Rapid Onset Dementia Question

ohmom

After nine months of isolation during the pandemic lockdown, my mother shifted suddenly into cognitive decline with extreme short-term memory problems and eventually confusion and dementia.  After a fall six months into the decline, she passed away a month later.

My question is how common is it for there to be a sudden shift into dementia and has anyone else experienced this?

I had seen signs of cognitive issues for some years, memory and processing issues, but these came and went and were never constant.  I definitely noticed an increase in SOMETHING from about 2018 on, but my mother was so high-functioning and strong-willed that I didn’t see any signs of lifestyle concern.

In retrospect, I also did not understand that dementia/Alzheimer’s/etc. are in essence “terminal” diseases.  I did so much research out of concern for my mom and read that people can pass away, but it never hit home with the immediacy of understanding the word “cancer” makes us feel.  I think this is a problem related to messaging about the disease and would like to see the lead of every article begin with a statement like “cognitive decline is terminal.”

I have come to understand that my mother may have compensated for some of her cognitive issues, but leading up to the pandemic, she was still living independently and very much in control of her life.  I believe the isolation played a role in her decline.  

She stopped taking the thyroid medication she had taken most of her adult life but thought she was taking it.  I think she slid into a deep hypothyroid state until we got the medication addressed, but it’s hard to know if that triggered the cognitive decline or if the cognitive decline triggered the memory issues that led to the medication problem or a mix of both.

There is much I would do differently if I had a full understanding of how suddenly mild cognitive decline can shift into a deeper, irreversible state.  Or maybe that’s how it works with everyone who is afflicted with these diseases?

Did your loved ones shift suddenly into deep cognitive decline or was it gradual?

Ed1937

Ohmom, welcome to the forum. I'm sorry for your loss. Any time we hear of a sudden change, we always think of an infection of some kind. UTIs are very common, and it is usually one of the first things we check for. That does not mean that the decline is not dementia related, but the possibility is real for infection, and that should be ruled out. There are also other things like brain tumors or other conditions that could cause it. 

Was she ever officially diagnosed with dementia after thorough testing was done to rule out any other cause for the symptoms? If so, which type of dementia was it, if known. Some types of dementia are more common to rather sudden changes than are typical. Most of the people here will tell you that the decline is/was more consistent than what you describe. My wife was diagnosed with probable vascular dementia, but I think it more likely was Alzheimer's. Her decline was slow and rather consistent. 

Iris L.

Your mom had a serious fall.  Falls are deceptive, they may seem unremarkable, but the fatality rate after a serious fall is twenty-five percent.  Your mom had hypothyroidism, did she also have cardiac disease?  Sudden diseases, such as UTI, can develop into sepsis and cause sudden death.  What did the doctor write on the death certificate?

Iris

ohmom

Like I wrote, she had stopped taking her thyroid meds.  I noticed a shift over a period of a month or so before what I refer to as the shift into cognitive decline.  I think I forgot to mention that I had them test thyroid and her tsh was 100 (usually 1.5-2.5 when on meds).  So she was likely quite depleted from hypothyroidism when the shift occurred.  UTIs were tested for and ruled out.  It seems possible she could have had the coronavirus too, though she lived alone and independently.

We were only able to get her to a neurologist a few months before she passed away.  There was never an official diagnosis but the doctor out Alzheimer’s on the death certificate.  The skilled nursing doctor in the retirement community said she likely had cognitive issues for a long time.  

Iris L.

Patients with very low thyroid hormone can go into a coma.  It is possible that her hypothyroid condition contributed to her rapid decline and death.  It is impossible to know now.  I surmise no autopsy was done.  In any case, Alzheimer's Disease by itself is terminal.  Many patients expire from a different disease pathology besides Alzheimer's Disease. 

There is a message board for members who have lost someone.  You might also try to post there.

Iris

harshedbuzz

ohmom-

I am sorry for the loss of your dear mom. 

If I had to hazard a guess, I would say the cognitive shift into dementia caused her to skip her thyroid medication which cascaded from there. The management of medication (seeing the doctor for testing, filling the prescription and taking it appropriately is an Instrumental Activity of Daily Living. IADLs are the abilities we learn as teenagers and young adults. In dementia IADLs are lost first and include things like driving safely and managing personal finances. 

I would also expect that had your mom been treated for myxedema and survived you would have seen some improvement in cognition. 

The differences you noticed in 2018 were likely indications of early to early-middle stage Alzheimer's. Alzheimer's tends to progress steadily as compared to vascular dementia which tends to follow a series of plateaus followed by obvious steep declines.

I am sorry you didn't realize that she had a terminal disease. The dementias are all terminal; unlike cancer, there are no survivors. I knew this, but when my dad's neurologist told my parents dad had Alzheimer's on their 60th wedding anniversary, no less, they had no idea. The doctor told him patients could live 10, 15 or even 20 years with the condition to which dad said "best thing I've heard all day". I explained the prognosis to my mom later on the train going home.

On one hand, I do think medical professionals should be upfront about the prognosis, but perhaps that isn't always ideal for the PWD who no longer has the cognition to process the information. Some families really don't want to put that burden on their LO. Anecdotally, it seems like neurologists are more likely to share the prognosis than PCPs who might have a long-standing relationship with the person they're diagnosing. PCP often diagnose MCI rather than Alzheimer's and refer their patients out for further testing. 

