Accurate diagnosis: Have I overturned every stone?

Stellar Daughter-In-Law

Hello,

Before my 76 year old, otherwise healthy mom gets slapped with an Alzheimer's or dementia diagnosis, I want to be sure we have ruled out every single other possibility.  Here are her symptoms and what we are doing to investigate.  Please tell me if you think there is anything else at all that we should be looking into or considering.  I want to leave no stone unturned.  What else can I do or look for?

Thanks!

SYMPTOMS

My 76-year old mom, always an energetic go-getter, extremely organized, amazing cook, who has never experienced depression, and runs circles around the rest of us is now experiencing new behaviors over the course of the last year:

- Changes in personality, less out going, withdrawn, less social, less engaged in conversation.

- Apathetic, sleeps lots, doesn't want to get up, deep long naps.

- Very hard time remembering words, names, forgot how to bake a pie, messing up recipes, forgot her phone number, forgets to send birthday cards (she has a whole system for this she has been using for decades), double booking appointments, in conversation doesn't answer a question asked of her but speaks to some other aspect of the topic.

WHAT WE ARE LOOKING AT

My mom notified us of her memory issues, asked for us to let her know if we notice anything.  She is very thankful for our help and very cooperative for the most part.  (Yes, I know just how lucky I am!)

NIH - National Institute  of Aging Alzheimer's Evaluation Center in Pittsburgh

This week completed first part of 5 hour evaluation, will get results on Nov 16. Evaluation included - neurologic testing, 1.5 hours of cognitive testing, physical exam, evaluated by psychiatrist, social worker neurologist, getting MRI to rule out tumor, TIAs, AND blood tests to check Vitamin B-12 and thyroid function.

Medications

Over the last two months I have convinced here to go off or replace four meds that are anticholinergics or have an anticholinergic effects.  (Including Paxil which she started 20 years ago for situational anxiety when I was diagnosed with cancer and she never went off of it.) She is still on a statin for cholesterol, which she started taking a year or so ago. I was extremely disappointed that the folks doing the evaluation didn't care at all about her meds - anticholinergics were of no concern to them, and their rule of thumb is the more statins the better.  

I have made an appointment next week for her to see a geriatrician who I hope cares more about meds and will help us investigate those possibilities.  

Depression - Psychiatric Evaluation - Big life changes

My mom has what I consider to be symptoms of depression (apathy, tiredness, lack of interest, less social) but she insists she is not depressed, she is not unhappy.  Psych part of NIH evaluation was short. I want her to have another one.  She is very against it.  

Big changes in her life included: Her younger brother died Feb 2020, best friend died June 2020, grieving during covid, isolation during covid.  She has spent a decade as a caregiver for three different family members and she is no longer doing so since her brother died.  She is glad to not have to do it but what a huge life change.

I would love her to go to 6 sessions of therapy and to get a more in-depth psych eval but she seems quite opposed.  My thought is gee, wouldn't it be wonderful is she has undiagnosed depression instead of Alzheimer's.  (I know I am grasping at straws here.)

SusanB-dil

Stellar - I'm surely not qualified to say, even though It sounds like something is going on. You are already on top of what I would suggest, in that it already sounds like you are doing everything you can to get the correct diagnosis.   She has also been keeping up with regular checks with primary care, most likely?  They would have more suggestions to anything else that could be going on.

harshedbuzz

Stellar DIL-

I can appreciate the horror of dementia impacting your DM given your background with your own FIL. I don't know that a major depressive episode profound enough to mimic dementia is "wonderful" especially if Paxil was no longer enough to keep these symptoms at bay. FWIW, many- if not most- PWD develop anosognosia at some point and are unaware of their limitations unlike people who suffer with depression and are all too aware.

It seems as though you have put a comprehensive evaluation in place. Perhaps it makes sense to get the results of the evaluation and see how you feel after that. Perhaps the cognitive testing and MRI will be suggestive of a specific kind of dementia. The pattern of dad's symptoms, relative strengths and damage seen on his MRI and PET scan made it easier to wrap our minds around what was going on.

To my ear, this seems like the kind of apathy, executive function and memory loss associated with dementia. Given that you feel she's never had depression in the past it would be very, very unlikely she'd develop it in her mid-70s. Although, depression and anxiety are almost impossible to tease apart in some individuals, so it may be a part of her baseline even if you didn't see it. It's also very possible that she has depression and dementia. 

HB

DrinaJGB

Recently lost brother and best friend and isolated since covid. Anyone consider that she is grieving?

mommyandme (m&m)

Stellar,

Thanks for sharing this. I think you’re covering it all.  She’s lucky to have you!

