Dementia Patient needing pacemaker

78-year old mother-in-law has dementia; severe short-term memory issues. Good physical health; she suffered heart attack at age 49 with bypass surgery. No major events in past 29 years. On routine trip to her cardiologist, doctor decides she needs a pacemaker. My wife and I are questioning whether this is the right option to pursue at this stage. We're consulting with regular physician for an additional opinion. Anyone have a similar encounter they might share?

Hi, Soninlaw:

Sorry I didn't reply before now.

As I care for patients receiving pacemakers every working day, I would agree with your questioning. It is a quality of life issue that truly has to be made - most likely by you. There comes a time where the question needs to be asked to what end? This may not be that time for her (or for you). But, it is a question that needs to be asked.

My dad has dementia (among other conditions). He's more confused all the time. In my opinion, I don't think a pacemaker would be in his best interest. That's just me.

Best of luck and prayers to each of you!

Mike Davis

I am in the same boat. It is not definate yet ( Dr is doing another test) but thinks my dad will need a pacer. He is 85 with dementia. Another Dr feels he can not make his own medical decision. I am not too sure. What's next?

This subject has recurred several times. Probably we should post an article on it. As I said to son-in-law there are so many things where it comes down to personal choices, values, and the facts of an individual situation. Had my dad been offered an opportunity to have a pacemaker six months ago, I think (think being the operative word) that I would have felt that he should not get one, even though it may have bought him another month or year. Indeed, what kind of month or year would it have been? As of last week, he's gone. It's a good thing really, though hard.A life of incontinence, personal care done by strangers (or loved ones who have become strangers) would not have been a life for him.

Ultimately, no one knows what is best in these circumstances better than those who love this people purely and want the absolute best for him her.

As to making a decision, don't let doctors bully you or your loved one into a spot. They rarely know what's best for a loved one in these circumstances.

How do we make decisions like these? Gain the most information you can about the loved one's condition (the dementia AND the heart illness), the prognosis of both illnesses with and without treatment, the possible side-effects of the treatments, and the effects of the one illness on the other with the treatment.

For instance, if the dementia is worsening (or is projected to worsen), the pacemaker make take the natural course of the dementia and put it on steroids. The agitation that often attends dementia may only be made heightened and prolonged by the addition of a better functioning heart. Would this abide well with a loved one's values? The answer may be yes. I'm not one to say. But, would that heightening of the agitation and fears make your (your speaking rhetorically) loved one's life better or worse?

It's late and I've slept hardly at all the past several days so this may not make any sense at all. I sincerely do hope it helps. We will say prayers for all who have asked similar kinds of questions in the past several days.

My father died two months ago at the age of 85, after struggling for 7 and a half years with the after-effects of a couple of large and many small strokes. For the first few years, he was semi-independent and could think, go for walks and to the local pool on his own. Without thinking it through, my mother and I (who both had medical power of attorney) agreed to the insertion of a pacemaker about two years in so that he could get through a hernia operation.
We regretted this very much during the last two years of his life, as his vascular dementia increased and he could no longer complete the simplest task, such as putting on his shoes, by himself. We feel we interfered with the natural course of his dying. There is often a relationship between the health of the heart and the health of the brain. Prolonging the survival of the heart when you can do nothing to promote the health of the brain was, in my opinion, a mistake.
He stayed home, and my mother's life, and his, was difficult beyond imagining. We learned only towards the end that the pacemaker had a TEN YEAR BATTERY LIFE! Not only that, but the surgeon who inserted the pacemaker would not cooperate at all when we asked to have it turned off. (This can be done ethically, legally and practically, but not all doctors, understandably, feel comfortable doing it.)
We think that as a result his last years were painful and prolonged. He finally died on a wonderful hospice unit of pneumonia. It was hard to watch. There is a possibility that without a pacemaker he could have died more quickly. A friend of mine is presently grieving the prolonged death of her mother, at age 87, following open heart surgery and the insertion of a pacemaker. In this case, however, she had all her marbles before the surgery. I recommend thinking this process through very carefully. Part of the problem is that Medicare reimburses doctors far better for surgery than it does for the painstaking emotional and physical care required to make these decisions with wisdom. Thank God my mother had a sympathetic General Physician.
I am also a writer and interested in hearing directly from people who are experiencing this dilemma.

Dear poster, I would be interested in hearing how this worked out. My father was given a pacemaker in similar circumstances, and we later regretted it. Did you go ahead with surgery in the end, and how did things work out?
all best, Katy Butler

The device allows patients who live far from a major hospital to receive care from a cardiologist.Doctors keep tabs on their patients,who only need to come to hospital if something serious goes wrong.
One of the most common problems is a lead that needs adjustment on the pacemaker, or a low battery.These types of problems can be adjusted from afar.

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Three things:

First, you are correct. It is possible for a cardiologist to review the pacemaker functioning from a distant location. This applies, as well, to Internal Cardiac Defibrillators (ICDs). It is likewise true that when these devices have problems,it is sometimes due to a low battery or, rarely, a bad lead. It is possible to interrogate the device from a distance. I don't think it would be wise to make changes from a distance because if the heart rhythm starts to have problems there's no one there to treat the arrhythmia (unless it's interrogated from a local doctor's office).

