Expert: Mary Gordon - 9/15/2010

Question
I have been caring for my mother in my home and she has just entered the end stage of Alzheimers and is currently enrolled in hospice in the home. When she was still cognitive and before my father passed away she signed a living will for no drastic measures to be taken to prolong life. Now I realize feeding someone is not a drastic measure but a necessity. However, my mother wil refuse food for the majority of the day. How far do I go to feed her? Do I force feed her with a spoon or will I be doing more harm? I find that when she is hungry she will grab food off her plate and eat it. I only prepare what I KNOW she will like. I try to coax her to eat the food but to no avail sometimes.

Any advice you can offer will help me rest at night.
Thank you for being so kind and generous in sharing your expertise.

Beth

Answer
Hi Beth, all you can do is what you are doing. Don't try to force feed her. You don't want to turn eating into a negative battle field.  

Loss of appetite and weight loss are a routine part of many dementias. Food looses its taste (they often lose their sense of smell early in the illness), and they also have a lot of trouble chewing and swallowing. Quite often, their feelings of hunger or thirst seem to be impaired.

A good plan of attack is to make every mouthful count. If she will only eat small amounts, give her more frequent meals, of high calorie, high nutrient foods. You can even hide extra calories by enriching foods with butter or cream, or other fats.  

Some people will eat more in the morning than in the rest of the day, so sometimes throwing out ideas about traditional breakfast foods in favor of something richer may be a plan (if she'll eat rich custards, ice creams, puddings, or dinner foods, go for it!).

Usually the advise is to avoid all distractions. Feed her in a very quiet spot where she can concentrate on eating and keep the atmosphere very low key and relaxed. It might help if she sees you eating as well. Avoid visual clutter on the table and plate. If she is still able to feed himself, one food at a time on the plate can help. Believe it or not there are several credible studies that show that people with dementia will eat more on a plain brightly colored plate, than on a pastel plate or one with a pattern on it. The belief is that the bright color makes the food more visible to them. Too much food on a plate can also be overwhelming.

If she can still feed herself concentrate on finger foods she can easily get into herself, and let her eat them any way she can.

Smaller, more frequent meals might help a lot. I'd also avoid a lot of juice because it's sugary and it can kill the appetite for more nutritious fare.

She may qualify for an assessment for coordination problems with chewing and swallowing. It's a common problem later in dementia called "dysphagia", and the evaluation is usually done by a speech pathologist. If she is evaluated, that might give you some real help with ideas as to what to feed her and in what textures. She may need purees and thickened liquids, and to avoid mixed textures, like crunchy bits in a liquid.

As I'm sure you've tried - there are drinks like Boost, Gain and Ensure that can augment nutrition and add calories. You can try some of those if she might take them as a snack or drink after a meal.

Eventually, she will need careful hand feeding because she will not be able to feed herself.

I know this is very frustrating. It takes a lot of time and patience to get food into them - and hopefully you are getting some assistance from the hospice program. Eventually, no matter what you do, her weight will begin to spiral down. However, if she is still attempting to feed herself sometimes, she isn't there yet.

What we found was that when my mother in law was in her last weeks, she almost completely lost interest in food. It was as though she didn't feel hunger or thirst, or if she did, she didn't understand what they meant or what food or drink had to do with them.  It was as though eating and drinking was both exhausting and annoying. She just didn't understand what it was all about or why she should do it. She would push your hand away and refuse to open her mouth. Still, we did continue to try many times a day.

Hope this helps. I'm thinking of you. All you can do is your best, and put your guilt away. This isn't your fault - it's this horrible disease. I hope you are getting good support and some respite care from the hospice program to give you a break. This stage is an exhausting marathon for the caregiver - uphill through the rocks and prickle bushes. Be kind to yourself.

Mary G.