How long did your loved ones stay in stage 5, 6, and 7?
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
Comments
-
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.
0 -
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 -
0 -
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.
3 -
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.
0 -
you may be able to put it in the search bar on this site and find the link. If not, google Tam Cummings DBAT
0 -
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.
3 -
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.
6 -
hiya, how old was your loved one when diagnosed? Have you been dealing with early onset?
0 -
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.
0 -
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.
HB2 -
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.
3 -
DH was 71 when diagnosed but memory issues for several years prior
0 -
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
2 -
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.1 -
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.
0 -
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.6 -
I’m afraid my DH will live forever! He’s 82, diagnosed at 80, symptoms for many years before diagnosis. I’d say he is past stage 5 and has some stage 6 symptoms. He had a heart incident in March… inconclusive…passed out…could have been a fall, dehydration, or some minor heart event. In hospital for 2-3 days. I couldn’t leave him there. He was completely delirious. I sat in a chair for three days. He would have been wrestled, sedated, and moved to a psych ward had I left him. (It gave me an idea of how difficult placement might be.) Otherwise his bp & cholesterol is good. He’s physically healthy.
I say I’m afraid he’ll live forever b/c while I can manage a few more years of caregiving, I cannot imagine 10-20! I gave up work, I feel like a prisoner, despite making lots of adjustments etc. to optimize our situation. I really need to work or I’ll be on public assistance for the rest of my life. That’s not what I planned. I’ll be totally dependent on my children. That’s not what I want.
6 -
I am nine-plus years into this nightmare we call caregiving. All timelines are anecdotal at best and guesses at worst. Each case is different, and even the experts and doctors cannot give me even a vague estimate of how long this will go on. My dear wife was given "about two more years to live" seven years ago.
Being the over-planner that I am, I have every reason to believe that this journey could take 20 years to unfold. But even that is only a pessimistic guess. It is a terrifying thought, but I never dreamed I would still be a prisoner to caregiving in 2024. This will be our 10th Christmas inside the walls of dementia. Caregiving has cost me my entire 50s. Friends and family travel, plan retirement, and attend grandkids events; I change adult diapers.
I use the seven-stage model when discussing my wife's progression: She is in Stage 6, based upon the majority of symptoms that she exhibits. On her good days, she behaves more like Stage 5. Bad days manifest some Stage 7 symptoms. I find the seven-stage model helpful in tracking the progression of her dementia.
To answer your question, here are my estimates for my wife's progression so far:
Stages 1 and 2 are not really noticeable.
Stage 3 began 2013.
Stage 4 began 2015 (caregiving began).
Stage 5 began 2018.
Stage 6a began 2019.
Stage 6b began 2020.
Stage 6c began 2020.
Stage 6d began 2020.
Stage 6e began 2022.
Stage 7a seems to be dawning in 2024, but I am never sure until after the fact when I can review all the symptoms more clearly.
Stay Strong, Bill_2001
12 -
Dear Bill,
Thank you for your response. I’ve followed your posts looking for someone who might be ahead of me in this journey & experiencing similar things. I will try to send you a private message. I have a few questions. I know you were considering retiring early and you were calculating the cost of care versus the cost of retirement.
1 -
I’m so sorry.
0 -
Do you still work outside the home? Do you have help at home?
0 -
Hi AlzWife2023,
My solutions are piece-meal and temporary and must be re-evaluated and updated regularly. The earlier stages were actually more difficult as I had to let go of the denial and accept that the future we had planned would never come to pass.
Read my post The Cavalry Is Not Coming when you get a chance.
Paid care is very expensive and quite frankly is out of reach for most people. Memory care homes and nursing homes cost $100k/year or more, so most residents are either very well off, or broke (Medicaid). We have every right to be terrified.
I am a very logical guy and made up my mind to solve this problem one day at a time, using several solutions all working together.
1 - Adult Day Care. My wife attends adult day care 3 times per week so that I can go to work. Cost is less than $2k/month. Still expensive but I decided that I HAD to make it work.