Your experience of being blindsided by the brevity of the disease, sadly, not unusual. I have a friend whose mom lived about 2 hours away in a large retirement community. Mom had been widowed for years and was fiercely independent albeit quirky. Mom loved to travel; she served in the Peace Corps after retiring and then worked as a tour guide on international tours-- the woman had been everywhere including Antarctica. The last 10 years or so, mom got quirkier-- she made a hard right-turn politically, became an anti-vaxxer (her Peace Corps work was in vaccines), started with questionable alternative medical stuff which made her biochemistry professor daughter upset. 

About a year before COVID, mom had a bad fall and broke her hip. It was a long haul back to baseline physically, but she was back to driving when COVID shut things down. Although she lived in her own cottage, the CCRC didn't allow folks to leave the community and return which shut down all mom's activities. When things started opening up, mom went on a trip, contracted COVID. She did pretty well for a week or so and then took turn. She was found on the floor of her cottage and taken back to the hospital where a CT scan of her head from the hip fracture fall was compared to a new scan that showed significant changes in a relatively short time. MOM's death certificate states COVID as cause of death with Alzheimer's as a contributing factor. 

We had a similar thing in my family as well. Dad was diagnosed in the hospital because of a dramatic psychotic episode caused by his alcohol-related dementia in late 2016. When the doctors took a history from my mom, she described this as an acute onset situation. She'd been in denial about dad's memory and personality changes for almost a decade. I talked to the resident later and shared what I'd seen-- a personality change and lack of social filter as early as 2005, significant memory lapses and confabulation by 2008. The hospital got dad stable by supplementing his Thiamine and referred him to their memory clinic which officially diagnosed him just after Christmas of that year. He progressed rapidly and died in April 2018 from complications of aspiration pneumonia which is common in Alzheimer's. If you asked my mother, she would describe the course of his illness as very fast- 18 months; I would say he probably lived with dementia for close to 15 years. 

HB

ohmom

Thanks HB, very thoughtful and helpful post.

I think you are probably right that cognitive issues led to my mother not taking her thyroid medication.  TSH increases slowly when medication is stopped, so it would have been a slow decline like in retrospect I observed, increased fatigue and memory issues at night, mainly forgetting words.  

Based on what I’ve read since about the stages of Alzheimer’s, she progressed through nearly all of them in a short amount of time, basically the seven or eight months before she passed, but likely had cognitive issues for years.

My mother was never diagnosed with Alzheimer’s.  I only read about it and cognitive issues in general because I was trying to figure out what was going on with her and was trying to get her to see a neurologist.  She did agree finally, and I think one other time earlier, but she also passed some neurological tests previously as part of her yearly physicals.  

Had we actually gotten a diagnosis, I’m quite sure my perspective would have been altered.  And had I lived near my mother, perhaps things would have been different too.  I was going to move near her but then the pandemic hit.

I got her thyroid levels normalized with help from the retirement community after testing but the Diabetes 2 remained a problem.  I think that was a factor too.  She never fully got the diet that was best for her even though she saw great results when eating what I advised her to eat.  She had also stopped taking two diabetes meds.  

After I had to send her to the hospital at one point for change of condition into a state of agitation, she spent time in skilled nursing to get her thyroid and diabetes under control and do some rehab.  I finally got her to the neurologist.  He did not make an official diagnosis other than to say the memory problem and things I observed were real.

He prescribed Razadyne for memory and Paxil for the extreme anxiety she had been experiencing for months.

Oh how I tried to get her doctors to do something for the anxiety and crying to give her relief.

Over a period of weeks taking the Razadyne, she descended deeper and deeper into dementia and began to lose her ability to balance, recognize objects, and understand some directions, like when I suggested she stay in bed she did the opposite and got out of bed and at another time tried to push her walker into a wall thinking she was going somewhere.

I wondered if the Razadyne drove her further into cognitive decline.  After she fell, went to the hospital, and then the hospice care home, she finally got helpful doses of Ativan and Seroquel, got a lot of sleep, and slowly began healing from the fall.  There were some brief moments of semi-clarity and she even cracked a few jokes.  It seemed like something had shifted back in the right direction, and also her voice returned to normal from the strange, child-like high-pitched tone it had taken.  I knew there were only challenges ahead because she would probably fall again, but the endless anxiety was finally quelled.

The other things that disturbs me are those moments of clarity and not knowing what was going through my mother’s mind at any given time.  In retrospect, there were a lot of these little windows that convinced me she was still in there and made me feel hopeful I could get her out of what she was stuck in if I just found the right treatments.  Perhaps this was wishful thinking but it was my way of fighting for her.  Except for short-term memory loss that was the dominant symptom until things shifted into higher gear, she was very much herself, but seemingly lacking full awareness of the big picture of what was going on with her.  

It was a very strange experience.  The decline was so fast and had so many shifts into different gears that I never had time to get into a steady caregiving rhythm like I read a lot of on here.  I’ve learned a lot since she passed away.