Rapid Decline(7)

Shannon4969 · September 2022

Hello! My mother was just diagnosed on Sept 8, and I’m slightly confused about a few things the doctor said during the appointment.

My mother had her first evaluation in April with our family doctor, who suspected Alzheimer’s, but she was only testing as having mild cognitive impairment, I think her score was 24. Fast forward to September, and she’s scoring a 21, but the doctor said she’s in ‘moderate to severe’ stages of Alzheimer’s. She’s refusing to socialize with anyone except my dad and myself, her short term memory is shot, and she’s verbally abusive. But she’s still able to take care of herself. The doctor said she has classic Alzheimer’s presentation, but that she’s never seen it progress this quickly.

Has anyone seen such a rapid decline in less than 5 months? All the information I can find online about rapidly progressing dementia points at other causes, other than Alzheimer’s. Should I be insisting on more tests, or am I just fixating on what the doctor said and taking it out of context?

My main concern right now is that due to our strapped health care system she may slip through the cracks - I’ve heard about so many people being misdiagnosed…

Any help would be greatly appreciated.

M1 · September 2022

Welcome Shannon. It's not unheard of for dementia to progress quite rapidly, unfortunately, and there are really no effective treatments. But you do want to be sure other things have been ruled out, such as thyroid problems, vitamin deficiencies, a few other things. Brain imaging is usually recommended as part of that ruleout, and sometimes a spinal tap (but not always). If she's had those things, dementia is what you're left with. Are legal affairs in order? And you need to think ahead about family finances and eventual need for institutional care. I know it's a lot to take in, you've come to a good place for help and support.

Shannon4969 · September 2022

She’s had two scans done, blood work, etc - but no spinal tap. I’m going to ask that they do one - I have two friends with family members who were misdiagnosed, one was ALS, but the other one was having an adverse reaction to a medication combination. So I need to make sure that I do everything possible to ensure that this is in fact what she has.

My parents both have POAs, and we can afford to have either in-home care, or a care facility. Unfortunately, there is a 2 year waiting list for either of those options, and the doctor said she probably doesn’t have two years left. So I’m probably going to have to move back in with them to help. I’m guessing that even though she can take care of herself right now that I’ll have to move sooner rather than later - she’s been fixating on the idea of ending her life since her appointment, so she’s going to need more supervision. Even though I wouldn’t blame her at all if she did go through with it.

Iris L. · September 2022

Shannon, there is a big gap between moderate and severe Alzheimer's. Also, it would be unusual to go from "she can take care of herself" to having only two years left. Primary care doctors often are vague regarding what families need to know.

Have you read about the stages? See where your mom falls. Also, how old is she?

Iris

SunnyAB · September 2022

What type of scans has she had? CT, PET, MRI? Something should have been seen on those scans if she's truly "moderate-severe, with 2 years left".

Also, what is her age? Early onset and late onset tend to progress at different rates. And is it only her family doc that is doing all the diagnosing? The 21 and 24 scores you mention are just from a screening test. This is not the be all end all of diagnosis by any means, and it's also not always an accurate representation of a person's cognition in real life.

You, or someone that lives with her, is the best judge of what stage she is in, assuming this is dementia. Read online about the 7 stages and see whereabout she might fall. Look at several of them as they all describe the stages differently and some may resonate more than others.

Are you in the US? If so, a 2 year waiting list for in-home care doesn't sound right. Does your Mom even need in-home care right now? The fact that she heard, understood, remembered, and has been contemplating her "diagnosis" and what to do about it is not typical of a person with dementia, especially not someone who is moderate-severe with 2 years left. I think you are right to be skeptical at this point. She may very well have dementia, but the staging and life expectancy may not be accurate. And, as I said, there better be something on those scans.

Make sure someone else is managing her medication. That skill goes early and you want to be able to rule out medication errors as a contributing factor.

harshedbuzz · September 2022

Shannon-

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

Cobbling onto what SunnyAB mentioned, it sounds like you are not in the U.S. You left your profile blank, so it's not clear to which health care system you are referring.

