Expert: Mary Gordon - 4/12/2010

Question
My 88 year old mother-in-law was diagnosed almost 9 years ago with Alzheimers.  She is now in a nursing home and seems to be sliding rapidly lately.  She is able to walk with assistance and is still mostly continent.  The last couple of weeks she has started having difficulty swallowing and even refusing at times to eat.  She has lost ten pounds in the last two weeks with 8 of those in the last week. Is it possible that she is in the end stage while still being able to walk and is not bedridden?  She answers yes to very question she is asked and sometimes says intelligble words but doesn't have a large vocabulary any more.  She doesn't seem to be progressing as others I have read about so I am confused if she is in end stage.  Should we ask the nursing home not to try to force her to eat?  What is ahead?

Answer
Hi Deidra, couple of questions for you - what and how are they feeding her? Are they expecting her to feed herself? Is she being fed in a noisy busy place? Are they rushing her? Have they had a speech pathologist in to assess her for dysphagia? Have they had a dietician review what she is being given to see if there are ways to up her caloric intake? What kind of texture does the food she is being given have? Has a doctor seen her to make sure no other health concern is brewing?

She isn't in the end stage of the dementia itself, but can certainly spiral down to the end from lack of nutrition. It is very common for people in the later stages to develop troubles with chewing and swallowing. They can't manipulate food in their mouths. They start to have trouble with textured food. Thin liquids can choke them. They can aspirate food and drink into their lungs. She may be very distractible. She may not be able to handle utensils. She may be refusing to eat because its becoming frightening due to the choking. Is she chipmunking (keeping food in her mouth and not swallowing)?

She needs a proper assessment before you decide next steps.

Right now, if she's not eating much, the first strategy is to make every bite count. If she will only eat small quantities, then try to make everything she eats high calorie and high nutrient. Think about drinks like ensure, boost and gain. Think about soft textured purrees, puddings and custards and ice cream. If she eats better in the morning, consider ditching traditional breakfast foods for something with more calories.

Avoid giving her juices between meals, since sugary drinks can kill appetite. Consider adding butter and other fats to the things she eats. If you find something she likes and will eat, let her have it as much as she wants.  Make sure she is being spoon fed in a quiet relaxed environment so there are no stressors or distractions.  

Ask your doctor about getting her assessed for dysphagia (if you haven't already done so) and for suggestions about appropriate diet. She may be at the stage where she will do better with creamy textured foods, and thickened liquids. There are many good products out there to help.

Although this article is on a Huntington's page, it has many good tips for dealing with dysphagia from any cause, including dementias such as Alzheimer's. http://huntingtondisease.tripod.com/swallowing/id5.html

Hope this helps.

Mary G.