Hi SBL83,

I am sorry to hear that your husband is in need of 2 major surgeries. Dementia and anesthesia do not go well together. When anyone has surgery, there is always risks with anesthesia and especially for someone with dementia. It is very common for anesthesia to worsen the cognitive function of someone with dementia, it sets them back and most of the time, the person does not come back to baseline before surgery. With surgery there is also the possibility of post operative delirium. Every person with dementia is different and like many medications, they affect everyone differently. 

My mother broke both her hips over a 5 year period and her cognitive function declined after each surgery and she never returned to her baseline. 

It is very important that the surgeons are aware of the dementia as well as the anesthesiologist. You have to remember, the surgeons are in it for fixing a problem and most times for the money.  I am not sure how far into this disease your husband is but with any surgery, you want to way the risks. Which surgery will benefit him the most so that he has some quality of life left? It sounds like a 10 hour spine surgery is pretty dramatic. What have the doctors said about his prognosis after each surgery? Is he functioning enough to be able to go through physical therapy after each surgery? Is he healthy enough to sustain 2 major surgeries? Will you be able to stay with him at the hospital as someone with dementia should never be left alone. The hospital will not have the staff to sit with him and rehab facilities are just as bad unless you find one that specializes in caring for dementia patients. 

Again, so sorry you are having to go through the stress of these major decisions. I hope everything works out for you both.

what a tough position to be in for him.

Is he able to give his opinion? My father broke his hip and had it repaired, however infection set in and that is how he died. 

If his issue is pain maybe there is a way to control his pain and things to make sitting and lying down more comfortable.

Very upsetting that no one seems to be addressing the cognitive changes that could happen from both the anesthesia and the surgery and the recovery period.

Thank you Tink4495 and alz+,

I appreciate your helpful responses.  He is still in the earlier stages of Alz, with some stage 4 or 5 symptoms.  He can definitely provide input and make some decisions, but I’m not sure he totally understands what could happen to his brain and cognition if he has the surgery.   He knows there are risks involved, so he agrees we should see what the pain management doctor can offer.  We have made it very clear to all of the doctors that we don’t want him to be given a bunch of pain pills.  They have mentioned inserting a nerve stimulator in his back, but even that requires an hour or two or anesthesia , which scares me.   For now, we will probably try an epidural injection in the spine, but they said it’s a shot in the dark because he has so many discs involved.  It may not he,p at all.  The knee surgery is on hold too.

I’m just frustrated that we see so many specialists, and yet none seem to want to make the definite call or give solid statistics etc.  They are all nice and sympathetic, but we need solid advice.   You would think the neurologist at the memory care center would be able to give a definite opinion!

Thanks for listening and thanks for the advice.  Thinking of you all as you battle this difficult disease.

Thoughts and prayers,

SBL83 

My sweetie also had several surgeries during his normal pressure hydro dementia journey.  The manifestations and course of NPH is different than Alzheimers but the anesthesia and hospital stay concerns are exactly alike.  

E-chem's point about having someone in the hospital with him 24 hours a day is something to really try hard to achieve.  Like her DH mine would never press the call button even if it was attached to his hand, when the nurses station screams through the wall speaker it is very disconcerting and confusing, etc.

Regarding anesthesia - the advice to tell everyone is also absolutely important but be aware that there are many times during the operation process when the staff wants to take our LOs without us around.  THis will happen when they call him to the pre-op area to undress him, get him hooked up to monitors, ask all kinds of questions, etc.  The staff was always immediately resistant when said I wanted to go with my sweetie.  When I told them he had dementia they changed their tune and rolled out the red carpet.  If I let my sweetie answer the health questions they would have discharged him before the surgery because he would say he was just fine!

Telling everyone that LO has dementia - you won't believe how many show up to ask questions while in pre-op.  The techs, the nurses, the anesthesia resident, the surgical this or that, on and on and NONE knows about the dementia because they only know about their concern.  Do not assume they have read the chart or know anything about your LO.  That's why it is important to go in and stay until they actually role him to the surgery suite.

If you cannot say LO has dementia in front of him then write up index cards and hand them to each of the staff that show up.  I had even considered writing with a magic marker on my sweeties forehead!

On one anesthesia report it was noted that my sweetie had delerium and was hard to wake up in post op. Every surgery after that I told them about this and it seemed that he had better emergences and cognitive response after the surgery.  So I think if you tell them that your LO has had similar experience then they can adjust the anesthesia to try to minimize from happening.

What I learned is that the anesthesia concoction can be adjusted and modified.  It's not one recipe fits all.  Our LOs are an anesthesiologist challenge and since they make such big bucks and charge so much make them work for it!!!

Also, try to get all LOs surgical records including the anesthesia report.  I did that and after one surgery where my sweetie was much more alert and oriented to time and place, I gave that report to each subseuqent anesthesiologist.  Who knows what they thought or did but at least they knew my sweetie was not their usual patient.

I'm EOAD, I chose to have cataract surgery a few months ago (no general anesthesia). I figured I'd better do it while I still had my wits about me. My elderly father's AD is a lot further along. He has severe, frequent hip pain and there is little that can be done at this point to relieve his pain. His age and severity of AD is such that he would be ineligible for any type of major surgery. That ship has sailed.

