TAVR on Alzheimer's patient
My mother is 87 years old with middle stage Alzheimer's disease. She has aortic stenosis condition and her cardiologist advise her to have TAVR procedure within the next 12 month. We're concerned about how the general anaesthesia will affect her Alz/dementia. I would like to learn if any of your loved one or relatives had this procedure done. What was your experience, could you share?
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Dementia in TAVR Patients Raises Several Risks, But Not Mortality
Found this on the Cleveland Clinic website… hope it’s helpful
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- One of the takeaways: "Dementia entails additional risks from TAVR. These include in-hospital delirium, bleeding, longer hospital stay and discharge to a rehabilitation facility." was helpful in the article you shared. Thank you :)
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Hi and welcome. I am sorry for your reason to be here but glad you found this place.
There are no easy answers when making such a consequential decision for a loved one. I would encourage you to read Being Mortal and then discuss with her PCP and neurologist.
My mom-- who does not have dementia-- had TAVR at 84. I would not have signed off on the surgery for my dad by the time he was in the middle stages of dementia as I would have wanted to spare him the later stages of dementia. I am certain that would have been the choice he would make before dementia. I would have brought in hospice instead.
Her age, the stage of dementia and her wishes factor in here.
There is always a risk of progression from anesthesia and even a hospitalization. The anesthesiologist warned my mom that she would be strapped to the table spread eagle for the procedure and she might waken during the procedure. She does vaguely remember that happening.
There is a possibility that the TAVR will irritate the heart and require your mom to have a pacemaker. The decision to do this is often made during the procedure or in the first month or so. A pacemaker comes with some maintenance and the emotional weight of family deciding if and when to deactivate it.
Wishing you peace as you make your decision.
HB
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My DH (65, FTD, stage 6) has a stenotic aortic valve. He was resistant to having the TAVR when he still made his medical decisions. That resistance was possibly (probably) due to early FTD, but hindsight is 20/20. After discussion with his cardiologist and a lot of soul searching, we are not having the procedure. I struggled with this decision. In the end I looked at the potential impact of anesthesia, potential complications, and what the other side of the procedure would be like.
All the best to you and your mom.
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Hi,
You raise valid concerns about recovery. Sometimes the focus of an initial recommendation is 'can' it be done, rather than 'should' it be done, not taking into account decreased patient capabilities or increased caregiver needs. People who haven't had to caregive to a PWD might not understand that a slight decrease in cognition can = a big jump in needs and quality of life. I personally don't think I'd opt in for my mom at stage 5 and age 94 as long as she could be kept comfortable otherwise. She really wouldn't want to hang on to get to stage 7, given her druthers.
If you're struggling with it (who wouldn't?) it might be worth asking her cardiologist that Geriatrics or Palliative care be consulted to help you talk through the risk vs. benefit scenario before saying yes or no to a referral to the TAVR Team, or you can say yes to the referral and ask that they be involved in discussing the feasibility of a TAVR during the decision-making process.
If you were to decide to procede with a TAVR referral, the TAVR team should carefully weigh the quality of life pros and cons with you, taking into account your mother's activity level, and discuss what outcomes would look like with agressive medical management vs. TAVR. They may even think that the risks outweigh the benefits and defer on performing the procedure.
It's not outrageous to ask the team to give you examples of how they've managed 85+ year old TAVR patients with dementia that they've treated, and what outcomes they've had--these patients are entered into an outcomes registry as required by CMS.
Consideration should be given to your mother's frailty. Frailty will have an impact on a person's recovery and rehab. The frailty scale the American College of Cardiology uses equates the level of dementia (mild/mod/severe) to the level of frailty, and of course other risk factors would be layered upon that too.
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"There is a possibility that the TAVR will irritate the heart and require your mom to have a pacemaker. The decision to do this is often made during the procedure or in the first month or so. A pacemaker comes with some maintenance and the emotional weight of family deciding if and when to deactivate it."
My mother's caridiologist warned me about the exact senario and it's good to hear this from other family caregiver as well. Thank you for sharing our parents stories, the book title and your wisdom in making medical and caring decisions.
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Hi Jeanne,
Thank you for sharing your experience in making decision for your DH's TAVR procedure. I can certaily understand what you had to go through to reach the decison you made.
Best for you and your DH as well.
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I'm glad your surgeon did mention the potential for a pacemaker. Mom's did not. Right after the surgery, she had a short period of irregular heartbeats and was sent home for 30 days with a wearable real-time monitor which showed things had settled down so she didn't get one.
My DH, 76, is in watch and wait mode for TAVR; he was born with a bicuspid valve so it's more prone to leaking. At this point he's treated with a cocktail of meds and is doing well. I asked his cardiologist about doing TAVR proactively and the doc said it would be better to wait in DH's case. There's a risk of a drop in cognition after the procedure and the doc didn't want to risk it given that DH is a very cerebral person-- the man reads about 4-5 books a week. Math is his hobby and physics, chemistry and history books litter the house. It would be a huge quality of life issue if DH didn't have that.
