Stages of Alzheimer's

@Rcox63

Hi and welcome. I am sorry for your reason to be here, but happy you found this place.

A couple of thoughts—

You aren't being unreasonable in wanting to pin down an answer as where your mom is currently (though I promise you that you know better as her fulltime caregiver than any doctor could surmise from a routine visit), but that won't necessarily be predictive of a timeline for the progression of the disease to its terminal outcome or death from some other event. This is a difficult reality for all of us who are planners by nature.

When medical people do "stage" patients with dementia, they generally use a 3-stage model based on available treatments like infusion and oral medications. When caregivers talk about stages, they are using a 7-stage model that reflects direct care and safety needs around IADLs (skills like driving and money management learned as a teen/young adult) and later ADLs (self-care skills like toileting, feeding and dressing learned a very young child).

DBAT is my favorite overview of the disease arc in terms of symptoms and behaviors until the very end stages of the disease when FAST is more specific. I especially like the age equivalencies for gut-checking issues related to autonomy and safety.

Two things to consider when using DBAT are that the signs are common and not universal— each PWD will have their own unique path and that a PWD is considered to be in the latest stage for which they have a symptom or behavior listed. Many PWD do seem to straddle 2 or more stages simultaneously.

The rate of decline can vary a great deal. People with early onset tend to progress more rapidly than older people like you mom. Many people diagnosed with ALZ have mixed dementia that includes VD; these people also can progress at a faster rate. Since your mom has no other significant health issues of which you are aware, she could progress at a slower rate than some.

Alzheimer's is not called the "long-goodbye" for nothing. Dad's neurologist told us that people can live with Alzheimer's for 10, 15 and even 20 years in extreme cases. Dad clearly had symptoms for 10 years before his eventual diagnosis and lived 18 months after with mixed dementia. I have an aunt who lived at least 15 past her first symptoms residing in a MCF for almost 10 years which is unusual.

Your mom could need 24/7 care for years. If you continue to provide this, in her home, you could be squandering precious time with children still home and a self and spouse still healthy enough to enjoy the things you are currently deferring. It's a terrible decision all around.

Do you and your sister hold POA? Do you have a plan for placement at some point in time or stage of the disease? FWIW, for many caregivers, incontinence and/or sleep disruption break the camel's back. If placement will be in the future, you will want to be watching both her progression and assets. If she doesn't have LTC insurance, sufficient hours of in-home aides might become more than the cost of placement especially if she can no longer participate in transfers and becomes a 2-person lift.

The other piece to placement is that most have a threshold of ambulation and self-feeding for admission. If she were to break a bone or have a stroke, the MC option would be off-the-table and you'd be looking for a SNF at a much higher cost and with fewer enrichment activities available. If she could potentially need residential Medicaid to fund her care, be aware that many MCFs that do take Medicaid require 2 years of self-pay before converting to a Medicaid bed.

HB

I think the 2 pieces of advice and info above are probably the best explanation and insight I’ve seen here regarding eh type of situation you’ve posted about. Couldn’t have given better info or advice myself. I and also a plan-ahead-er and want to know where in the stage my own mom is, and the Dbat really does help to pinpoint it a bit better as far as the Alzheimer’s itself. My mom also has heart, kidney and physical issues to add to it, so knowing at least in part what might be associated with the disease of dementia vs. the physical ailments that may even exasperate it all had been helpful as well. I’ve been studying Alzheimer’s related behavior and symptoms and all the things since my mom’s diagnosis in spring of 2024 (although my family and I had noticed things began at least a year before that). I recommend the 36 Hour Day book (many have recommended that on this forum) and all of the other advice regarding POA, DPOA, being on the bank info (payable upon death is important as well because I experienced that with my dad who had it that way with me on one account but not any other and the other took months to get worked out plus an affidavit of heirship to file which costs money). But I also recommend getting online and watching some informational videos as well as caregiver videos of those that take care of parents in various stages. It’s been so informative to have so many aspects of info from caregivers and experts and has helped immensely.

Best of everything going forward, of course.