2 - My boss. I asked to work from home the other 2 days per week. You never know, so you have to ask. I also asked for the latitude to work from home on any day that my wife was uncooperative or having an episode.
3 - Technology. Spend money on any technology that will help you. A few hundred dollars on cameras or few thousand on home renovations for accessibility are still FAR CHEAPER than a nursing home.
4 - Make things easier for yourself. De-clutter. Organize. Get finances in order. See income and expenses in a new light - survival.
5 - Accept that a nursing home or memory care may be inevitable, but if you can delay it, you can save yourself money and have more time to prepare for it.
6 - Dementia-proof your home. Look for hazards and eliminate them. Take the knobs off the stovetop burners. Learn to use the child-proofing codes on the microwave, etc.
7 - Sadly there is no easy solution for the heartbreak and the death of our future together. Seek counseling or the comfort of friends and family. Accept that your planned future with your loved one will no longer be.
Love Bill_2001
6 -
This is incredibly helpful. I think our approach has been and will continue to be piecemeal. My DH is on Medicaid already so we need to investigate facilities for the potential eventuality of placement. Not something we want to do but it’s better to have some ideas for when the time comes that it’s unavoidable.
I still don’t understand if he currently qualifies medically for placement or not. His doctor just signed permanent disability paperwork to discharge a loan and said he can’t be left alone. I don’t understand how much home care he’s entitled to. A very young inexperienced case worker came here and told us she could send a foot nurse…that’s it. We get that service already from out local council on aging. It’s $35. She said, oh you won’t have to pay for this! I said I think it could interfere with the Adult Foster Care stipend he’s getting (I get paid to care for him…we’re not legally married. It’s 1520/mo for 24 hour care). Anyway, that Foster Care payment/arrangement had tides us over since March. I could work outside the house as long as some one is here with him (our son is living with us temporarily & works from home). Also, DH can go to adult day care and still receive the stipend. We are in MA btw. The only adult day care is an hour drive, but their social worker said they could provide transportation. It may be time to talk to her again & maybe do two or three days of daycare. It’s definitely time throw the money on the table for an elder attorney. I have done all the paperwork myself thus far: Medicaid, Adult foster care, DPOA, but we need a will (he has virtually no assess—we’re not married & I own the house). But I need to set up a trust for royalties he might receive in the future in perpetuity. Also, I want to know what he’s entitled to for care b/c the county elder care service sent a child out here and that was not helpful. She kept saying it’s her first year so she didn’t know the answer to this or that question.
I had thought that I can’t work outside the house and deal with daycare or home care & be the night & weekend nurse, but daycare is starting to sound like a good idea & working more is definitely sounding like a good idea if I can keep the foster care stipend too. It seems like the only idea right now b/c I’m 100% sure we can’t get home care & foster care. I wish there were an adult daycare closer!Bill, seeing how you piece things together has been very helpful since I’m having a family meeting with my two oldest kids tomorrow —for the first time really— to talk about the future from a place of relative calm rather than chaos and panic. Now I’ve got some concrete ideas to float. One thing I have to remember (to quote a President) is that I am the decider. I am asking for help, input, and asking about their needs and preferences, but I’m not asking them to come up with the solutions or make the decisions. It’s been a family/group effort but I’m the leader. I’m strong enough now.
❤️
1 -
Hi AlzWife2023,
It sounds like you are putting together a good plan. Don't hesitate to change it around as you learn what works. Even though daycare is an hour away, you may still want to take advantage of the transportation and try it one day a week to start. It will give you a break and allow other professionals to give you advice. You may need to go with him the first time; ask them about it.
The foster care stipend is great. Most caregivers that still have their loved one at home have a mix of solutions. Part time care, adult day care, help from family, etc. It is still hard but once you have a "system" that works, stick with it for a while until you have to make a change. Then, it's back to the drawing board.
