Dementia and Covid Vaccine

SonShine Lady

Does anyone have a loved one with dementia who took the Covid vaccine?  I would be interested if they had any side effects afterwards.  Per my step-father's request, my mother was given the vaccine last Monday.  I visited on Tuesday and, after months of regular visits where my mother was what I call "her normal," Tuesday she was behaving like she did at home before going to the memory care facility and got her meds regularly.  She was agitated, angry, paranoid, delusional, etc.  She wasn't wearing her dentures (VERY, VERY unusual for her) because they "weren't hers," said due to the virus the facility had made new rules: she could only wear one watch and one ring (she loves jewelry), could not have any candy, visitors couldn't bring anything to her at all, and at 6:30 am the next morning she was to report to the lobby to go on a boat for 21 days and was concerned she didn't have any warm clothes."  I knew that wasn't true but, just in case there were some rules of which I wasn't aware, I found her nurse and relayed what Mother said.  She went back into Mother's room with me and assured her she could eat anything she wanted, wear any jewelry she wished, and wasn't going anywhere the next day.

As I was leaving, the head nurse ran over to me and asked how Mother was, which I found odd.  She is usually busy and I have to specifically ask to speak with her.  I said she was in major dementia mode. Nurse said, "Well, she had her second vaccine yesterday and that can cause confusion."  Whoa!  Based on what the facility's director told my step-father, Mother was getting her first dose on Monday.   I'm going back to visit tomorrow and plan to talk to the director since we're getting conflicting info.

Mainly wanted to check in here to see how others with dementia are handling the vaccine.

Cynbar

My DH has had both doses and had no negative effects at all. Just one person's report....... Maybe something else is going on with your mother, so hard to know

LaurenB

I haven't had any personal encounters with bad reactions, but it could be any number of things impacting your mom's abilities.  Could be a UTI, poor sleep, unfamiliar staff interacting with her, a well meaning activities coordinator setting up an activity for the residents to "take a cruise" and your mom has fully bought in.  I'd suggest talking with the nurse.  It is possible that your dad could have gotten the information wrong as well.  Good luck.  I know that you'll get the best answer by consulting with the nurse as well as getting info from your dad PLUS your own observations of your mom's changed behavior.

MN Chickadee

I have heard many people feel gross for a couple days after the second dose, so if she did indeed have her second it might be that her immune system is flaring up a little and causing confusion.  Hopefully it passes soon. Also check for UTI and other things that could be a coincidence in timing. My mother has late stage Alz and had the first dose with no side effects.

SonShine Lady

Thank you all for your responses - it really helps!  I wouldn't have thought anything more than she was having a bad day until the head nurse flagged me down.  If she's in a similar mood today I'll ask about a test for UTIs to rule that out (thank you for that reminder!).

Marie58

My DH is in a MC facility and has received both vaccine doses. He's nonverbal so can't tell the staff how he feels. But both times he was less active for a few days after the vaccine. Less pacing and more time in his recliner in his room. But no fever, signs of headache, agitation, etc. There seems to be more symptoms with 2nd vaccine for many people. I agree you should check other things if she's not back to her 'normal' a few days after the vaccine.

Rescue mom

I have family with dementia who are in an ALF. They all got their two vaccine doses with no unusual side effects. A few seemed to have some arm soreness and sniffles—nothing behavioral or dementia related—after the second dose, but staff said that’s common for the second dose, which fits everything I’ve read about it.

My DH with midstage Alzheimer’s had the first dose with no side effects. He gets the second one next week.

Re: the conflicting messages you’ve gotten, IME in general, second and third-hand information, especially about medical matters, can get a little more confusing with each telling. First-hand is always good. Just IME...

SonShine Lady

Marie - thank you for sharing your experience.  When Mother said she didn't feel well I asked if she had chills, a fever, felt like she had the flu and she said no.  I said so you don't feel well mentally/emotionally?  Without missing a beat she shot back, "Yes!  That's why I'm in here."  If I hadn't been so worried I would have laughed with her.  She's still feisty!!  It's from the Irish side of the family. *Grins*

SonShine Lady

Rescue Mom - Thank you so much for the info from your experiences.  I agree information relayed can become like the old game of "telephone."  In this case my step-father received the initial information (ie. which "brand" of vaccine and that it was the first shot) from the Director of the Facility when he was contacted to see if he wanted Mother to have the vaccine.  I wouldn't have known any different if the Manager/Head Nurse had not approached me stating it wasn't unusual for confusion with the "second shot."  Director told step-father Mother would get the Moderna vaccine; Manager said it was Pfizer.  I expect the Director and Manager of a facility to be on the same page.  That's a bit concerning.

