagnose due to her anosognosia, so very tricky to get her tested. She has now reached stage 6 with some exceptions, her personal ADLs are largely intact but beginning to diminish. She still remembers who I am but hasn’t said my name in I can’t remember how long. She can’t remember anyone else’s name. It seems to me that while her symptoms have evolved slowly, the stages have shared symptoms with other stages sort of like a Venn diagram. For the better part of these past 15 years the progression seemed to move, to use Bill’s word, torturously slow, and she was able to work up until 2018. Now since stepping into stage 6, I can see her progression speeding up. I recognized she could not be left alone while she was in stage 5 but I could only convince her we needed a caregiver when I suffered a health crisis of my own and so it was obvious to her that I was the one that needed help and so it was ok. I could have used the caregiver help at least a year or two earlier in early stage 5. I know I am preaching to the choir here but that anosognosia is a beast!! Everyone’s story here is so heartbreaking.
    Love to All

    Karen

  • SDianeL
    SDianeL Member Posts: 3,155
    1,500 Likes 1,000 Insightfuls Reactions 2500 Comments 1,000 Care Reactions
    Member

    welcome. So glad you found this group but sorry for the reason. You have replied to an older post from 2025. You will get more replies if you copy and paste this to a new post with a new subject line. To do that, click on the plus sign at the bottom of the page. Your feelings are common. This disease steals so much from us. It’s called anticipatory grief. Your relationship changes. He’s no longer your spouse or companion. It helped me to begin thinking of my husband as my patient and me his nurse. Took some of the emotion out of me caring for him. I stopped being angry. First get your legal affairs in order. DPOA, etc. see an elder care attorney asap. Second, read the book “The 36 Hour Day” and search online for dementia caregiving videos by Teepa Snow or Tam Cummings. They are very helpful. And lastly, he should not be driving. There are more things than memory affected by Alzheimer’s including visuospatial difficulties with speed and distance. With a diagnosis in his medical records, if he’s in an accident his insurance could refuse to pay and you could be sued and lose everything. There are many posts about driving on this forum. You can search old posts. The search thingy is at the top of the page. Come back often for info and support or to vent. We know how you feel. 💜

  • countrywife
    countrywife Member Posts: 24
    25 Care Reactions 10 Comments 5 Insightfuls Reactions 5 Likes
    Member
    edited 1:24AM

    Ziggy, would you be willing to share what alternative therapies you tried? How wonderful to find something helpful.

  • Deepsea
    Deepsea Member Posts: 21
    10 Comments 5 Care Reactions 5 Likes
    Member

    Hi, I came across your question and I’m also interested, would you mind sharing the alternative therapies ziggy tried if she ever get back to you ? It’s really encouraging to hear something has been helpful, and I’d love to learn more when you reply 

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more