Life expectancy

jehifer · August 11

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.

Goodlife2025 · August 11

There is early on set and there is REALLY early on set and EVERYONE progresses at their own pace. My spouse diagnosed at age 48 (stage 4) is now 49 and in full on stage 5. I think she is progressing approximately one stage every 7-12 months.

harshedbuzz · August 11

@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 · August 11

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 · August 11

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

blacksparky · August 11

My DW was diagnosed in 2023 with EOAD at the age of 53. We were also told that the Alzheimer’s probably started several years before diagnosed. I’m thinking she was at stage 3 then. She is now late stage 5 with a foot into stage 6. She lost all of her IADL’s very soon after the diagnoses. She could no longer handle finances, driving, using home appliances, etc. Now 2 years in, she needs help showering and getting dressed. She still physically can walk but at a lot slower pace. Also this summer, she started to wander and can’t walk by herself anymore because she gets lost. I’ve had to secure our doors with alarms and locks to keep her from leaving. This doesn’t happen often though. I intend to keep her home as long as I can but plan B is a certified nursery facility. As everybody previously stated, everyone advances at a different pace, but I’m thinking with my DW she is closer to the 4 -7 years after diagnoses.
My advice to you is to read all you can about this disease and definitely use this feed as a great resource from fellow caregivers who totally understand what you are going through.

blacksparky · August 11

Also I forgot to mention for you is to get all your legal paperwork completed while your LO can still make decisions. If you haven’t contacted an elder law attorney, definitely worth the money to help you get everything in order.

BPS · August 11

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 · August 11

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

dayn2nite2 · August 11

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.

Bill_2001 · August 12

Hi Jehifer,

I have long given up on a calendar timeline. I use the 7-stage model for Alzheimer's and dementia to help me plan and cope with behaviors and expectations. Every dementia patient is different. Early into this disaster, I would never had dreamed she would go 9+ years with no end in sight. Sadly, there is no reliable way to predict progress in months and years, but the Staging model works well. As others on this site will attest, our loved one may progress quickly or at a tortuous slow pace.

Instead of reconciling with a calendar (which really has no meaning here), my wife's symptoms place her well into Stage 6. With that knowledge, I can plan and manage her as best I can. All I can hope for is that the next stage will not last long.

By the way, I usually call Stage 4 "The Cliff" or "The Wall." This is the stage when caregivers panic and know something is terribly wrong, and are searching for help.

Love Bill_2001

Stages listed below are from the site: Understanding the Seven Stages of Dementia - NCCDP

Stage 1: No Cognitive Decline

At this stage, there are no noticeable symptoms. The individual functions normally and shows no signs of memory loss or cognitive impairment. This stage is often identified retrospectively.

Stage 2: Very Mild Cognitive Decline (Age-Associated Memory Impairment)

Subtle memory lapses may occur, such as forgetting familiar words or the location of everyday objects. These changes are generally not detected during medical examinations or by family and friends.

Stage 3: Mild Cognitive Decline (Mild Cognitive Impairment)

Individuals may experience increased forgetfulness, slight difficulty concentrating, and challenges with word-finding. Friends and family may begin to notice changes. Clinical tests may reveal measurable deficits. This stage typically lasts 2–7 years (Alzheimer’s Association, 2024).

Stage 4: Moderate Cognitive Decline (Mild Dementia)

At this point, a formal diagnosis of dementia is often made. Symptoms include clear-cut memory loss, trouble managing finances, disorientation to time and place, and difficulty performing complex tasks. Patients may withdraw socially due to increasing awareness of their cognitive deficits. Duration can range from 2 to 4 years (Reisberg et al., 1982).

Stage 5: Moderately Severe Cognitive Decline (Moderate Dementia)

Assistance with daily activities becomes necessary. Individuals may forget personal information such as their address or phone number and may become confused about time or location. While they can usually still identify close family members, memory gaps become more pronounced.

Stage 6: Severe Cognitive Decline (Moderately Severe Dementia)

Memory difficulties worsen considerably, including forgetting the names of spouses or caregivers. Individuals may require help with dressing, bathing, and toileting. Personality changes, delusions, compulsions, or agitation may emerge. This stage often lasts about 2.5 years (DeFina et al., 2013).

Stage 7: Very Severe Cognitive Decline (Severe Dementia)

This final stage is characterized by loss of verbal abilities, inability to walk or sit without assistance, and total dependence on caregivers. Individuals may lose the ability to smile or hold their head up. Life expectancy at this stage varies but often ranges from 1 to 2.5 years (Mitchell et al., 2009).

CassLoftis · August 14

https://alzconnected.org/discussion/73742/life-expectancy

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 · August 15

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 · August 15

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 · August 15

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.

JoseyWales · August 16

My DH was diagnosed at age 51, when he was heading into stage 5. Doctors refused to diagnose any earlier. He had symptoms in his mid 40s. We're here 10 years later after an official diagnosis, about 16 years after he first started noticing problems.

He's currently in a facility, has been at stage 7 for about 2 years now. On hospice for nearly 3 years, and I'm expecting them to kick him off soon. There's been no decline in a while, just a steady, horrible life of no reaction to his environment at all.

Karen711 · August 16

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

Life expectancy

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