Expert: Mary Gordon - 10/25/2009

Question
QUESTION: Hi my mom has Alzheimer in a severe stage. What concerns me, is the fact that she is losing weight very fast. She cant eat by herself anymore, and get pulverized food

ANSWER: Hi Henrieta,

It's very common for a person with late stage Alzheimers to begin to lose weight steadily.  As you probably know, they lose the coordination needed to properly chew and swallow regular food, and to be able to feed themselves. Pureed foods and thickened liquids can help with the problems they have chewing and swallowing (which are called dysphagia). Patient feeding by hand, spoonful by spoonful, and holding a cup to their lips is really the only alternative once the person can't handle utensils and feed themselves. It can be very time consuming, but it is the best method. You might be tempted by the idea of tube feeding, but there is a lot of research on the subject, and there is no evidence that tube feeding improves their health, keeps weight on better, prolongs their life or reduces their suffering.

Another thing that seems to happen to people in later Alzheimer's is that they lose their interest in food. Some of this is because they literally lose their sense of smell and thus most of their sense of taste. Nothing is going to taste or smell good to them, and there isn't much you can do about that - not much will seem appetizing.  They also don't seem to feel hunger or thirst like a health person does. They often really seem to have no interest in food - or no idea why they should eat it. It is as though they don't have the physical sensations of needing food or drink, or if they do feel these things, they don't know what the feelings mean. They certainly don't seem to relate the activity of eating or drinking to quelling their hunger or thirst. I know with my mother in law, it was as though she had no idea what food was for.  It just seemed like people trying to feed her were just a bother to her - she seemed not to realize that food was something she needed, or should want or take any pleasure in.

A couple of other thoughts -it can help to increase the number of times a day she is fed - many small meals may be more effective than fewer larger ones.  She may tire easily, so getting a little into her many times a day, might mean she gets more calories in total than having marathon feeding sessions. Feeding her alone in a quiet place can help, if she is getting distracted in any way. Hopefully, if she is being fed by aides and staff, they know enough not to ask her verbal questions about whether or not she has had enough, since she may or may not be really able to understand or answer, and they may take the food away too soon. My mother in law could not be taken to the dining room, since she was distracted by the noise and commotion and would end up eating much more if they sat with her and her tray away from the bustle.
 
Watch her carefully - if there are particular times of the day when she will eat more, then use those times to get the most into her possible. Some people are most receptive in the mornings when they are rested and relaxed. Throw out traditional ideas of what she "should" have for particular meals like breakfast. There is no reason she can't have "dinner" foods for breakfast if that is the time she will eat the most. You can also let her have high calorie custards or puddings or ice cream rather than traditional breakfast or lunch foods. The whole goal is to get as much nutrition into her as possible, and if there is something she likes and will eat, let her have it.

I would avoid giving her much juice, since they are little better than some sugar water, and can kill the appetite for more substantial foods.  You can also add fats to food to increase the calories, so if she only eats a little, at least she will get as many calories as possible - examples include adding butter or cream or cheeses to foods. I would also be offering her fortified liquid supplements like Boost and Ensure between meals. You want every bite and swallow to count.

I know this is very difficult. It really is a sign she may be entering into her final months. All you can do is your best. Don't beat yourself up too much. I know you love her and want the best care for her possible. There may not be much you can do to keep weight on her beyond trying these ideas. It seems to be a part of the natural progression of the disease, although it is very frustrating and saddening.

Hope this helps a bit.

Mary

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

QUESTION: Thanks for your response. The fact with my mom is, every time I go to visit her, and give her something to eat, then she really eat like someone who is very hungry. She still have a good appetite. Every bit of food I give her, she finish. I did asked the owner of the place if she gets enough food to eat. On which she reply that she sometimes gets 2 plates of food to eat. When I give her something to drink, she does'nt breath in between, until it is finish. U know, I looked after her for 6 months, and know  every detail of her likes and dislikes. But I really think since she is in that place, she is deteriorating very fast, and I feel so guilty. There is nothing left of her body. That is why I want to know if the quick weightloss is part of the illness. And I can promis you she still have a very good appetite. She even chew the spoon that I feed her with, when the food is finsh. She is in that place for 5 month and have lost about 15 kilos, if not more. The owner tells me that it is due to muscle loss in the body. She cant even sit on her back, because there is no flesh. I want to get my information together, before I confront them

Answer
Hi Henrietta, sounds like you do have some very valid concerns. If she has hunger and will eat, and is losing weight like that, either they are not taking the time to hand feed her, or are cutting her off too soon - or she has some medical issue causing her weight loss, such a thyroid problem. She has lost a huge amount of weight in a very short period of time, and the home should be doing something immediately.

You are quite correct that their explanation is complete junk - this kind of weight loss is NOT from inactivity. It is because she is not getting enough calories and her body is consuming itself trying to stay alive. I would be very alarmed, just as you are.

I don't know what your options are, but given the seriousness of the weight loss in a relatively brief time line, I wouldn't give them much time to address this. She needs to see a doctor to see if there is any medical complication contributing to the weight loss. My inclination would be to speak to the facility as you plan - if you don't see immediate concern and action, I would shop for a new a place for her.  If she passes away as a consequence of not being properly cared for, you will feel very guilty and distressed. So - if you sense they are not taking this seriously and immediately doing everything in their power to address it, get her out of there, for your own peace of mind. If you start to get a lot of excuses from them rather than genuine concern, I would report them to the licensing authorities where you live.

An appropriate response from them would be to have a dietician review what she is currently eating, and come up with a plan that can be put into place fast - i.e. you should expect them to be able to tell you exactly what the detailed plan is (and a professional place will have a written plan) - and it should include strategies to get more calories into her, such as smaller and more frequent meals, more snacks, higher calorie foods, high calorie supplement drinks between meals etc. If they are taking this seriously, they will also have records of her weight and will know exactly what she weighed when she came in and what she weighs now.

How well trained are the staff? Do they really know how to feed someone in her condition? Are there enough staff to accomplish hand feeding?Do they know enough to keep trying for an extended time, and not rely on anything she says or does? I mention the last one, because when my mother in laws speech became impaired, if you asked her a question, even if she didn't understand what you were asking, she would often answer with a yes or no. I'm guessing she answered automatically based on the tone of your voice, rather than having any idea what you were saying. When she was in hospital at one point, the hospital staff were TERRIBLE. They would zoom into her room and ask her if she was finished with her tray, and if she said yes or said nothing, they would take it away even if she hadn't eaten anything - and they wouldn't bother to report to the head nurse how much she had eaten, so the head nurse would have had no idea that my mother in law hadn't eating enough all day.

No matter what the response, find another place right now - at least have your alternative lined up so if the current place gives you no satisfaction, or continue to make excuses or refuse to come up with some serious plans, you can immediately move your mother.

Mary G.