How long did your loved ones stay in stage 5, 6, and 7?

hiya

I’ve read Tam Cummings staging and estimated duration of each. I’m curious as to everyone’s experience here on the time your LO’s spent in each of these stages? My DH went through 3 and 4 fast (just over a year) and is a solid 5 now with a couple of cognitive areas in 6.
Do most make it to 7? I can handle a lot but am dreading incontinence which I feel will be what pushes my thoughts to MC.
thank you for sharing your experiences and being supportive to all

AnnieTB

Hi- I’m not familiar with Tam Cummings, but would be most interested…which scale are you referencing? Do you have a link? Thank you.

Hope5757

It differs with the PWD. But the Tam Cummings chart gives general guidelines.

In my limited experience with my MIL, it took her about 14 months to go from 4 to early 5. Then back to back to back hospitalizations put us squarely in the late 5/ 6 stage within a few short weeks.

@AnnieTB - https://www.tamcummings.com/tools/

GothicGremlin

My sister was diagnosed with early onset Alzheimer's/FTD in 2018 at age 59. Looking back, I think she was probably earlier stage 4 when she was diagnosed. By this last November, maybe as early as mid-October, she was in early stage 7. She passed away in early March of this year, and was probably mid-stage 7. Less than 6 years.

Early onset people seem to progress faster than those who are diagnosed later on, at least that's what I've read.

The way it felt to me was that stages 4 and 5 went by a little more slowly, while stages 6 and 7 moved quickly.

M1

hiya i do think the duration of stages is quite variable, depending on age at diagnosis and other health conditions. My partner started showing definite signs in 2014 at age 73, but remained relatively mild and functional (stage 3-4) until 2020. Progressed rapidly into stage 5 by 2022 and now solidly in stage 6. Average lifespan from onset of symptoms until death is 11 years, which we are now approaching. Early onset clearly moves faster.

hiya

https://alzconnected.org/discussion/comment/209152#Comment_209152

you may be able to put it in the search bar on this site and find the link. If not, google Tam Cummings DBAT

fmb

DH (age 92) was in late Stage 5/early Stage 6 when he was diagnosed last July. He had had a stroke on June 15 and also has congestive heart failure. Firmly in Stage 6 by mid-October, Stage 7 by late November after a severe UTI, fall with broken ribs and internal bleeding and being hospitalized and in rehab for four weeks. Is losing weight rapidly and just went through 10 days of decline from either another UTI or stroke (or both), though he has rallied somewhat in the past day or so. Having multiple co-morbidities definitely hastened the advancement of his dementia symptoms, though it is hard to say exactly how much is due to ALZ and how much is due to stroke damage.

DTSbuddy

My DH aged 78 was diagnosed in June three years ago, some symptoms a year before that. Now he displays most of Tam Cumings DBAT behavioral characteristics for stage 6 and many but not all for stage 5. His physical health is very good, except for the brain. Would it be good to know what is coming? It might make planning easier. I just take it day by day now. Most recent surprises are putting on my clothes over his, and dumping lunch remainders off the porch into the yard, and spreading the contents linen cupboards al over the floor, ripping up photos, emptying bowels into bathroom wastebasket, ignoring his kids when they call and talking over them (nonsensically,), wandering in the middle of the night. eating butter by the half cube and anything sweet, opening & shutting cupboard doors, folding things. Day by day.

concerned_sister

hiya, how old was your loved one when diagnosed? Have you been dealing with early onset?

SSHarkey

My DH was diagnosed in 2018 at age 70, probably a solid stage 3. He’s gone through stage 4 and just now beginning to shift back in forth into 5. It’s been a long, slow decline, which has been fortunate.

harshedbuzz

IME, this can be all over the place. Two factors that seem to impact progression are age of onset (EO is typically a faster progression) and type of dementia (VD tends to progress a bit faster than Alz, mixed dementia can be quicker than Alz)

The rule of thumb is that a PWD is considered to be in the latest stage for which they have a symptom/behavior. It is very common for a PWD to seemingly straddle 2 or even 3 stages at once. Unless the PWD dies from something else first, they will progress to stage 7.