I want to expand on a couple of points you made that sound familiar to many of us.

1. It is very common of a long-term family physician to avoid the A-word for a number of reasons. Firstly, they are usually screening for further evaluation and won't have access to the testing and specialized training the neurologist will have. Secondly, a lot of family docs will hesitate to give a patient and family with whom they've had a long relationship such a devastating diagnosis.

2. It sounds like your mom was given a quick screening test like MMSE or MoCA which both have a 30 point scale. Were you there when it was done? Aside from the possibility that the family doc could have used a different instrument than the neurologist making 24 to 21 apples to oranges, there is wiggle room in administration where a prompt is given to assist recall.

My dad tended to do better on the MMSE than the MoCA early on because his executive function skills seemed to tank well before his memory deficits were obvious to others.

3. Sometimes a person with significant "cognitive reserve" will perform better in testing than one would expect. These are usually bright people. My dad was one. I recall taking him to see his geriatric psychiatrist for a routine appointment. The doc gave him a MoCA and he scored in the higher end of the MCI range. By this point, dad was shuffling, he couldn't recall what he'd eaten for lunch or whether my sister was dead or alive, partially incontinent, routinely hallucinating and would be dead within 6-9 months.

The doctor praised dad's performance and kind of side-eyed my mother and I who were there to tweak his psychoactive meds because his verbal aggression was ramping up. As we left, dad bragged the entire way down on the elevator about being "off the charts intelligent". While I turned in my ticket for the valet, dad got away from me and got into some random woman's car with her in it. TL;DR how well a person tests doesn't always give a clear picture of how they're functioning IRL.

4. Is the abusive behavior new? Sometimes a silent UTI can trigger dramatic changes in behavior. Can you access a geriatric psychiatrist? There are medications that could relieve her of the anxiety that sometimes drives abusive behavior. A geripsych could also look at what medications she takes to R/O this behavior as a side effect or reaction to meds that shouldn't be combined.

5. My dad's dementia was diagnosed fairly late. I was unable to convince my mom to have him screened and evaluated until there was a crisis which forced her hand. He had mixed dementia and was given a preliminary diagnosis in August of 2016, was officially diagnosed in December of 2016 and died from complications of Alzheimer's in April 2018. I had 2 aunts with dementia at the same time, the younger one lived about 15 years from the time on symptoms and the other passed with 3 years of her diagnosis. Every PWD seems to be different.

HB

Shannon4969 · September 2022

Thank you all so much for replying.

Yes, I’m Canadian - we live in southern Ontario.

She’s had two CT scans - the doctor doesn’t think a PET scan is necessary.

Her appointment on Thursday was with a geriatric psychiatrist. She’s the one who told us ‘moderate to severe’ and said she has 1-2 years left. Granted, my mother was being EXTREMELY difficult. She’s highly educated, and she’s taking all the screenings as the drs questioning her intelligence - she’s taken to calling herself an imbecile. So she wasn’t even answering most of the questions truthfully.

My dad and I think it’s mostly her short term memory right now that’s the issue. She can’t tell you what she ate for lunch that day, but she can tell you what I made her for dinner a week ago.

The aggression and verbal abuse started in June, when we were told it would be a 3 month wait to see a specialist. She’s mad at the world, and because she’s isolating herself so much she takes it out on my dad and I.

There have been a few ‘accidents’ with her wetting the bed - but only after she’s barely slept for a few days and then sleeps for 12-16 hours straight.

My dad organizes all of her medications, and she’s being put on an anti-psychotic once she’s been off an anti-depressant for two weeks - they’re worried it will cause side effects taken together.

She’s 68, doesn’t drink, smoke, or do drugs. Otherwise healthy. No family history. Has a history of major depressive episodes.

harshedbuzz · September 2022

Shannon4969 wrote:

She’s had two CT scans - the doctor doesn’t think a PET scan is necessary.

It's pretty unusual to get a PET scan. My dad had one trying to distinguish between Wernicke-Korsakoff's and Alzheimer's-- in WKS the brain uses glucose in a characteristic manner. The PET scan confirmed mixed dementia.

