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MargieRKB Asked October 2023

What have your experiences been with COVID and dementia?

My MIL with moderate dementia contracted COVID while in rehab last month. Her abilities sharply declined. She refused to do Physical Therapy after that. She is now in full assist memory care and seems to be in a lot of pain. Just bumping her foot or trying to move her makes her cry out "that hurts!"


I found an article by the NIH that states dementia patients with COVID all experienced a sharp decline in ability. The care facility states that has also been their experience.


What have your experiences been with COVID and dementia over time? Do they recover any of what they lost? The COVID was treated with antivirals and was not severe.

MTL1974 Oct 2023
Hi Margie,
so sorry to read about your MIL. My mother had dementia and other then being in the early(ish) moderate stage of the disease was perfectly healthy and mobile. Then end of October 2020 someone visiting the residence she was in had COVID. The residence immediately separated those who were in close contact with the visitor and began the safety protocols. Sadly pretty much the entire floor ended up testing positive. Not surprising since those with dementia are notorious for not wanting to wash their hands, wander into peoples rooms (or at least try so their hands are all over all the doorknobs) etc. my mother ended up testing positive and her only symptom was one day low grade fever but complete refusal of food and drinks and medications. My super sweet mother was suddenly angry and combative. This was the first time she had no idea who I was. The Covid caused a marked increase on her dementia. She was sent to the hospital to get her rehydrated. While there all the doctors and nurses said that they see it time and again that anyone with mild cognitive impairment seem to have their confusion and dementia progress to a deeper stage with COVID. This was still somewhat early in the COVID pandemic but they were saying most don’t seem to get back to their pre-COVID level of lucidity. Sadly my mother ended up passing away, since she refused all food and all fluids. I did get a court order to at least allow the hospital to give her IV fluids. Since the doctors were saying that she is not saying she wishes to pass away or that she is just tired, they hoped the not eating or drinking was from the COVID and once out of her system she could get some of her cognitive abilities back. In my mother’s case the fluids just seemed to give her the strength to state her wish to pass away. So I had to respect her wishes and told them to stop the IV but to keep offering her food and drinks with the hope she would take them. Sadly she refused aside from a bit of ice cream here and there. Later on I was speaking to some of the caregivers at my mothers residence and they said that those who survived COVID were never the same as before the illness.

please know that just because my experience with a person with dementia having their dementia get worse from COVID and not returning to their pre-COVID state does not mean all cases will be like that. My mother had what I guess could be called the original strain. That strain perhaps was causing more permanent damage then later strains do. There are so many variables.

as many here have said my belief is that COVID is not just a flu or a bad cold. It can be so much worse. It is almost like the inflammation a person can get from the illness reprograms our cells. You just have to look at all the long haulers to see it. We have no idea what the future will bring. Awhile back I recall reading that some scientists thought that perhaps some forms of cancer could’ve been caused by a flu or virus a person caught as a child causing our cells to mutate. It will be so difficult to know even decades from now what possible illnesses a person gets decades after contacting COVID were because of COVID. I think with having such a vast number of people having had COVID the sample is just too large to be able to narrow it down, if that makes any sense. It really frustrates me when people not only act like safety protocols are not for our own safety but are in some odd way a way for the government to control us? Or punish us? Why would all governments do that where is the benefit for them to do that! Anyway not to get into conspiracy theories.

in the end personally COVID caused my loved one’s dementia to progress overnight and that was their only COVID symptom. But it was early in the pandemic and perhaps the strains out now are not as strong.

I still wear my mask even though people look at me like I am crazy but I don’t want to get sick and I certainly do not want to get an at risk person seriously ill.

AlvaDeer Oct 2023
We are only just learning of long term effects. Today on NPR (access by accessing Morning Edition) they discussed the increase they are seeing in heart attacks and strokes. I just heard the other day of a man with a stoke that destroyed his vision. On NPR they say this will take years of study but recent studies show a marked increase in stroke and heart attack in those with know cardiovascular disease, especially involving any plaque. They believe that the cells of the vessels of the cardiovascular system are INFLAMMED and that this is an inflammatory process. They believe it can cause strokes/heart attacks/ clots right after covid or in weeks, months, and possibly years after.

It will be years of research but it's comforting to know they are started on it. I think we know very little about covid aftereffects at this time. So I would say this is anyone's guess. Who really knows or can say with any certainty?
Fawnby Oct 2023
I try to keep up with the research too. It's very interesting, especially in light of what I've observed within my own personal circle. The inflammatory process is especially interesting because perhaps there will be a way to prevent it once they know what they're preventing.

I am often discouraged when people insist that the pandemic is over and refuse to take precautions. They don't want to follow the studies; they just want to be free to do what they want. I wish they could have known the fine people in my life who died of Covid or are still suffering aftereffects. I can't believe that they don't know any themselves. Maybe they do but prefer for their own purposes to forget them.

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Fawnby Oct 2023
My friend who was sharp as a tack on every level before Covid in 2020 wasn't vaccinated. No vaccine was available at the time. His wife died 23 hours after the cough started. He had a mild case, only a bit of fever and slight cough. In a few weeks brain fog set in, and it never lifted. He donated plasma for treatments for other Covid patients and became part of a study about Covid aftereffects. He is still part of the study.

Unfortunately, his cognitive status is still in big decline. I was told that brain studies indicate that he won't recover what he has lost. A year ago he moved into assisted living and will transition to memory care when necessary.

It's believed that Covid was brought into their home by a physical therapist who was working with his wife on recovering from a leg injury. That's the only person who had been near them during isolation.

I know of others with similar situations - one of my neighbors, also a former neighbor. The vaccine didn't cause cognitive decline. Covid did.

Twelve of my friends and acquaintances have died of Covid itself. There may be others that I don't know of. I do know people who have permanent lung damage, heart damage, and obvious brain fog from Covid, not the vaccine. I certainly don't know any who died of the vaccine.

Covid is still a real threat to all of us - anyone elderly, anyone with a comorbidity (do you know what yours are?), and particularly dementia patients. My neighbor is a retired contagious disease nurse. Her husband is a diabetic. They continue to isolate as much as possible.

Based on all that I personally know, I wouldn't expect anyone with dementia who gets Covid to regain much mental capacity, if any.

Geaton777 Oct 2023
My MIL is in LTC facility. She got the first iteration of Covid in May 2020 and was so sick we had her sons fly in to say goodbye to her. The facility recommended hospice, and after 4 weeks of no extra anything other than pain meds, she recovered fully. BUT, she didn't have any other pre-existing health conditions, either. Other than cognitively, she is very healthy. Prior to covid she had moderate impaired memory and mild dementia. She is back to that baseline now.

funkygrandma59 Oct 2023
I was just talking to a woman I know(acquaintance really)yesterday whose mother after receiving the Covid shots started showing signs of mental decline, and she was sure that it wasn't just coincidental.
It's just sad either way, if from Covid itself or from the shot itself.
But your MIL's pain is more than likely related to her dementia as once the brain is broken the pain signals get all messed up. My late husband who had vascular dementia lived in pain for the last 3 years of his life and when asked where he hurt he would reply all over.
I don't know if your MIL's abilities will improve over time, but what I do know is that with dementia things only get worse never better.

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