Also, never stop researching and asking for help, advice, and counsel. Even a small change can have major benefits. For example, when I would help my wife in and out of the bathtub/shower, she would resist. Another caregiver suggested that I put a piece of black electrical tape along the perimeter of the bathtub. Getting her in and out of it has not been a problem since then. I have no idea why it works, but it does!
Love Bill_2001
1 -
DRUMROLL PLEASE: I called the daycare (PACE program) today after reading your previous posts & messages @Bill_2001 and I am so excited. I'll be visiting on Wednesday and I'll update everyone. They say it will take until February to get all the paperwork and enrollment done so I am very glad I started the ball rolling.
I think it could be a very good thing. As long as I get some me time I can handle caregiving. I love him.
They will change the AFC provider and he'll get a new doctor but that's fine. I am crossing my fingers that the AFC payment will go up. There's variation in how much each agency provides.
3 -
Great AlzWife2023! I am glad we were able to help. That's why we are here!
As we said in the 70s, Keep On Truckin'! Keep an open mind and if something changes, take a breath and think it through.
We are here for you.
Love Bill_2001
2 -
These comments have been very helpful-thanks to all. The stages provide good examples, but the different pace of each LO makes it less definitive than I wish it was. Noting how long the stages might last is helpful, but again, there is a lot of ambiguity. Still, the stages are useful to me. DW is likely in stage 4 now, with some traces of early stage 5. It was en eye opener to see that at some point in stage 5 a MC facility is suggested. My plan/hope is for her to stay at home later than that. We'll see, I guess.
0 -
My DW was officially diganosed around 2021 but had shown symptoms since 2017 - 2018.
She is now, without a doubt, stage 7 and seems to be declining fairly quickly.
Stages 5-6 were by far the hardest with severe behaviorial issues playing out for what seemed an enternity 3-4 years, maybe longer.
Late stage 6 I placed her in MC. She has been there about 7-8 mos now. I thought I was going to lose her a few weeks ago when she was unresponsive for several hours but slowly started coming out of it. Hospice placed her on morphine and comfort care but by the next day she was back to a lower baseline and returned to her normal meds. She sleeps much more now and when I'm there everyday she sleeps on me but in the afternoons still has sundowning episodes where she is quite emotional.
I don't know much longer she has but I think she will digress to late stage seven or 8 fairly quickly. She can't walk, can barely speak coherent words, can't feed herself most days. I think stage 8 will arive in less than a year according to hospice.4 -
Hi Bill,
I am new in this group and also in taking care of my DH who has probable CAA and VD since 2022.
We want to stay at home since I have been working in healthcare for more than 12 years and i don’t want him to end up in an MC. He has a long term care insurance which we haven’t used yet (I still work part time/2 days a week). As much as I want to use his insurance, i don’t want to do that yet since his daughter and ex wife have bad perception on me and has labeled me as a gold digger. So as much as possible, I want to have money on my own.
Thank you,
Dolly
2 -
I feel ya! As long as you are the one taking care of him, all others have NO say. I too have have had that label, BUT I do all the care taking..they are sideline commentators and comments mean nothing to me. HE is my priority not what they think, and he is well taken care of!
0
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
Categories
- All Categories
- 473 Living With Alzheimer's or Dementia
- 239 I Am Living With Alzheimer's or Other Dementia
- 234 I Am Living With Younger Onset Alzheimer's
- 14.1K Supporting Someone Living with Dementia
- 5.2K I Am a Caregiver (General Topics)
- 6.8K Caring For a Spouse or Partner
- 1.8K Caring for a Parent
- 156 Caring Long Distance
- 104 Supporting Those Who Have Lost Someone
- 11 Discusiones en Español
- 2 Vivir con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer de Inicio Más Joven
- 9 Prestación de Cuidado
- 2 Soy Cuidador (Temas Generales)
- 6 Cuidar de un Padre
- 22 ALZConnected Resources
- View Discussions For People Living with Dementia
- View Discussions for Caregivers
- Discusiones en Español
- Browse All Discussions
- Dementia Resources
- 6 Account Assistance
- 16 Help