But, with all due respect, that was not what this discussion was about. It was about the value of implanting a pacemaker in a person with dementia.

Finally, we do not allow postings of links - especially to Canadian pharmacies - on this web site. We call this forum spam. The link has been altered.

Thanks for the education on pacemakers. They are amazing devices and getting better all the time.

P.S. We have nothing against pharmacies in Canada (or anywhere else for that matter).

My friend Ralph lives alone - He just turned 85 years old will he need physical therapy after the surgury

My mom is 89 and had a pacemaker put in about 3 years ago while my dad was still alive. She was well into Alzheimer's at that time. For the last two weeks she has been in the hospital with a dramatic loss in functioning in which she is now asleep virtually all of the time, only waking for a few seconds at a time and keeping her eyes shut. This is also how she is when we feed her. Doctors think she probably has viral meningitis. The pacemaker is an issue which many in my family cannot even discuss. One thing is certain to me. When placing a pacemaker, conversations need to occur regarding the intent in using the device. I believe that when my father decided that my mother should get the pacemaker, he was only intending to prolong "good years" in her life. I don't think he was saying, "We'll get you a few more good years and that will probably be followed by several really bad years until the battery wears out."

Thanks for your post, Daughter. Your suggestions are very wise. These kinds of discussions need to occur and fully hashed out: What are the benefits of a treatment? The burdens? Are we really only prolonging the long-term misery of dementia for the patient? If there are good years, how many can we really expect? And how "good" will they be? If there are bad years that will follow, how bad will they be and how long? Are we doing this for ourselves or really, truly for our loved one? I think each person has to answer these kinds of questions for himself/herself. At the same time, we owe it to our families to be clearer about our own expectations for our care so they get an idea about the kinds of values that inform our choices.

Thanks again for a great post...

I have read your article an I have the same problem. My Grandfather has a pacer and has had it for about 3 yrs. now he is in later stages of dementia. Is it legal to have it unhooked. His is pulling 99% and all he does is sits and stares.

Dear Jodie:

Defibrillators and pacemakers can be turned off for compassionate purposes.

At our hospital in Texas, we do this a couple of times a year when the patient and/or family have decided that the device is undesirably prolonging life. There is nothing unethical about this if it is what the patient wants, or would want, if he/she is competent.

You should discuss this with your cardiologist. The procedure is easily done.

Certainly, the person choosing to do this must have the legal standing to make this choice. But, it is not in violation of any law and, if my father had been using a pacemaker in the latter days of his life and I had possessed Medical Power of Attorney, I would almost certainly have made that choice.

I hope this helps. Please repost if you have any further questions.

I wish you and your grandfather well...

Mike Davis

OMG,I would NEVER have let the doctors bully me had I had known what a horrible life my mother would have. my mother was 84 and was dyeing a natural death due to heart falure. She could not go to the bathroom ,bath herself ,see ,was a diabetic ,wheelchair bound,and had dementia.....WHY would any DR put a pacemaker into a woman who said NO!!!!!!! I was so used to hospice with my dad I just thought they would listen to her.....but no...they were on her ,and I being the only child became afraid of others judgement....her living will made not a differance,they did not consider a pacemaker "extraordinary means" wow..... she never thought this would happen,she has since been taken advantage of by a caretaker who robbed her,had 3 strokes ,is bed ridden we are broke for caregiving,emotionaly broken as well ,and I am always feeling judged. What ever happened ton a natural death in our country. Medicare wonders why they are broke?: give me a break!!!!! nto the DR who asked me "dont you want your mother to have a pacemaker?at 84 with my father gone.......I wish I would have had the guts to sayNO let her go be with God......because our lives have all been a living hell ,especially hers ........I want that DR to see her on Haldol 3 times a day because she is paranoid....... this is not my mom..... the medical field needs to get a grip...we are the first genaration to face keeping people alive at all costs.....even if it causes you to lose your dignaty,grace.life savings and your mental health.....Thanks alot.......wait until you are put in our position. no body want to see their parent like this.

My father in law is 85 with Parkinsons and short term memory loss. He uses a wheelchair. Will the pacemaker that was put in him today cause his memory to be worse than it already is? So, you are saying, unless he dies from pneumonia he is guaranteed to stay alive like this for ten more years?

I think I am going to change my Living Will and put my own wishes specifically regarding a pacemaker.

Thanks for all of the "Pacemaker" posts- looks like
I'll need to do some deep thinking, and broach this topic with my Health Care Proxies, and include some language in my Advanced Directive.

Good luck everyone.

Thanks for sharing all your stories. Today we were faced with the doctor wanting to put a pacemaker in my 80 year old father who has Alzheimer's. At this time, he cannot walk, feed himself and gets agitated easy. His heart has started to race and then slow way down. He doesn't feel it and you wouldn't know it was happening if he wasn't hooked up to a monitor. Putting a pacemaker will not slow down his disease nor does it sound like it will improve his life or my mother's who is is major caregiver. It will just prolong his lack of quality of life. It's a hard decision but I know this isn't quality life and why prolong the misery.