Her appointment on Thursday was with a geriatric psychiatrist.

That's great. These can be hard to access in some communities.

She’s the one who told us ‘moderate to severe’ and said she has 1-2 years left. Granted, my mother was being EXTREMELY difficult. She’s highly educated, and she’s taking all the screenings as the drs questioning her intelligence - she’s taken to calling herself an imbecile. So she wasn’t even answering most of the questions truthfully.

My dad was very offended by his neurologist who was very frank with him about drinking and how it impacts progression. The same with his PCP.

Your description of your mom sounds all over the place in terms of skills. My dad was like that too. That said, it is a common tactic for PWD who are in the middle stages and aware of their issues to some degree to fake it when they don't know something. This is usually done with joking, but dad would often respond with nonsense or even sarcasm early on to deflect around answers he didn't know.

My dad and I think it’s mostly her short term memory right now that’s the issue. She can’t tell you what she ate for lunch that day, but she can tell you what I made her for dinner a week ago.

The aggression and verbal abuse started in June, when we were told it would be a 3 month wait to see a specialist. She’s mad at the world, and because she’s isolating herself so much she takes it out on my dad and I.

IME, lack of executive function is a bigger risk to day-to-day function than memory. The ability to make sound decisions or understand cause and effect is lost pretty early on. Dad's verbal abuse really ramped up during the time we were initiating the evaluations.

There have been a few ‘accidents’ with her wetting the bed - but only after she’s barely slept for a few days and then sleeps for 12-16 hours straight.

In terms of staging, occasional urinary incontinence is a late-stage symptom on dementia scales. Not all people will go through the progression in exactly the same order, but accidents are indicative of a brain that is no longer processing the signal from the bladder that it is full as a healthy brain would.

dementia---fast-scale.pdf (hartfordhealthcare.org)

My dad organizes all of her medications, and she’s being put on an anti-psychotic once she’s been off an anti-depressant for two weeks - they’re worried it will cause side effects taken together.

Who made the decision to stop the antidepressant and was it done with a taper if necessary? That could have a big impact on how she's feeling. I do hope the antipsychotic is helpful for her. Seroquel was a game-changer for my dad.

She’s 68, doesn’t drink, smoke, or do drugs. Otherwise healthy. No family history. Has a history of major depressive episodes.

Again. I am sorry you are dealing with this.

Quilting brings calm · September 2022

Here is a narrative of the different stages of Alzheimer’s, which can be a slow progressive form of dementia. Beginning with stage 4, the average duration of each stage is two years. So many people live 8-10 years after diagnosis, depending on age, physical condition and what stage they are in when diagnosed. The other forms of dementia move faster. As others have said, the testing numbers may or may not be indicative of the actual stage a person with dementia is in. Truthfully if your mom can take care of herself, I can’t imagine she’s later than early to mid stage 5. Read the descriptions and tell us what you think

https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

Battlebuddy · September 2022

A lot of good advice already. I agree with Quilter who says she is somewhere in stage 5 . Remember too that sometimes they bounce back and forth in the stages. But she doesn’t really seem like showing much of 6. Six is a whole lot of issues with toileting and bathing. For instance ,not really knowing what the toilet and paper are used for.

Shannon4969 · September 2022

Early stage 5 seems accurate to me. She’s seems very aware of what’s happening, but it’s hard to tell exactly because she’s fixating on the appointment and wants to repeatedly discuss what the doctor said, what her life expectancy is, and when we’re ‘abandoning her in a home’.

