Expert: Mary Gordon - 1/19/2009

Question
QUESTION: My Dad has recently been diagnosed (by 2 neurologists) with Lewy Body Dementia.  At the same time we have found out he needs out heart surgery for 2 valve replacements and triple bypass.  The neurologist suggests Dad not have the surgery because it will make his dementia symptoms worse and the Cardiologist thinks it will make Dad better due to increased blood flow to the brain.  Dad wants the surgery but the family isn't sure he fully understands his dementia and are hesitant to talk to him about it.  Which doctor should we believe?  Should we honor Dads request for surgery?

ANSWER: Hi Val,

I know this is very difficult, and its also very hard to wrap your head around what is going to happen to your father, surgery or no surgery.

My perspective is that of a person who has been through a dementia journey with a loved one, so I do have a bias, and this is just my opinion - so I'll blether on, and you can take away from this whatever is useful to you, and leave the rest.

You know now your father has a fatal, incurable, progressive dementia. You are going to lose him by inches and the journey will be brutal, relentless and heart breaking. There is no pretty end to dementia. The final stage (should he survive to experience it) is pretty much a family's worst nightmare come true.

So right now, is what you've got. Today, he is as with it mentally as he will ever be - this is as good as it gets, and it gets worse, much worse. Right now he's still himself. He's still the man you know and cherish. But if you look ahead, the road goes down hill. He will be deconstructed intellectually, emotionally and physically by his advancing neurological damage.

Having been through this with my robustly healthy mother in law, I can tell you, there were days in the later stages of her Alzheimer's that we fervently wished she'd had some other health issue other than her advancing dementia that might mercifully carry her off. And the day will come when your dad will be a shell of who he was, and you will endlessly grieve the loss, although he is still living. Like us, you may even pray for a gentle and swift end, and feel guilty for even thinking the thought.

There is a lot of controversy about bypass surgery - there is very limited evidence that it prolongs life or even really improves quality of life. Here is a 2007 editorial on the surgery by a respected US cardiologist that really covers what is open to debate  http://www.drcranton.com/chelation/cabg1.htm

So, the question is, what are you hoping to achieve - and what the odds that you will get what you are after? What might you be trading?

The odds are very good, as his neurologist has told you - that he will very likely respond to the anesthesia and surgery with an acute   confusional state (i.e. a delirium) and/or a precipitous drop in functional   abilities   which may or may not be permanent. Obviously, for open heart surgery, you don't have the option of a spinal or regional block that can be used instead of general anesthesia - an approach that is often recommended for people with Lewy Body because those methods   are less likely to result in postoperative   confusion. This is where your neurologist is coming from - he knows your father's life is limited in both quantity and quality - and for everyone's sake, he is suggesting that preserving your father cognitively for as long as possible should be of higher priority than attempting to prolong his life.  

You have to see what general anesthesia can do to cognitive function in a person with a progressive dementia  to appreciate it. My mother in law had some hip surgery early in her dementia - in fact, her formal diagnosis with Alzheimer's was delayed as we dealt with her hip. Before surgery, she was coping very well, looking after herself and her apartment, shopping, cleaning, driving. Her only real issues were some short term memory deficits. Post surgery, she was shockingly changed - completely loopy. The hospital thought we were lying about how she had been prior to surgery, and wanted her to be immediately placed in a locked dementia ward. They even brought a social worker to talk to us about our denial. The change in her was radical. Now, she did come back a ways, very, very slowly, over the following months, but never close to where she had been cognitively prior to the surgery. So, she did experience a very pronounced short term delirium and a marked and permanent drop in cognitive function. With her hip, we couldn't avoid the surgical option - she was in pain and couldn't walk.

The post surgery syndrome is so common even in non-demented healthy elderly it even has a name - it gets referred to as POCD - Post Operative Cognitive Dysfunction. The rates sky rocket after heart surgery in particular, and no one really knows why.  People like your dad, with Lewy Body dementia are particularly vulnerable, probably because of their sensitivity to medications.

So...if it were my dad, my personal inclination would be in favor of listening to the  neurologist. The cardiologist is a surgeon, so if you want to look at it this way - he's a mechanic, a plumber, a carpenter. He's not the computer specialist. He fixes the pump, he's happy, and he won't be faced with bringing home a person who looks like dad, but who may be dramatically changed from the inside for the worse. You are also very likely to find many health care professionals know very little about dementias - if you've done your homework about Lewy Body, you may be amazed at how poor the advice you are given can be. Hospitals are not equipped to deal with dementia patients, post surgery or any cause of hospitalization. They can't deal with the behaviors and special needs, and will look to quick fixes like meds - which Lewy Body patients are so exquisitely sensitive to.  

