Expert: Mary Gordon - 6/15/2010

Question
Hi Mary,
It's been a little while since I've written.  My 94 year old aunt has late stage Alzheimer's and lives in a nursing home.  I have been visiting her weekly and have tried to visit around meal time.  During my last visit, the residents were outside in the park behind the center.  My aunt was "just there", oblivious to her surroundings. I noticed that she had an empty cup in her hand, looked at it occasionally, tried to drink from it.  I asked her if she was thirsty, and she looked at me blankly.  I got her some cool water which she was able to sip, however, I noticed that she kind of held it in her mouth for about 30 seconds before swallowing.  I noticed she did it a couple of times and then kind of lost interest in the drink.  Is this normal or am I reading into this.  Could this indicate that she may start having the same problem with food?  I was there last week and had to feed her.  I noticed that she opened her mouth only slightly, but would open more if I told her to.  I don't like the idea of a feeding tube since she is 94.  Am I overreacting??

Answer
Hi Ellen - your aunt is going to develop problems with chewing and swallowing, but she is also going to lose interest in food and drink as her dementia progresses. It is as though they don't know what the sensations of hunger or thirst mean or what they should do about them - or perhaps they don't even feel them. It doesn't seem to distress them in any way, so you can't think about this in the same way as you would with a healthy person. It appears to be part of the normal process at the end of life. Their metabolism slows down, they lose their muscle mass - it's like the winding down of a clock.

Families become very distressed when a loved one starts to eat or drink less and less despite careful handfeeding and prompting. Our instincts tell us to provide nutrition to people who are ill. Food is symbolic of life and of love and of caring. But when a person is reaching reaches the final stages of dementia, the body stops being able to metabolize food properly, and eating can actually make their stomachs feel sick. They lose their sense of smell and taste, and food has no appeal. Combine that with difficulties in chewing and swallowing, and the fact they may not have any idea why they should do this bothersome activity, and you can understand why they become disinterested. This is an expected progression, usually seen in the final stages of almost all dementias. Ultimately, the person may prefer only liquids, and then nothing at all - which is what happened with my own mother in law. When the person is nearing the end of life, allowing him or her to refuse food is one of the hardest decisions facing families and clinicians, but it is the kindest thing we can do.

It can be emotionally tempting to consider tubes, but you really have to think carefully about what you are hoping to achieve before going down that road. There is no real evidence to suggest that artifical hydration or nutrition prevents suffering or extends life in dementia patients. Your aunt would have to be restrained from pulling out tubes. Most nursing homes won't use nasogastric tubes because of the continued risk of aspiration and the tearing of the inside of the nose and thoat. The other choice is a PEG (percutaneous endoscopic gastrostomy) tube, which is surgically implanted. Most people have never seen a nasogastric tube or a PEG tube, but it’s critical to understand the risks and potential discomforts for the patient before deciding on this course of action. Here is some good information
http://www.sciencedaily.com/releases/2009/04/090415170609.htm
http://www.healthinaging.org/public_education/pef/tube_feeding.php

Whatever method the family decides on, one thing is for sure: once artificial feeding has been started, it is more emotionally stressful to withdraw it — for both families and health care workers.

In our family, we made the decision for careful hand feeding. However, as is the norm, my mother in law began to take in less and less with time, no matter how much coaxing we tried, or what strategies were employed to get more into her (such as small frequent meals, high calorie foods etc.) She did not seem the slightest bit distressed by lack of food or drink. Mostly she was bothered by our persistence and would push our hands away!  We decided to keep her comfortable and out of pain, and let nature take its course. We did continue to offer food and drink by mouth, but she wasn't interested. We don't regret at all the decision we made. What we were seeing was the natural winding down of her body. She was very peaceful and relaxed and did not seem to suffer at all.

Hope this helps. It is a very difficult thing to grapple with. My vote is for not allowing artificial interventions unless they are for a short time and the person is expected to recover and be able to eat again on their own, such as might be the case after a stroke. That is only my perspective and you know your aunt and her preferences and specific circumstances better than anyone.

Wishing you peace with whatever you chose.

Mary G.