Stellar Daughter-In-Law

HB - At what point did your dad have a PET?  Was it part of an initial diagnosis, who ordered it, and what does it show that is different from an MRI?  They only mentioned MRI as diagnostic imagine and I wonder if it is of benefit for diagnosis?

Stellar Daughter-In-Law

I have wondered if much of this is grief related and hoped that counseling could help.  She has so much experience with grief and knows her own way of doing it.  But that way of doing it means that at about four weeks after a death she wills herself to get back into life and join the living while going to synagogue every Friday night to feel her feelings and say Kaddish. 

With her brother and best friend she was unable to do any of this because of Covid.  No routine, no life to get back to, and services were only over zoom, which really didn't do it for her.  And her piece of crap Rabbi was so out of it and unhelpful, I had to call him and ask him to check in on her.  He did so once.  He knew my uncle and mother so well and it is terrible that she got no support from him. 

jfkoc

I would bet heavily on the existence of depression and grief...death, covid and aging...all contributeing.

Iris L.

Stellar Daughter-In-Law wrote:

SYMPTOMS

My 76-year old mom, always an energetic go-getter, extremely organized, amazing cook, who has never experienced depression, and runs circles around the rest of us is now experiencing new behaviors over the course of the last year:

- Changes in personality, less out going, withdrawn, less social, less engaged in conversation.

- Apathetic, sleeps lots, doesn't want to get up, deep long naps.

- Very hard time remembering words, names, forgot how to bake a pie, messing up recipes, forgot her phone number, forgets to send birthday cards (she has a whole system for this she has been using for decades), double booking appointments, in conversation doesn't answer a question asked of her but speaks to some other aspect of the topic.

I have had these same symptoms, worse in the past few months.  I blame some on Covid restriction isolation.  I do not have Alzheimer's Disease.

 

WHAT WE ARE LOOKING AT

Medications

Over the last two months I have convinced here to go off or replace four meds that are anticholinergics or have an anticholinergic effects.  (Including Paxil which she started 20 years ago for situational anxiety when I was diagnosed with cancer and she never went off of it.) She is still on a statin for cholesterol, which she started taking a year or so ago. I was extremely disappointed that the folks doing the evaluation didn't care at all about her meds - anticholinergics were of no concern to them, and their rule of thumb is the more statins the better.  

I have made an appointment next week for her to see a geriatrician who I hope cares more about meds and will help us investigate those possibilities.  

Depression - Psychiatric Evaluation - Big life changes

My mom has what I consider to be symptoms of depression (apathy, tiredness, lack of interest, less social) but she insists she is not depressed, she is not unhappy.  Psych part of NIH evaluation was short. I want her to have another one.  She is very against it.  

Statin drugs and anticholinergics can cause memory loss and cognitive changes.

Big changes in her life included: Her younger brother died Feb 2020, best friend died June 2020, grieving during covid, isolation during covid.  She has spent a decade as a caregiver for three different family members and she is no longer doing so since her brother died.  She is glad to not have to do it but what a huge life change.

I would love her to go to 6 sessions of therapy and to get a more in-depth psych eval but she seems quite opposed.  My thought is gee, wouldn't it be wonderful is she has undiagnosed depression instead of Alzheimer's.  (I know I am grasping at straws here.)

Patients can become tolerant to antidepressants.  A trial of a different one might be considered.  If there is a question of depression, I believe it should be treated aggressively before a diagnosis of dementia is made.

Grief is serious and can be subtle but overwhelming.   

I am dealing with a lot of cognitive issues.  A trial of Exelon patch and Namenda helped me, even though I don't have AD.  Best wishes to you and to your Mom.

Iris

harshedbuzz

Stellar Daughter-In-Law wrote:

HB - At what point did your dad have a PET?  Was it part of an initial diagnosis, who ordered it, and what does it show that is different from an MRI?

My dad's path to a diagnosis was not straightforward. My mother was in serious denial of his symptoms which she explained away as "part of the normal aging process", grief related to the death of my younger sister who was his favorite and me trying to make him "look bad". It took her nearly dying with him as her advocate and then trashing the house during a psychotic episode to get dad diagnosed on his second trip to an ER in a week. 