MattyBoy

hey... i am here to REPORT that my MOM had DOSE 1... and was COMPLETELY ODD for THREE DAYS after... like she REGRESSED... i did not attribute it to the VACCINNE... but her AIDE did... and NOW i agree... it was RELATED to the VACCINE... because 3 days later, she was back to her OLD (new!) SELF...

i was CONCERNED and UPSET... but, ultimately, HAPPY too ATTRIBUTE it to something...

we go for DOSE 2 in a week... and i am NOW prepared for THREE DAYS of REGRESSION... 

well, not exactly PREPARED... but READY to "DEAL" !!

LovingAwareness

Dad had his first dose of the Pfizer Jan. 26, and we thought we noticed some worse than normal confusion that night. Not dramatic, but we did notice it. He tried to put his pajama pants on over his head, arms through the pant legs, which he had never done before. I think it was transitory, but hard to tell, because he is surprising us nearly daily now with new incidents of confusion. He had no other effects. His second dose is 2/16, so we'll be watching him. I was wondering if other people had noticed any similar effects. I don't think it was lasting damage and definitely worth it for him to reduce the risk of the virus.

BassetHoundAnn

My mom had her first dose and didn't have any physical effects besides a mildly sore arm. For three days afterward she was acting loopy but her dementia does cycle off and on in a regular 3-4 day pattern so it probably wasn't due to the vaccine. To get the shot I had to take her from her residence, get her dressed, drive her to the doctor, sit out in the car, etc. I figured that the breakup in the routine with all the stress and exertion may have been what touched off a couple days of loopiness. That's usually how it works with her.

SonShine Lady

Thank you so much MattyBoy, LovingAwareness, and BassetHoundAnn for sharing what you observed.  My step-father thinks that the vaccine temporarily overrides medications.  That seems to be what happened with my mother since her behavior the day after the vaccination was identical to how she was the last month at home while refusing to take her meds.  The three day time frame you mention, Matty, is similar to what I noticed as well.  I was SO relieved to see Mother pretty much back to her "old (new) self" when I visited yesterday which was three days after the vaccine.  Her beautiful smile had returned, she was calm and putting away her laundry that had apparently been delivered just prior to my arrival.  She was pleased to see me, thanked me for coming and asked me to come visit any time.  The only thing still "off" is her belief that she can no longer wear jewelry due to "the virus" and "new facility rules."  The odd thing is that she had been totally oblivious to Covid, lock downs, etc. until the vaccination. I hope that thought goes away as she so loves her jewelry.  Even when she was extremely ill and frail at home, she always had on a favorite ring and/or bracelet and said it made her happy to look at them.  Until last Tuesday she always wore jewelry.  But, all in all...if that's the worst thing that lingers, we're blessed. 

Haven't spoken with the director yet so still don't know if she has had one or two vaccinations and if it was Moderna or Pfizer.  A medical company came to Mother's facility to administer the vaccines.

GothicGremlin

My sister had both doses of the Pfizer vaccine with no ill effects, other than a slightly sore arm. I haven't seen any kind of cognitive decline that I can attribute to the vaccine.

Wilted Daughter

What vaccine did she receive? Mom's first shot was last week, next shot is end of month. She received the Pfizer vaccine. No changes in mood, etc. noticed so far. 

Traf1978

Thanks for the post.  My mom is scheduled to have the first vaccine next week and I hope they tell her the possible side effects.  I live over 600 miles from her so I really can't do to much and I know not everyone will have side effects or the same kind of side effects.  My mom is very confused about most things and I hope that things don't get worse from the vaccine because she will not go for the second one.

SonShine Lady

@Wilted Daughter - The facility Director told my step-father that my mother was getting her first shot and it would be the Moderna brand.  Moderna is the most prevalent vaccine given in Florida; however, the day I visited her after the vaccine when she was angry, agitated, delusional, and saying she could no longer wear jewelry, receive gifts, eat certain foods, etc. "because of the virus" the Nurse Manager told me Mother had received the SECOND shot and it was Pfizer.  My step-father and I determined to get to the bottom of this as we have been given conflicting info before, but on minor issues.  

Step-father spoke with the Director this week to arrange for him to take my mother to her appointment at the heart specialist & during their conversation he questioned the vaccine issue.  Turns out it WAS her second shot.  He did not ask which brand it was but, considering the nurse manager was correct about her having two shots, she most likely did have the Pfizer.  What broke my heart was when she told me if she hadn't taken the vaccine she would have been "evicted" (which leads me to believe she resisted) then said angrily, "And I never even took the flu shot!!"  (My step-father knew that and told the facility not to give that to her when they called to ask.)  I am so upset but this was totally out of my hands AND my mother's since my step-father is her health care surrogate.  I told her that she was given the vaccine because it was my step-father's decision, who she had chosen for her surrogate.  I wanted to state the truth whether she could assimilate it or not.