The med they’re taking her off of is Wellbutrin - she’s on Cipralex as well, so they aren’t tapering her. The doctor didn’t give us much of an explanation - it was all very doom and gloom, so I don’t know exactly how much I missed of what she said. I have a friend that was a nurse for a geriatric psychiatrist before the pandemic, and when I went over everything with her back in April she was very positive and said that my mom would probably be prescribed Aricept and that it would really slow down the progression. So it was quite crushing when the dr said it’s too late for that,

I asked what she saw on the scans - she’s actually had 3, one 2.5 years ago, one in May, one in August - and her reply was ‘general brain atrophy’ but wouldn’t go into more detail. I’m not a big fan of doctors. My dad was misdiagnosed with stomach pain - for 6 months - and almost had a heart attack. I was told my appendicitis was an ovarian cyst - appendix very nearly ruptured, and had a malignant tumour in it - if the rupture hadn’t killed me, cancer cells being spread through my entire abdomen definitely would have. So my trust in doctors isn’t great.

harshedbuzz · September 2022

Shannon-

Those stories of your experience with doctors are shocking. I am so sorry your family had to go through that.

Brain atrophy is what Alzheimer's looks like on scans. Cells are lost and the brain is smaller in size beyond what would be expected for her age. Having multiple scans over a period of time would give a reliable baseline for comparison of the rate and areas of loss.

A friend's mom was recently diagnosed with dementia posthumously; she'd fallen and broken a hip at 90 at which time she had a CT scan of her head in the ER; it showed a small amount of atrophy consistent with being 90. She healed well and returned to driving and her busy social life when COVID shut things down. She was physically great, but my friend noted some uncharacteristic personality changes in terms of politics and such. One thing that made my friend (a PhD biochemist) crazy was that her mom refused to take the vaccine. Her mom had been a huge proponent of vaccines-- even working with a UN vaccine program in India for 2 years after she retired. Her mom caught COVID and was found on the floor of her IL cottage which resulted in a transfer to the ER and another CT scan which showed significantly more atrophy and shrinkage than 3 years prior which explained the odd behavior about which her daughter was concerned.

The Cipralex (our Lexapro) should help calm her. Wellbutin is sometimes given to "activate" a person with depression. Dad was prescribed it for that. It didn't help that but did ease his craving for alcohol, so we stayed with it.

I can appreciate the message of gloom and doom being hard to hear as a LO of a PWD. The reality is that this is a fatal illness and there is no treatment to reverse or even slow the progression of the disease process. Your friend misspoke when she said Aricept would "slow down progression". It can improve function and even mood in some people (which is helpful, for sure) who take it, but it does nothing to slow the disease process. If you believe she's still in the midstages (and it does sound like that's the case), perhaps your GP would prescribe it for her to trial and then you'd at least know if it would help her.

HB

M1 · September 2022

Shannon, from what you're describing it sounds like you have your diagnosis, I would not put her through a spinal tap (very invasive and potentially painful procedure that takes a LOT of cooperation from the patient).

Hard to accept, for sure, but sounds like your family's energy is better spent on planning for the future. Predictions about life spans are often inaccurate, so I wouldn't focus on that; I would focus on your financial and legal planning and hope that the antipsychotic is going to calm her and dampen the aggression and anger. Again, I'm sorry, it's a lot to grieve. Sounds like you really miss your mom as you once knew her.

Shannon4969 · September 2022

Again, I appreciate everyone’s responses.

The Aricept. The geriatric psychiatrist also said it can slow down the progression - but only for a year, maybe a year and a half max. But that it doesn’t improve function, so there’s no reason to give it to her.

This is my frustration - I understand that they don’t want to give us false hope, but this just makes me feel like the doctor is being dismissive. That it’s easier to just prescribe an anti-psychotic - which according to the nurse I spoke to this morning, will make her borderline catatonic - rather than trying something less extreme and seeing if there’s improvement. Neither my father or I are willing to heavily sedate a woman that is capable of taking care of herself, just so she doesn’t have an hour in the morning where she’s mad at us and says mean things. I have picked up the script to have on hand in case something extreme happens, just to be safe.

Shannon4969 · September 2022

So, we tried her on the Risperidone, and I can not get over the difference. She’s relaxed, happy, she went out for dinner with her brother last night - after refusing to see anyone for 3+ months. She has no recall of most of the last couple months, but she could tell you what every single person ordered for dinner last night.

Has anyone else seen this? Anti-psychotics vastly improving short term memory?