Six years ago, I lost 4 PWD in the space of about 12 months. What struck me was that while they all had the same outcome, each took a different path to that end.

Aunt C was the first to be diagnosed. She was in her 80s at the time and had likely been showing signs for a couple years before her DH died in 2002. Initially she was diagnosed with VD but in the last 5 years her geriatrician felt she'd also developed Alz. She progressed very slowly and died in the early hours of 2018.

Dad was the second diagnosed. He was in his 80s when diagnosed with mixed dementia (Alz and WKS) at the end of 2016. My mom fought me for over a decade around having dad evaluated. I saw changes in his personality in 2005 and significant memory problems by 2008. He progressed pretty slowly initially but I would say stage 5 lasted about 18 months and stage 6 about a year. While he was fairly mobile and conversational the last week of his life, his face and body seemed changed. I suspect this was a transition to stage 7. He died in spring 2018 of aspiration pneumonia which is a common stage 7 complication.

Aunt N was in her early 90s when she was diagnosed with VD in the summer of 2016. I would guess she was about stage 4-5 at that time. Like dad, she was diagnosed on the later side as her caregiving daughter is deaf and the ASL communication between her and doctors was not ideal. N was placed in an AL facility where she crashed and burned socially. The week she was scheduled to move to MC, she had a fall which broke her hip and spiraled her into a solid stage 7. She only lived another couple of months passing in fall 2017.

My friend's mom was diagnosed with Alzheimer's at 90 in 2017. She developed breast cancer within the year and the decision was made not to treat it as mom had declined mammograms once she hit 80 saying she would not treat a positive result having cared from friends and sisters with the disease. She passed in fall of 2018 in stage 6 of Alzheimer's likely from the cancer.

HB

MN Chickadee

My LO had a long run up to diagnosis - she knew she had memory loss and had a hard time getting a doctor to take it seriously because she was in her late 50s. She was probably in the MCI category for at least 5 years. Then she spent approximately 3 years in stages 4,5, & 6. She had just entered stage 7 when she got covid and didn't recover, passed a month later. In stage 7 all kinds of things can take them because they are so fragile. An infection, a fall, pneumonia etc. If your LO has any other health conditions it would play into their dementia journey and possibly hasten the final act. The Tam Cummings tool is based on averages but many spend more or less time in those stages. We had to move mom to MC a few months after incontinence set in, it was very difficult to manage at home. You are wise to think about it now and make a plan.

hiya

https://alzconnected.org/discussion/comment/209189#Comment_209189

DH was 71 when diagnosed but memory issues for several years prior

Jeanne C.

My husband was diagnosed FTDbv in January 2023, age 64, at stage 5. By Fall of 2023, he was exhibiting stage 6 symptoms. He's fully in stage 6 now with a toe in stage 7.

@AnnieTB we've collected a lot of helpful information, including Tam Cummings documents and links, here:

https://alzconnected.org/group/32-new-caregiver-help

Quilting brings calm

Mom was diagnosed in spring 2021 as having MCI - although I felt she was in stage 4. She’d had memory issues for at least three years prior. With a bout of UTi/urosepsis in 2019 that made it seem as if she was at stage 6.
I’ve been seeing some stage 5 symptoms with incontinence the last year. That was originally felt to be medication related, but has increased the last few months without the offending medication. I’m now seeing the stage 5 difficulty in ordering at a restaurant etc.

LaneyG

DH diagnosed with MCI in 2017. It is 8 years later and he is on Stage 4 and has been for about 2-3 years. He is showing some Stage 5 symptoms.

Crushed

DW was MCI in 2010 at age 58 ALZ diagnosis 2012 Gradual decline to 2017 when psychosis put her in MC Lost all idea of who I was by 2018 Walked until 2021 Late stage 7 now in 2024 She is 72

14 years on this miserable road.