Rate and manner of progression?

secondcor521

Hi all.

My Dad just turned 87 and was diagnosed with Alz/VD about two months ago and has several other various health issues.  He is in a good CCRC and moved from IL to AL about six weeks ago.

I'm new here so I don't know if the 7 stages at alzinfo.org is a common framework, but it seems helpful to me.  I think my Dad is definitely in stage 5 now and may be in stage 6a/6b.

It seems clear thus far that there is a general decline we can see looking back over the past two or three years.  It also seems clear that if his physical issues are managed well, his mental status is clearer.  He also seems to have better days and worse days.  Today was not a good day.

I know each person is different and it can be hard to predict, but I am wondering if there are any general patterns with respect to the rate and manner of disease progression from a big picture perspective.  Is it overall a slow and steady sort of linear decline?  Are there "lurches" downward with periods of relative stasis?  Do the progression seem to speed up or slow down in certain stages or for typical reasons?

Thanks for any thoughts.

M1

Welcome to the forum, you won't get much response today because the website is being updated in just a few hours. You may want to repost on the new site Wednesday. 

My personal opinion is that the progression is not linear and is too variable to really be able to make predictions. There can definitely be lurches, and age and other health issues all play into it. Im glad your dad is well cared for.

harshedbuzz

secondcor521 wrote:

Hi and welcome. 

I'm new here so I don't know if the 7 stages at alzinfo.org is a common framework, but it seems helpful to me.  I think my Dad is definitely in stage 5 now and may be in stage 6a/6b.

We tend to use some form of the 7-stage model here; many neurologists use a broad 3-stage model. 

It seems clear thus far that there is a general decline we can see looking back over the past two or three years.  It also seems clear that if his physical issues are managed well, his mental status is clearer.  He also seems to have better days and worse days.  Today was not a good day.

My mom does not have dementia; her PCP and psychiatrist assure me of that. But she is medically complex and when her breathing, heart or BP are functioning properly she acts like someone with dementia-- forgetful, vague, confabulating and even a bit paranoid. It scares the bejeebers out of me. Once we get the COPD under control, the valve replaced and/or the BP just right, she bounces back. She's also has had some hospital-induced psychosis as she's gotten older and bounces back from that. I could see where a downturn in general health would manifest in bad days relative to the current normal for your dad. 

I know each person is different and it can be hard to predict, but I am wondering if there are any general patterns with respect to the rate and manner of disease progression from a big picture perspective. 

You kind of answered your own question. (bolded) There are some recognized trends, but they aren't universally applicable. The Global Deterioration Scale offers averages which can give some idea of a typical time line.

Seven Stages of Dementia | Symptoms, Progression & Durations (dementiacarecentral.com)

Is it overall a slow and steady sort of linear decline? Are there "lurches" downward with periods of relative stasis? 

For your dad this is complicated by having the common mixed-dementia diagnosis. In general, Alzheimer's progression is a steady linear decline while vascular tends to progress as a series of plateaus with sharper declines. In general, it is thought that the life expectancy of a person with VD is a couple of years less than someone with Alzheimer's alone. Ironically, some younger, and presumably healthier people with early onset have a faster disease progression than those who are diagnosed > age 70. 

  Do the progression seem to speed up or slow down in certain stages or for typical reasons?

I've not seen anything slow the progression down. There are those who suggest the best practices of a Mediterranean diet, exercise and maintaining a regular stress-free routine helps, but I have never seen actual data to support that. Many say not maintaining a familiar routine is detrimental. I moved my dad a lot during the time he was diagnosed-- from his house in FL in July, to his house in MD, to the hospital in PA, then rehab, then an apartment in PA and then a new house in January. He didn't seem to have any obvious loss of skills around any of the moves.

That said, there are things that seem to increase the rate of progression for some. Hospitalizations can be bad, and some don't rebound to their previous level. Anesthesia is especially hard on a diseased brain. Traumatic injury is a common cause of an increase in the rate of progression.

Anecdotes. My aunt had the classic hip fracture and went from stage 4 AL to stage 7 overnight; she died within a few months of her injury. When dad was living with dementia, I also had 2 aunts with it as well. The aunt who had the hip fracture was the last of the 3 diagnosed, but the first to pass less than a year after her diagnosis. Her younger sister had been formally diagnosed in 2007 and lived 11 years in a CCRC. 

Thanks for any thoughts.

HB

secondcor521

Thanks to whomever copied over my post and to M1 for the reminder about the website transition.

Thanks to HB for the detailed, clear, and on-point reply; that was exactly what I needed. Based on the GDS, I think my Dad is leaving 4, entering 5, with some aspects of 6 and none of 7. I would guess that there are no bright lines and some overlaps of symptoms between stages at any given time is common.

After posting, I realized that I wish I could know whether Sunday's bad day was just that - a singular bad day, maybe brought on by a bad night's sleep or something - or if it represents a sudden and more permanent lurch downward. He did go through a hospitalization and rehab and move from independent living to assisted living over the past two months, and seemed to be doing better the last few weeks until Sunday where it was a pretty noticeable and significant decline from the previous week.

A friend advised me that my preference for my Dad's health to be predictable will almost certainly not work out and I need to let go of that preference. I think she is probably right on both points.

Thanks again; additional comments welcome.

Arrowhead

Alzheimer’s progression is literally a rollercoaster. You start at the top but eventually arrive at the bottom. Along the way there will up ups and downs, easy lefts and hard rights, and some loops. Speeds and directions vary. The only difference is that you are blindfolded so you don’t know what’s going to happen until it happens. 

wyoming daughter

Arrowhead your description is spot on. It seems about the time you have made it through the hard right turn, here comes the loop! And 100% with the blindfold. What a ride, none of us get on it voluntarily.

CanyonGal

My mom has vascular dementia. About every 6mo to a year she would move to the next stage, but she would have a hospitalization during that time (surgery, an illness (urosepsis), and twice AKI with a hypertension crisis hospitalization). She had Covid without symptoms. Her hospice nurse said surgery, any kind of hospitalization, UTI, or illness will cause the dementia to progress.

Nutrition can influence whether it's a cognitive decline due to a nutritional deficiency or the dementia just increasing to the next stage. Check medication for side effects.

Looking back, we first saw signs in the fall of 2018. She was really good about hiding her problems and didn't want to admit she couldn't handle her affairs. She was functional with mild cognitive impairment for awhile but had a fall and then memory issues were very apparent. We are at 6e on the FAST scale.