Why do some people progress faster than others?

Anonymousjpl123

Looking at the charts, I recognize all of my LO’s symptoms and her progression through the stages of Alzheimer’s/dementia. However, I feel like her progression has been much faster than what I imagined. I know she was probably farther along than I thought when I got involved 2.5 years ago but it’s been a pretty rapid slide.

Does anyone know what factors in? I know a major factor was the loss of her spouse of 60 years.

But why do some people seem to fade more slowly while others progress so rapidly?

terei

If there is an accurate answer to this question, I have not seen it.

SusanB-dil

Agreeing with @terei ... doesn't seem to be rhyme nor reason for that.

Could be genetics, how the PWD took care of themselves prior, or other factors.

The only study I've seen close to your question is about factors that may contribute to developing 'it', but nothing on individual progression.

I think different types of dementia have different progression rates. Early-onset is supposed to progress more quickly, but a co-worker's 80's MIL blew that out the window going from stage 5 to nearly stage 8, now, in about a year and a half, shocking all of us! Nope - no rhyme nor reason

Quilting brings calm

I have read that early onset patients progress quicker and die quicker. I have read the people diagnosed in their 80s die quicker. Well, people in their 80s have fewer years to live in general than someone in their 70s, so that it’s not surprising they die quicker when they have dementia.

Other than that, I’ve not seen any explanations for why dementia patients progress differently from each other.

harshedbuzz

This is a great question.

I think a part of this is related to Dementia being an umbrella term. It's known that certain forms of dementia do tend to progress at different rates-- on average, vascular dementia progresses faster than Alzheimer's. On average, EO/YO Alzheimer's progresses more rapidly than the disease in those over 70. The majority of the time, PWD actually have mixed dementia, so there are two progressively degenerative conditions in play. There's also the notion that without autopsy I'm not how accurate this kind of diagnosis is.

I think another factor is where in the disease progression a PWD is diagnosed. Cognitive reserve may cloud onset of symptoms for some. My own dad could do freakishly well on quick screening tests like MMSE and MoCA. He could do serial subtraction faster than my mom at a time when he wasn't sure what state he was living in and was starting to develop incontinence.

And, of course, the PWD would need to be in a situation where a friend, family member or physician recognized symptoms triggering an evaluation. Not everybody has someone who would recognize early symptoms for what they are nearby. And sometimes, when you see a PWD daily and are providing scaffolding, it's harder to notice the subtle loss of memory and cognitive skills.

My one aunt likely had mild dementia when her DH died in 2003. In retrospect, I can now remember him directly scaffolding her when we saw them and talking about lifestyle changes they'd made which I know recognize as "best practices". But she didn't get diagnosed until her sister visited her sitting alone in her cold, dark house wondering why the cable was out in 2008. She was initially diagnosed with VD and progressed slowly dying in 2018.

Her sister also developed VD. She lived with her daughter as caregiver. While my cousin knew something wasn't right with her mom, she had trouble articulating what she saw in ASL because it can be hard to find interpreters in a PCP's office who are up to that kind of conversation and her written English is somewhat irregular in vocabulary and syntax. Her mom was finally diagnosed about stage 5 but showtimed her doctor into a mild dementia diagnosis. She went into an AL, crash and burned breaking a hip in the process which spiraled into stage 7. She was diagnosed in 2016 and died the next year.

With my dad, I saw personality changes as early as 2005 and frank memory loss by 2008. Mom, on the other hand, bought dad's line about this being a normal part of the aging process. He was officially diagnosed in mid-stages mixed dementia in 2016 and died in 2018. While I would describe dad's disease course as a good 15 years, mom initially described it as "fast-moving". That said, the later stages did seem shorter than averages.

I don't know where these numbers come from, but I found this page interesting.

Alzheimer’s / Dementia Life Expectancy Calculator (dementiacarecentral.com)

There's a link to a calculator for an individual calculator. It was way off for my dad. But I think his speech skills skewed this.

HB

Anonymousjpl123

It’s interesting @SusanB-dil because I agree - some people defy expectations. It does help to know that others experience the same as I am.

@harshedbuzz like your dad, where my mom is a lot of people have deep cognitive reserves, and I don’t know them as well, so I may just not be seeing their progression.

Also you are right about the diagnosis. My mom has been diagnosed now with Alzheimer’s, but I was absolutely convinced it was something else because of the rapidness of the changes. They see no signs of VD.

AlSo, it SO helpful to hear your family’s experiences because I feel like I have so little knowledge of this. We were not close with extended family, although I do know my grandfather on my dad’s side had Alzheimer’s. None others as far as I know. Definitely not my mom’s parents. Speaking of…wow your cousin had a tough row to hoe. I work with Deaf/hh and it is definitely not easy to find good ASL interpreters. I know of some residences for Deaf/hh seniors but they are few and far between.

I guess it’s a combo of factors. That was a really interesting quiz. It gave me good perspective on what the risk factors are - in my case, it was oddly reassuring because I realize while she has some risk factors she doesn’t have others.

All such good info. Thanks everyone as always.

cibione123

My MIL had an MRI in January that revealed chronic extensive white matter disease of the periventricular area of the brain. The doctor said she could no longer operate a vehicle.