I figure my AD is going to progress whether I get surgery or not. Since I'm not good with pain and realize the surgery may not be an option in the future, I think I'd choose to have the knees done.

Identify and weigh the pros and cons. Then choose. Best of luck.

Thank you everyone for your good and valuable responses.  I totally agree that he should never be left in the hospital alone.  I am always with him (or anyone I care about) when they are in the hospital after a mistake by nurses in the hospital, almost killed our son when he was just 2.

I also always go to all doctor’s appointments with my husband, because he often gets details etc confused, and it’s just all better if I am there.

I agree we need to weigh the pros and cons of surgery vs. living with the pain.   The spine surgery , being 10 hours concerns me a lot.  That is a long time to be under.  The knee surgery might be less time, and possibly can be done with a spinal block.  For now, I guess we will try the epidural injections in the back.  The injections in the knee did not help.  Epidural injections in the spine helped many years ago when just one disc was involved, but he eventually had the surgery twice.  This time every single disc in the back is involved, so we will see.

I just wish at least one of the doctors would give a more definite opinion about the risks of the anesthesia for those with Alzheimers or another form of dementia.    There has to be some data out there, and they have to have a definite opinion beyond what they are saying.

Sometimes I feel now that he has the definite diagnosis of EOAD, we are kind of on our own, and the specialists really can’t and won’t be doing much to help, other than prescribing the Aricept , and eventually the Numenda.  I’m not really sure why we need to keep traveling to the memory clinic at UVA.  Perhaps the primary care doctor here can manage things just as well.   Our last visit was basically a chat with the doctor.  It was a long day of travel, and we took away nothing valuable from the visit.

Sorry for rambling!  Thanks for all of the helpful info and shared experiences.

Good luck to all!

SBL83 

Susan, I agree. Until there is a meaningful treatment there is nothing they can do, and it is a waste of effort and time. All we need is to get our prescriptions filled, for drugs that only give us a little more time of cognition. We are getting all of the specialist treatment up in GTown, but only because Ray is in a trial. Once over, we will revert to just a PCP. 

And I would absolutely be concerned about having someone with EOAD under for 10 hours. If it were my husband, I would say no way. But mine is progressing fairly rapidly, and if you are seeing a much slower progression, and expect many more years, then that could be an entirely different story for you. 

I hope you are well. It's nice to see you here again. Hope you had a wonderful holiday and have a Happy New Year. 

Another consideration is that the hospital stay is likely to cause a decline that may or may nor be reversed and someone will have to be with him 24/7 there and in rehab.

My husband was able to find a PT who worked long hours with him and surgery was avoided,

I have just started to think about this topic as I took my mom for a colonoscopy this week and she was put under for only about 30 min. It was never mentioned to me as a concern and I thought of it in the waiting room. My mom is 69 with early onset Alz. She was diagnosed almost 3 yrs ago. She doesn't drive and doesn't cook when we are not home as she has forgotten food in the oven on numerous occasions. She is still aware enough to make her own decisions, have normal discussions, (albeit with some questions being asked multiple times,) and although she does live with us, she can stay home alone during the day, still, while we are at work. 

She has a bad left hip, however, and the Orthopedic surgeon we saw this week says shes 6 months to 1 1/2 yrs away from needing her hip replaced. Factors depending on how the hip progresses and responds to her current diet and losing weight, and just the normal progression of the hip.  I am concerned about the anesthesia but at the same time, her hip is getting bad enough that she wants to be able to enjoy whatever time she has left with her family and her hip is getting in the way with that. She already uses a cane, and there has been talk of getting a wheelchair for some of the occasions when she would need to be on her feet for awhile, (family zoo trips, museums, etc.) She is adamant that she not miss out on things because of her hip and wants to have it replaced. She does not want to be wheelchair bound permanently, however.

I am ok with it as she is still early on in the disease and if there is a slight decline, she will still be fairly aware and able to keep living her life, as she puts it. Am I naive to think that the benefits would outweigh the risk?  I just want her to be able to enjoy the time she has left, (and at this point, she still has a few good years ahead of her,)  and not miss out on things she wants to do. 

I'm just trying to outweigh the risk with the benefit as she is still at the early onset stage of Alz, a 2, maybe 3 in some scenarios. She is still only on the Aricept and has not yet progressed to Namenda. She still only sees her Neurologist once every 6 months for checkups as well as he feels she is still doing well enough to not have to see her more often. 

Kebertowski,

I don't want to be a fearmonger here, but my mother suffered intense and rapid decline after anesthesia. She had, unbeknownst to be, a several years old diagnosis of MCI, and it had certainly progressed. But after the surgery, it was as if she never "came down" from the anesthesia. Much of her already compromised speech ability had declined sharply, and her ability to follow conversations diminished, causing her tremendous pain and frustration. The change was drastic, astounding--and, horribly, permanent  

The elderly are supposed to have a mental eval before surgery involving anesthesia; the Mayo Clinic doctor was negligent in not doing so. 

I have seen Mayo spitting out articles cliaming there is no connection between anesthesia and worsening dementia--to say I see them as liars covering their backsides is the mildest. How many people will read those articles and decide it is safe?  But as long as the surgeons bring in the money..