That said, we knew mom was being watched for valvular issues but at the time of her last catherization the interventionalist was of the opinion she wouldn't be a candidate for 5 years-- 16 months later, she was very symptomatic. One thing I notice with my mom is that she's less clear headed when her O2 levels drop. When this happens, she seems like she's developing early-stage dementia. She was forgetful, a little paranoid, and putting her own confabulated spin on things by the time she got to surgery but bounced back to her normal baseline. This happens sometimes, too, but I don't know how dementia factors into it.
We were told mom's life expectancy without the TAVR would be 1-3 years. Depending where mom is in her dementia progression, she could pass with in that time or have a quality of life that is not what anyone would want for her. By the time dad hit late stage 6, I wished for a release from all that was happening to him-- he was confused and angry and his quality of life was awful. When he died from complications of aspiration pneumonia in his sleep it felt like a blessing he never had to endure losing his recall of who mom was or his ability to talk.
HB
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Hi Emily,
Your insightful response is much appreciated. I toally agree with your statement: "I personally don't think I'd opt in for my mom at stage 5 and age 94 as long as she could be kept comfortable otherwise. She really wouldn't want to hang on to get to stage 7, given her druthers."
Thank you for including the clinical frailty scale. It is very helpful.
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> @Secondhelper36 said:
> My mother is 87 years old with middle stage Alzheimer's disease. She has aortic stenosis condition and her cardiologist advise her to have TAVR procedure within the next 12 month. We're concerned about how the general anaesthesia will affect her Alz/dementia. I would like to learn if any of your loved one or relatives had this procedure done. What was your experience, could you share?
Hi there! I was caregiver for my mom who had dementia; she was in mid to late-stage dementia by the time she was 87. I had noticed she was frightened by just about any/ all medical events, even a simple blood test would make her whole arm and shoulder shake, due to the fear. This is because she could no longer discern such things, which made them scary.
Seeing this, I stopped taking her for routine bloodwork, and only took her for necessary doctor visits. I spoke to her pcp, who agreed with my decision to avoid taking her for routine testing and the like, and any unnecessary procedures. I know she would have wanted it that way, so I focused on comfort measures, rather than life extension procedures. She lived an additional 2-3 years, eventually passing at late-stage dementia.
You must decide if it's worth extending life (potentially), at such an advanced age already. Consider the ongoing reduced quality of life with the advancing stages of this disease. Ask yourself what your parent would have wanted before dementia, if they could see into the future, and find peace with your insights. Good luck and best wishes!0 -
Hi HB,
Your DH is fortunate to have a cardiologist who advocates for the best interests of his patient's quality of life over TAVR.
For the last 5-6 yrs, my mom was warned about one day she will need TAVR procedure. During the most recent cardiologist rountine visit, she was told the condition of the valve stayed the same for the last two years and continue twice a year routine visits. The very eveving, my mother had a unwitnessed fall at home. I rushed to her side as soon as hearing the comotion. She was in somewhat confused state, but was clearly aware of her fall. I took her to ER in case of a stroke. She had a full examination, CT of the head & neck, and blood lab works on a scheduled intervals. The CT result didn't raise any concerns of a stoke, or other issues. I gave the truma unit doc all the medical conditions mom has including the Aortic Stenosis. She stayed in hospital for 4 days, mainly due to her bp upper number stayed 140 to 180 ranges, low patassium level and a long wait to do the stat echocardiogram. The echocardiogram result promted the cardiologist at the hospital to advise TAVR procedure to lessen her future falls.
I do take my mother's fall seriously, but TAVR procedure against her advanced ALZ tells me I can't take this procedure lightly either. I had a virtual consultation with mom's PCP 6 days ago, her advise was TAVR may bring some benefits but utlimately ALZ/Dementia will override everthing at the end. It was a strong reality to swallow, but I need to accept that truth.
I really appreciate very much how you share with me about your mom's before and after TAVR procedure and your dad's dementia journey. I am happy to hear your mom bounced back to her normal baseline now.
SH36
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Hi Be Kind,
I really appricate your advice:
"You must decide if it's worth extending life (potentially), at such an advanced age already. Consider the ongoing reduced quality of life with the advancing stages of this disease. Ask yourself what your parent would have wanted before dementia, if they could see into the future, and find peace with your insights."
I like your story about how you noticed your mom's fears towards medical events and actions you took,
"to focus on comfort measures, rather than life extension procedures."
My mom certainly shares similar behaviors. She becomes very anxious at doctor's waiting room or examination room, quarterly rountine dental cleaning can make her fatiqued, so she closes her mouth, sometimes using public bathroom can make her feel uneasy or fearful from being lost there, so she ask me don't leave her there alone, etc.
Your story helps me a lot, thank you and wish you all the best.
SH36
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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