Expert: Mary Gordon - 6/23/2011

Question
At last a website, you, that is informative & helps, thank you so much.
Friend,patient aged 56 had stroke due to hereditary high cholesterol which killed her father & his brother at that age.  No treatment given, we live Mexico.  Patient & husbband don't have medical insurance here or USA, ignored cause till too late, social system useless, husband in denial, 20 years older and increasingly indecisive,language problems.  Patient fell in March 2011,no treatment other than local GP kept wound clean, she able to walk ok, transpires has fracture top of tibia and impacted knee.  Different surgeons different opinons regarding surgery, asap or wait, repair or total prosthesis.  Major complication: - she is walking on this and has NO pain.  Presumed due to Alzheimer's, approx stage 5 - 6.  Question:as no pain, assume risk & leave alone?  Concerned anasthetic effect.  There are no care givers options available here, no insurance USA.
All help much appreciated, God bless you.

Answer
Hi Veronica,

There are a couple of factors to consider. People in mid to later dementia are very fragile in terms of cognition. The stress alone of a hospital stay can be very difficult for them - as you know, they generally don't do well with changes to routine and surroundings, as they cannot adapt. Hospitals also don't know how to deal with dementia patients at all.

The second time my mother in law broke her hip, she was in mid dementia, and we found that family had to be with her in hospital almost all the time, or she would not be adequately cared for. Staff did not seem to understand how mentally impaired she was, much less know anything about dementia and they assumed she was much more capable than she was. They would shout instructions and explanations at her as though she was deaf, when the truth was, she just couldn't understand what was being said to her or follow directions. They couldn't deal with her incontinence, they didn't feed her properly or even monitor that she was eating anything - if family had not been there to hand feed her and supervise meals, she would have starved. They couldn't keep her safe and secure, and couldn't deal with her confusion and incontinence.

As you are probably aware, general anesthesia whacks dementia patients in a very serious way. They will experience a delirium in the aftermath - an exceptional period of increased confusion, which they may recover from in the weeks following surgery. More seriously, many experience a permanent loss in cognition - i.e. it is though their disease has progressed overnight, and they never get back to where they were before the surgery. It is so common, it has a name - Post Operative Cognitive Dysfunction (POCD). Add to this the stress and pain of the surgery and its aftermath, and the effects of pain medication, and it can be devastating.

The first time my mother in law broke a hip, she was in early Alzheimer's. She had been living on her own, doing her own shopping, cooking and cleaning, and quite capable with some supports of living an independent life, which included managing money, making social visits, getting herself to appointments. Post surgery, she was so confused, the hospital refused to believe us when we told them how she'd been prior to the operation. They thought we were in denial, and wanted her to go directly to a nursing home. They called in a social worker to argue with us. Now, she did recover somewhat that time, but never, ever to the level of functioning she'd been in before the surgery.

The second surgery, in later AD, was totally devastating to her cognition. Part of the challenge is that as they become more impaired, they can't really grasp what is happening to them or why. So, post surgery, when you are trying to get them back on their feet, they can't really cooperate with therapies to rehabilitate them. Even a few days in bed makes them go downhill. They get weak and wobbly and their balance gets more and more impaired. Physiotherapy hurts and is difficult work and they can't understand what it's for. They can't look ahead and think to themselves that there will be a benefit over time - that whole thought process is too abstract. So therapy seems like pointless torture and they have no idea why you are trying to get them to do it.

We tried EVERYTHING with my mother in law to get her walking again after the second hip break. The first break, she could still understand what we were trying to do, and thus she was a willing participant in her own recovery. She could see the gains she was making and understand that the pain would subside. Second time, no dice. Her hip was healed. Her legs still worked. However, she would get terrified and distressed everytime we got her on her feet or tried to get her to do the exercises. She would scream and clutch at us, even with two gentle people walking on either side of her fully supporting her so there was no chance of a fall. After weeks of trying with nurses and physiotherapists and family members, we had to give up. She never walked again, and the other consequence of not walking was that she became completely incontinent at the same time.

Now, with broken hips, we really had no choice but to try surgery, because she was in terrible pain from the broken bones.

My personal take with dementia patients is that unless it is affecting their quality of life, I'd leave it alone. Her knee doesn't seem to bother her, and she is still able to walk. I'd leave it be, since the "cure" may be much worse in terms of quality of life than her disability.

I actually apply the same logic even to life threatening illness in a dementia patient. The dementia itself is a terminal illness, so you have to think long and hard about what you are trying to achieve when you treat medical problems, particularly those that are not causing active pain or distress. So for example, if your friend developed cancer, you'd have to have a long think about whether or not it would be in her best interests to try and "cure" the cancer, if it meant a huge amount of suffering, and maybe a longer life with less quality.

In other words, even with the knee, is it worth putting her through scary, invasive, painful and confusing tests, procedures and treatments - you have to do a cost benefit allowance of weighing the real risks and what she will suffer, vs. what the hoped for benefits will be, and how likely you are to achieve those benefits. With the knee, besides what could happen to her from the surgery itself, you have to consider the caregiving consequences. The surgery could plunge her husband into crisis, as he may not be prepared to look after her if she ends up more confused and possibly unable to walk. The patient's peace, happiness and comfort have to be the first priority. If it's not hurting her, I would just watch and wait.

So, my 2 cents for what it's worth. Just keep in mind that a lot of orthopedic surgeons are like carpenters. They want to fix the joint, but they aren't necessarily looking at the bigger picture of what is best for the whole person and their family.

Mary