She has rapidly increased in the amount of delusions she is experiencing weekly. We she the neurologist Monday. She has lived with us 20 plus years but our perceived opinion is she is declining rapidly. She is 86 and is on 3 blood pressure meds that barely keep the level in check, as well as cholesterol and diabetes meds.

I have asked our adult children to please come visit by late Spring as I feel at the rate she is declining, she may be vastly different by Summer, if she lasts that long.

Anonymousjpl123

Hi @cibione123 so sorry to hear this, but glad you found this forum. It’s a wealth of information from people who really know what they are talking about.

Im glad you’re going to the neurologist Monday. That will hopefully give some answers, although I caution (as many, many people cautioned me) to not expect too much as there are just so many unknowns with this disease.

Also, anything change that may have precipitated the decline? With my mom, it’s was the passing of my dad. It sounds like the living situation had been stable, so it could be something else that triggered it for your MIL.

I do think it’s a good idea for people to visit. It’s good that she has you.

irene912

https://alzconnected.org/discussion/68467/why-do-some-people-progress-faster-than-others

Not sure there's an answer. Maybe being alone, not stimulating the brain, poor nutrition. that's just what I've read, but everyone is different. We don't know how their brain works. My mom has progressed fast too. Very sad. Thought we could care for her longer but are headed to assisted living/mem care. Sorry you're going thru it.

cibione123

https://alzconnected.org/discussion/comment/201551#Comment_201551

I am not sure that I can find a certain event or incident that correlated with this mental slide. For the past year and a half, despite faithful taking of her meds. Including the Ozempic, she started putting on weight. I believe that perhaps was a significant indicator that maybe circadian timing and mental state were sliding and perhaps she started forgetting she had eaten before. She has put on 20 lbs in the past year and half.

I watched her eat (three) suppers on one evening.

Her mother had Alzheimer’s, her sister had brain atrophy and dementia, grandfather and uncle with the disease. She had a few fender- benders, some judgement issues over the past few years, but the significant slide started the second week of December when she visited with family for Christmas holidays. This is something she does every major holiday.

After the MRI, her geriatric doctor told us to take the keys. She was bowling on a senior league twice a week through early February. Last week we took her to bowl two games and she had to be promoted to bowl and seemed to forget the rules of the game. We have control of all the legal, financial and medical issues(POA).

Her delusions occur 2-3 times a week. She idealizes that she is in trouble with the law but all the rest of us are going to or are in jail. The rest of the week/time she is fairly clear- minded.

It is so bizarre.

Anonymousjpl123

@cibione123 i know it feels bizarre, but trust me these are all symptoms others have described.

In fact, my mom’s toggling between somewhat clear-minded and utterly paranoid/deluded led me to more doctors than I wish to admit. It’s heartbreaking and terrible and confusing. But also, I think, not utterly uncommon.

I am glad you have POA, and that you took her keys. My mom had a lot of issues with eating too, though in her case she lost weight and wasn’t eating (she never did any of the finances and thought she was impoverished after my dad died, and could only afford fruit for dinner).

It could be any number of things, or it could just be dementia/alzheimer’s. But it is good she had the MRI and I hope the neurologist can shed some light. But again; doctors don’t always have the answers we wish with this disease. Trust your instincts: you know your MIL best. Let us know how it goes tomorrow.

vtech1951

My MIL has been in late stages for almost 2 years,bedridden, cannot carry a convo, screams all day, but the disease seems to also have been paused for 2 years so expecting at least 2 more years of this (lucky us)

Anonymousjpl123

@vtech1951 this disease - whether it is the quick downward spiral my mother is experiencing in stage 5 or the slow, agonizing pause your mother faces in stage 7 - is just freaking agonizing. It just is. I try to find upsides but even for someone with my pathologically optimistic attitude, this has brought a challenge.

I hope you find some relief, respite, and peace in these final stages. Nothing about this disease is easy. I’m glad we’re not alone in it.

Anonymousjpl123

Also in my research found this: “dementia tends to progress more quickly if the person is living with other conditions, such as heart disease, diabetes or high blood pressure, particularly if these are not well-managed.” From Alzheimer’s society in UK.

Anonymousjpl123

How long each stage will last is influenced by a complex interplay of factors, Dr. Porter says. For example, people who carry certain gene variants, like Apolipoprotein E4 (APOE4), often experience faster progression through the stages. Age and other medical conditions are also critical factors, she adds; older adults who have cardiovascular disease or diabetes will progress faster than those who are younger and don’t have other health concerns.

cibione123

https://alzconnected.org/discussion/comment/201601#Comment_201601

The neurologist stated she has vascular dementia and it is in the moderate stage. Her mental memory test is significantly worse than it was 7 weeks ago. They are going to try memaintine (sp) , but she actually may be past the point of it actually working.

The delusions are every day now. When she is lucid, she is aware that her mind isn’t functioning properly. Her slide has been very fast.

She is scheduled for an EEG on the 22nd along with bloodwork. She is on 3 blood pressure medicines, has high cholesterol, and diabetes. The risk for stoke is high and likely will lead to her passing.

The main thing at this point to prevent falls as walking can be affected, and I have noticed more shuffling in her walk. So she will also see a physical therapist to evaluate if she needs a walker.

I appreciate the insight from all of you.

Marta

Cibione -I think you can trust your instincts in thinking that she needs a walker. However, don’t get your hopes up that she can learn to use it. Once disease has progressed, most PWD cannot learn, or remember to use, a walker.