Expert: Mary Gordon - 11/24/2009

Question
My mother is 85 and has had Alzheimer's for five years. When I took her to a memory care facility two years ago, she weighed 135 pounds. She now weighs 115 pounds. She loves to eat but keeps losing weight. She is on several anti-depressant meds, and diabetic meds. She is so frail and her arms and legs look like someone beat her up even though I don't think that has happened. What is wrong with her or am I just not realizing this is normal? She is also being prescribed 2000 mg. of Tylenol per day along with a GERD med. Is this dangerous? I never get to see the doctor and I know that he doesn't want to see me because of all the questions I have. Should I switch doctors? I am worried.  

Answer
Hi Nancy, the care facility should be concerned. She's lost 15% of her body weight over that two year period.

It IS common for people with Alzheimer's to lose weight as the illness progresses. This is from a variety of things - they lose their sense of smell, and thus a lot of their sense of taste, and food can become unappealing. Their fine coordination starts to go, making it difficult to use utensils and feed themselves. They start to lose the muscular coordination necessary to chew and swallow - this often requires food to be made available in forms they can handle (i.e. soft foods, liquids that are thickened). They can start to lose any understanding of what feelings of hunger or thirst mean - or what food is for - or forget they have eaten or need to eat. They can become very distractible - noise, tension, activity around them can stop them from eating - or even a couple of foods on one plate can confuse and distract them. They can start to take a very long time to eat on their own, or even to be hand fed.

When my mother in law was at your mom's stage, the Alzheimer's unit stopped taking her down to the dining hall. She was too distracted by the noise and bustle to eat much. She also tended to answer yes to any question asked in certain tones - so if the wait staff asked her "Mrs. Bertram are you finished with your plate?" she would say yes, even if she wasn't. When they started feeding her alone on the ward at a card table, she actually ate much more. It seemed sad to see her sitting her by herself, but it was the only way to get calories into her. She had to be by herself, sitting quietly, concentrating on eating, and have lots of extra time. On the other hand, some people do better when they are in a setting where they SEE other people eating - it prompts them to do so themselves.

The facility should be calling in the dietician to see what can be done to boost her caloric intake. If she is interested in food and still able to feed herself, they should be working out a strategy to keep weight on her. Higher calorie foods (i.e. even by adding extra fats to food such as cream, butter etc.) can help. They can try feeding her more frequent meals and snacks - sometimes smaller meals more often will do it. Have they tried supplements after meals (like Boost, Gain, Ensure). They should monitor what she needs in terms of food textures. How well can she use utensils? Are they offering ways to get food into her (i.e. finger foods, soups she could drink from a cup - or even, hand feeding, which eventually becomes necessary for most people). How much juice do they give her? It's little better than sugar water and a real appetite killer. Does she wear dentures? Are they still fitting properly?

If they haven't broached the subject, ask for a full review and assessment to figure out how to keep weight on her. The doctor should be involved to help rule out medical causes, such as thyroid problems etc. A review of her medicines is also a good idea - the weight loss may be a side effect of some medication or combination of medications. They need to develop an overall strategy for her, including diet, texture, utensils, setting, method of feeding etc. It may be worth getting a speech pathologist to assess her for dysphagia, which are the chewing and swallowing problems that happen as the dementia advances (believe it or not, speech pathologists are the specialists who do the assessments!).

Here is a good article
http://www.aafp.org/afp/20020215/640.html

What is all the tylenol for? That seems like a lot of tylenol to be taking on a sustained basis for one frail old lady who likely has diminished renal and hepatic function. Have other pain control medications or strategies been considered? I think it is important for your own peace of mind that your mother have a doctor you can talk to, and who will answer your questions. I'd book a specific appointment with him to go over the current situation - where she's at in the bigger picture, and what can be done to keep her as comfortable, content, and healthy as possible. What are the overall goals for her health management? Are there potential issues you might want to discuss now, such as preferences if she does develop a health crisis. Does she still need all the medications she is on?  It is always worth reviewing goals of treatment on at least an annual basis. I would say the weight loss is relatively significant, so it does need discussion. What does he see ahead for the next year? If he is not willing to sit down with you at least once or twice a year, I'd say, yes, time for a new doctor. Your mother's entire situation is upsetting enough - you need a doctor who is on your team, and at least willing to talk to you, so you understand what is going on, and are comfortable with all of it.

Hope this helps.

Mary G.