Last Wednesday step-father took her to her heart specialist appointment.  I called yesterday to see how Mother was.  She did not speak to him the entire drive to the doctor's office, did not respond to the doctor, did not speak on the way back.  Mother normally enjoys going on a drive.  I asked if she got into the car voluntarily; he said two attendants had to put her in.  I asked if she seemed disoriented and he said no, she was "bulled up."  By that he meant she was angry and expressed it by refusing to talk.  He said, "She doesn't like to go to doctors so she was mad about that;" however, I'm 90% sure I recall him taking her from the facility to doctors before and Mother was happy to get out.  He was angry about the whole thing.

In the meantime, having some health issues myself so haven't been able to get visit this week but going to make an effort to go Saturday or Monday to see how she's doing.

BassetHoundAnn

SonShine Lady: Were the shots given at least 3 weeks apart? If the Pfizer shots are administered less than 3 weeks apart the second shot can deliver some horrible side effects. Pfizer originally specified that the shots be given 2 weeks apart until reports started to roll in of intense side effects. 

My DH had the Pfizer shots 3 weeks apart and after the second shot was quite sick and miserable for nearly a week. He doesn't have dementia but it was apparent to me the day after the second shot that he was uncharacteristically sad and ornery and just not himself. 

For the record the two shots can be administered up to 6 weeks apart. 

RaymondP

My 82 yo mother received both doses of the Pfizer vaccine with little or no side affects at her memory care facility. Obviously the vaccine can affect individuals quite differently. Even if there were side affects I feel much better that my mother is protected from the terrible potential issues associated with getting Covid-19.

Emily 123

My Mom, 91, with AD and a history of hypertension, had Pfizer vax #1 on Monday. A little sluggish, groggy, and hoarse on Tuesday, otherwise OK. Fingers crossed for dose #2.   My understanding is that older people seem to do fairly well physically with it as long as there aren't major comorbidities.

I had vax # 2 in my left arm about 2 weeks ago, and was glad I had it on a Friday. I received it at 0930, started feeling tired by 2 PM, with the classic covid-type headace that lasted overnight. Not very hungry and went to bed early, and may have had a mild fever for a little bit.  Saturday morning was the worst it got, and it felt like a minor flu-- the headache, kind of run down, plus the injection site and a lymph node in my left armpit were tender. This is normal, and a sign that vaccine # 1 worked to build up resistance for #2. I took a tylenol, had some coffee, and a nice walk with the dogs, and felt pretty good by lunchtime though I went to bed early Sat/Sun.

BassetHoundAnn

My mom, 94, had the second shot (Pfizer) last week and didn't suffer any side effects.

MattyBoy

hey... just DOUBLING BACK... and letting you know that my MOM had DOSE 2 of the VACCINE... and it was the SAME EXACT AFTERMATH... 3 SOLID DAYS of a REGRESSION... hallucinations, odd sleeping habits, behavior i saw before she "stabilized" with her current DRUG COCKTAIL...

this is not a BAD REPORT... i was PREPARED for it this time... so i did not let it surprise me... and i was grateful (on the 4th day!) when she returned to her OLD (NEW!) SELF !!!

the extra (comforting!) bonus of her being FULLY VACCINATED is/was worth those troublesome/worrisome days !!!

just thought i'd let you guys know !!!

hope you are having a LOVELY WEEK !!!

LovingAwareness

Circling back here too - Dad, 84, had his second dose of the Pfizer Tuesday at his daycare, and again had no sickness or physical symptoms. He seemed a little more confused than usual Tuesday night and Wednesday, but nothing really alarming or outside of his current range. We are grateful and relieved.

Wilted Daughter

Hi Sonshinelady,

Receiving two different vaccines...hmmm? We're in the NE. When scheduling through state site we selected Walgreens site. They informed it was the Pfizer vaccine and they scheduled second shot at the time of the first shot, but shots are said to be Pfizer.

I received vaccine at another location (not Walgreens) and was administered Moderna (2 days arm was sore). Issued a card, as was my mom, which must be shown before receiving the second shot. Both shots are scheduled to be Moderna. I have not heard, in this area, of administering different shots for first/second visits. 

cdc.gov/coronavirus/2019-ncov/vaccines/different-vaccines.html

See: "Should you mix and match COVID-19 vaccines? Scientist seek answers." Jon Cohen, 02/12/21. ScienceMag.org