How accurate are estimated time of stage 6 & 7 ?

Timmyd

When my DW was diagnosed with early onset (Oct 2021), we were told she was stage 4. Just recently I took a really close look at the clinical stages and it seems we are now clearly in the early part of stage 6. Last time I saw our social work was about a year ago and she said our rate of progression appears "typical". My DW is on donepezil and memantine.

Stage six apparently lasts about 2.5 years and stage 7 can be 1-3 years. For people who at or near the end of this, how accurate did you find these stage 6 & 7 estimates to be?

blacksparky

I am also curious about the time frame even though I realize that every one is different and pinpointing exact time frames is impossible. My DW has EOAD and was diagnosed at the age of 53. That was a little over two years ago and she is firmly into stage 6 now for the most part. By the time she was given the diagnosis, the doctor said that the Alzheimer’s probably started several years before. I also read somewhere that EOAD progresses quicker than age appropriate Alzheimer’s. We just take each day as a blessing together even though some days she doesn’t know my name. 🤔😋

Kat63

As others have stated, everyone is different and the stages are averages, but with my DH, he was officially diagnosed with Alzheimer’s the first of 2021. I took him once he did not know who I was (which scared me) and he was in stage 5. Four years later he is definitely late stage 6/early 7 and under hospice care. They say stage 5 is 1 1/2 years and stage 6 is 2 1/2 years, so for my DH that is what it has been. He is pretty much text book Alzheimer, slow steady decline.

Arrowhead

The stages themselves are not cut in stone. My wife started showing some symptoms of stage 6 back in stage 4. She's definitely in stage 7 now. The most frustrating thing about this disease is that you cannot predict what will happen, or when.

Quilting brings calm

mom went from stage 5 to death in just a few weeks- but I can’t say she died from dementia or from something else. Sheer will or COPD or old age.

Really there’s no way to tell. We have members here whose loved ones have been in stage 7 for years.

GothicGremlin

For my sister the stages were accurate-ish. She was also early-onset, diagnosed just shy of 59. She passed away at age 64, roughly 5 1/2 years. I definitely felt like what I'd read about people who have early-onset progressing quickly was true. Sometimes my head would just spin, it seemed so fast.

Stage 7 for her lasted only about 5 months. I'm grateful for that because stage 7 was pretty bad.

Vitruvius

My DW is now Stage 7f, the very end. She is 73 and was diagnosed in mid to late Stage 5, 4.5 years ago, October 2020. Her diagnosis was delayed due to the difficulty of getting an appointment during Covid. She has Semantic Dementia, an variant of FTD, not Alzheimer’s. The earlier Stages were different from Alzheimer’s, but Stages 6 & 7 seem to the same.

I have not seen her with her eyes open in months. She will likely be one to die directly from dementia. She will still eat if you tap her lip with a spoon, but other than that you would think she was comatose. So I would say mid/late Stage 5 to very close to the end in a bit less than five years. However this very end stage looks like it could go on for quite some time. The amount she eats is getting less each week and she is losing several pounds a month. Her muscles are severely contracted and she makes no movement on her own. Yet she hangs on and no one, not hospice or her MCF is willing to hazard a guess as to how much more time she has. Her MCF noted that they had several patients in the past that lingered on like this for several years. I hope for her sake that her misery will end soon.

mpang123

My dad has vascular dementia caused by a stroke a while ago but really started his dementia symptoms when he fractured his spine and had surgery. That was in January 31, 2023. His cognition and coordination went downhill fast. He had several falls that caused his entire right arm, elbow, pelvis and hip to fracture. He is now in stage 7, totally bed bound, double incontinent, has to be fed, crush his medicine and is treated for compression wounds in his back and foot. He can barely talk but still recognizes me and my mom and still has a good appetite. His quality of life is miserable and I wish he would go in peace soon.

elainechem

My hubby had early onset Alzheimer's disease. He had it for about 8 1/2 years. Stages 5 and 6 seemed to take forever. Somehow, he skipped stages 6d and 6e and went straight into stage 7a. He had been on hospice for six months when he had a massive seizure and died 8 days later. He was never confined to bed except for those final days. His death certificate lists Alzheimer's as his only cause of death.

charley0419

I’ll never understand stages or this illness, my wife diagnosed about about 3 yrs ago , mild dementia , she’s on donepezil and memantine but I’m thinking maybe stage 4-5 aside from not cooking anymore or driving has trouble telling time and gets confused at times does everything else a women does for her self, we go out every day somewhere or just a drive, can’t argue or raise voice as then that puts her in nasty mood for day but then comes around. Sometime think , and guess hope , that this is it but being on this site I do know better. I just wake up each day waiting for next change, I’m guessing it will be slow process for her by the way she’s 78 and anyone who meets her for first time have no clue she has Dementia. Like I always say this illness sucks the life out of person and caregivers. Together over 56 yrs and very hard to watch KEEP THE FAITH

harshedbuzz

@Timmyd

Those numbers are averages based on thousands of people with Alzheimer's. People with EO, vascular or mixed dementia typically progress more quickly.

Playing into this is that a PWD is considered to be in the latest stage for which they have any symptom/behavior even if they still have skills typically lost in prior stages. This makes it seem as if they're straddling stages— seemingly a stage 5 on a good day but full-on stage 6 on a bad one and possibly looking like stage 4 when showtiming. This can really play with a caregiver's head.

There are always outliers. My dad's overall progression arc (based on first mood changes in 2005) was about 11 years. For a lot of reasons beyond my control, he wasn't diagnosed with mixed dementia (ALZ and WKS) until December 2016 at age 82. At that point, he had a foot in stage 4 and one in 5. Nine months later, he was solidly in stage 6 based on my observations but could still score 25 (MCI) on MoCA. He remained in stage 6 for about 6 months before developing digestive issues that included silent aspiration despite being ambulatory and conversational. The swallowing issues, along with an increased rate of weight loss and inability to smile signaled stage 7 in the last 4-6 weeks of his life.

My aunt, who had vascular dementia clearly had some issues prior to the death of her DH in 2003 as he confessed to her sister on his deathbed. She was diagnosed in 2008 in stage 2 using a 3-stage model. I'd say stage 4-ish. She did follow the usual step/plateau progression of VD albeit slowly. She didn't seem to reach stage 6 until 2011 and hung out there until 2016. She died in 2018 a few months before my dad did. She also went through a couple of periods where she went off eating and drinking for as long as a week which felt like moving into a dying stage but then would resume again and return to her previous baseline.

HB