I insisted on the second ER visit to a major university teaching hospital because the local ER was useless. Based on the history mom gave, describing an acute onset of confusion, he was treated for Wernicke-Korsakoff's (a treatable and potentially reversible alcohol related dementia caused by a Thiamine deficiency) in the ER and admitted for observation. I caught up with the attending's chief resident away from my mother and filled him in on what I had observed in terms of personality and cognitive changes over the years which mother did not include in the ER; the attending gave a working Alzheimer's diagnosis and turfed dad to rehab with a follow up appointment at the hospital's Memory Center to sort out his diagnosis and plan forward. In the first couple of weeks after his IV Thiamine treatment, his memory and cognition did improve considerably though no where near his previous baseline

The doc at the Memory Center ordered the PET scan in an attempt to decide which dementia dad had. The history and symptoms were not clear cut- he had features of Alzheimer's, WKS and some FTD-behavior in the mix. The PET scan was ordered because it showed how and where the brain uses glucose which is different in WKS than in a healthy brain or in other kinds of dementia. We had already seen some shrinkage and areas that were likely past bleeds on his MRI. At the end of the testing, the neurologist gave a mixed dementia diagnosis- Alzheimer's and WKS. 

 They only mentioned MRI as diagnostic imagine and I wonder if it is of benefit for diagnosis?

An MRI is generally the standard unless there is a compelling reason to do the PET scan as well. We were fortunate that mom's insurance covered it; many can't get it covered. There was also some discussion of a lumbar puncture to look for markers for Alzheimer's but we declined. 

HB

Stellar Daughter-In-Law

HB - Sorry for the intense ordeal you have gone through and I appreciate your information.  It reminds me that if they do give an Alzheimer's diagnosis, we will find a good (hopefully) memory care center at their hospital and see what, if any follow-ups are needed.

Iris - Thanks for your responses.  It sounds like you are coping with some difficult new changes and I'm wishing you all the best.

Michael Ellenbogen

I would wait for the results since there less than a month away. But if the answer is not sure I would do a lot more and even start ALZ drugs.

JJAz

The psych tests for them are brutal.  Imagine someone giving you every test that makes you think that you're an idiot.  I wouldn't go back, would you?  Wait for the results in November and accept them.  It sounds like the professionals have ruled out other diseases.

Stellar Daughter-In-Law

It is not Neuropsychology testing that we would get more of.  She had so much of that in this initial evaluation last week. 

I'm more so interested in a longer evaluation with a psychiatrist for depression screening.  We are also meeting with a geriatric PCP this week to talk about medication management - can we try taking her off a statin that she started a year ago and see if that changes her memory at all?

jfkoc

Instead of more "evaluation and screening" maybe the new PCP will just try an anti depressent.

Stellar Daughter-In-Law

"Instead of more "evaluation and screening" maybe the new PCP will just try an anti depressent"

Amen to that idea!  I would love her to have a new PCP that would have caught these changes and knew her well enough to have thought of this long ago.  

harshedbuzz

jfkoc wrote:

Instead of more "evaluation and screening" maybe the new PCP will just try an anti depressent.

She's already on Paxil for 20 years.

"Stellar" care would be a geriatric psychiatrist who might be able to parse what is depression and what is cognitive shift. Dad's geripsych was the single MVP on dad's medical team. He saw the bigger picture and made dad feel cared for and heard. 

IMO, SSRIs are powerful medications best left to a specialist and that would be a psychiatrist not a PCP. I feel this is doubly true when the person in question is not a neurotypical young or middle-aged adult. 

A geripsych might also revisit the Paxil which is one of the older SSRIs and seems to have a greater likelihood of side effects than some of the newer meds out there. 

One of the downsides to trialing SSRIs is that it takes about 6 weeks or so to start low, titrate up and see what sort of benefit vs side effects she has. If the medication trialed isn't a good fit, then it's time to wean down and start a new option. 

If you see a geripsych you could ask about Gene Sight testing which might streamline this by giving the doctor an idea of which med might be best for her.

DNA Medical Testing | Genetic Testing | GeneSight

HB

Paris20

It sounds like you’ve done a great deal already, but there are so many variables involved that it will likely take time before you get a definitive diagnosis. When I was suspicious about my husband’s condition, our PCP gave him a cognitive test and then looked at his meds. She took him off one, Metformin, and then another (Sorry, I can’t recall which one) to see if any meds were causing the changes I had seen. We had to wait months before we could see the neurologist but he ordered an MRI, extensive blood tests, and more cognitive tests. Everything else was ruled out so we were told that we were dealing with the onset of Alzheimer’s, which had killed DH’s grandmother when she was 62.

My husband never accepted his diagnosis and still doesn’t (i.e., anasognosia). However, over the six years since diagnosis, my husband has become much worse and it is quite evident that he has a multitude of Alzheimer’s symptoms. So, my advice is to wait and see what the specialists’ conclusions are. You can ask if any medications could possibly be contributing to the symptoms. Depression and dementia are definitely not mutually exclusive conditions. She can have one or both. That’s why it’s so complicated. She certainly has reason to feel depressed. Has her hearing been checked? It’s just a thought. Meanwhile, the family needs to keep her safe. She shouldn’t drive and she really shouldn’t be left alone. Good luck!