As you probably know, in people with Lewy Body Disease, the treatments for hallucinations, delusions and behavioral disturbance tend to make the Parkinson's symptoms worse; and treating the Parkinson’s symptoms can make the delusions and behavior problems worse. If anyone who doesn't understand Lewy Body is prescribing for him, he can be in trouble.

I would also agree with you that your father may not be the best person to make this decision for himself. He may not have the cognitive ability to really assess his situation, or the impacts on the family if he declines more rapidly mentally than necessary. He also may lack self insight (i.e. he may not be able to see his own deficits). Honestly, I would not get into discussing this with him, or trying to explain things to him. You will get him upset, and he may not understand fully what is being said to him. The upset lasts long after the memory of WHY he's upset has faded.

It comes down to respecting not the wish for surgery, but the underlying reason he wanted it. He wants a good quality of life. He can't really appreciate that the surgery may take that away from him (he may have a healthier heart, but that may not mean much to him or anyone around him if he's no longer himself). Or it might buy more time at a cost that is more than he bargained for. Longer life isn't necessarily the be all and end all. What's the expression - its the life in our years, not the years in our life.

So, my two cents, and take it for what it's worth. Not an easy choice for any family. I'm thinking of you - I know this is all really painful and distressing, so I'm hoping my being as upfront and straight with you hasn't come across as too direct.   

Mary G.


---------- FOLLOW-UP ----------

QUESTION: Mary, what should we do when Dad talks about having heart surgery?  I struggle with this because I want to be honest however I don't want to upset him.  

Also, how will his dementia symptoms progress over time?  We want to know what to expect.  

Thank you

Answer
Hi Val

A good book you might want to buy is called the 36 Hour Day by Mace and Rabin, 4th Edition. Its in softback, it's inexpensive, and its full of good insights and tips for dealing with loved one's with dementia.
http://www.amazon.com/36-Hour-Day-Alzheimer-Disease-Dementias/dp/0801885094/ref=

When you think about opening a conversation with a person with dementia over something that might be controversial, you have to ask yourself why you want to discuss the subject with them.  Are you looking to your dad for his buy in, his approval or validation for a course of action ? Do you need his validation for what your gut tells you you need to do?

He's been an authority figure all your life, but now you and other family members have to make decisions for him, and it requires a major shift in perspective. Even if your reasoning and logic are impeccable and perfectly argued, he may never agree with you, any more than he may agree with future decisions regarding driving, the necessity for supervision, hired assistance, a potential move, or any of the other changes he faces. He may not understand the implications of any option. given that his ability to reason, his judgement, his emotional control are all impacted.   

My advice is to try to not to start discussions with him on the subject. If he does bring it up, rather than argue with him,  I would try to deal with the subtext of his thinking - with the feelings and meaning beneath his words.  Ask yourself why he wanted the surgery. The answer is...because he's afraid of what is happening to him, of illness, disability and death. Deal with that fear.  I would reassure him. I would be positive and upbeat, and make sure he knows that you love him, and everyone wants the same thing - for him to be as healthy and happy as possible. It not a lie to say that you'll do what the doctor recommends - and not be specific about which doctor (or get the family doctor on board with your decision and get him to deliver a consistent message).

If he gets "stuck" on asking about dates for surgery, I wouldn't be above telling him a fib (they're renovating the hospital), or being very vague (in a few months when you are stronger) and then changing the subject. Let him know you all want the best for him.   Use touch and affection, pat, sooth, comfort, reassure - and distract and divert. Get his attention onto something else, preferably something with a physical component, like a walk, feeding the birds, looking at photos, so his attention is focussed on something new. It helps to maintain your sense of humor whenever possible - you will need it. When things got rough with my mother in law, if I made a little joke, it often broke the tension. She'd start to giggle, we'd share a grin, and we could get onto something else.

Avoid trying to convince him he's wrong about anything (i.e. correcting, arguing). When you are talking to him, be careful with your tone, body language, facial expressions. Even if he can't follow your words, he will pick up on your tension in your non-verbal cues, and that will add fuel to the fire.  

This article describes the experience of dementia. Although it is specifically about Alzheimer's, your father's experiences will be similar. http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement

Going forward, you are going to find that he will have his own reality, and there is no point to directly challenge him - and forget about long explanations. Being rational with someone who has lost their rationality is frustrating, exhausting and futile. You end up being the enemy trying to thwart what he knows is right. It gets you nowhere but toe to toe with a person with a damaged brain, who is upset on top of everything else - and the emotions will linger long after he can recall WHY he was upset.

We learned early in the game to find ways around confrontation with my mother in law.

Hope this helps

Mary G.