Rescue mom

You’ve already done so much. If I read right, you've done important tests and get results Nov. 16, about 3 weeks. Those—especially the MRI—will be really important, for dementia and other things. The scans don’t always provide every answer, but sometimes they show things that are pretty much inarguable, and easier for some people to grasp.

It sounds like a long time. But most anti-depressants take 4-6 weeks to take effect.  Maybe she could have some therapy/counseling sessions in the meantime? Those rarely hurt, IME. Most people, unless they’re into dementia, can be helped by good counseling, and she may be depressed and/or grieving. At any rate, seems to me a few therapy sessions may, or may not, help, but shouldn’t hurt (other than cost).

But you’ve done really well to get those tests done. It’s just so hard to wait. And yes, as said, she could have dementia and depression both.

Just a total personal note on statins….My DH was on 2, sometimes 3, statins, and had been for several years, when he got the Dx of Alzheimer’s. We stopped all statins within a year, for a variety of reasons, with doctor supervision.  Made no difference, as far as anyone could tell. His cholesterol numbers went up (they were high all his life) and his Alzheimer’s progressed as expected. But I don’t think the statins mattered either way. Again, thats just personal experience. 

We did not do a PET scan. I pushed a little for it, mostly to exhaust everything. But all other tests and scans were so conclusive—even I could see the process/results—the doctors “strongly suggested” I use that money for other things such as caregiving help. (Our insurances did not cover it, but we could have paid out of pocket, and I was going that way).

Harshed Buzz first post (all, but that especially) was very wise….

Stellar Daughter-In-Law

UPDATE:

I traveled to my parents' on Friday and went to an appointment with my mom that I booked for her with a geriatrician.  She was pretty against switching PCPs but I told her this was just to get an opinion and see if she would benefit from being seen by a geriatrician.  During the appointment she got out of her chair, crossed the room, hugged me, and thanked me for brining her there.  

I had already gotten my mom off of three meds and the doc completely agreed with me about them.  And, he took her off of another three.  A few he deferred to specialists on.  I was glad to see that he wasn't just across the board throwing things out but had very good evidence based justifications.  

I told him I wanted to see if there was anything else at all that could be causing memory issues and he was totally on board with that.  He ordered a sleep study, which my mom booked immediately but can't get in until February.  (She has been having odd leg pains at night that have been keeping her up.)  

He said certainly grieving could play a part.  They have a social worker, therapist, and psychiatrist in their office.  My mom is just so against these things as a possibility.  I'm going to ease into it with her.  I don't see the harm in 3-5 sessions of talk therapy.  

Everyone in my family concurs she is safe behind the wheel and fine to be left alone.  If the team who did the neuropsychological evaluation feels differently we will find out on Nov. 16.

I am so thrilled to have this geriatrician on our side.  It makes me feel like I have back up in getting an accurate diagnosis and proceeding with whatever the outcome is.  Their office is a five minute drive, 15 minute walk from my parents' apartment and is in the same medical system as all of their other docs.  It seems like a great place.   Thanks all for your support and suggestions.  

Michael Ellenbogen

TThat is great.  Good doctors  are hard to find.

Iris L.

Stellar Daughter-In-Law wrote:

.  (She has been having odd leg pains at night that have been keeping her up.)  

Read up about restless legs syndrome.

Iris

jfkoc

Thanks for the update!

Stellar Daughter-In-Law

EVALUATION DIAGNOSIS / UPDATE

We had a follow up meeting with the Alzheimer's evaluation research team and they said she is fine - no Alz, no other kind of dementia, not even mild cognitive impairment.  She scored extremely high on all neuropsychological and cognitive tests - and man did they run many of them.  They said she likely has  extremely high executive function (true) and that normal age related brain atrophy feels to her like an extremely significant change but is just typical aging.

Her B12 is in the range of normal but on the lower end of normal so she will take more B12.  Easy.  I just spent 5 days with her and she seems remarkably better. 

I presume that the weight of the diagnosis being lifted from her shoulders has helped her mentally.  It could also be that her new geriatrician took her off 6 meds, she'd been keeping a sleep journal and is now getting steady uninterrupted sleep, and she has taken to heart a conversation in which I encouraged her to be more social.  She is going out to lunch with friends and joined a new book club.

Thank you all for your support and brainstorming as I waded through these avenues of investigation.  I have been down this road before as a caregiver and this discussion board helped me so much then as it did over this past month.  What a remarkable group of people you are! I'm most appreciative. 

jfkoc

Amazing!

What a great job!!!

SusanB-dil

Aww - sounds like Best Outcome Ever!!  Most excellent.

Mom is so blessed to have such an advocate!