Expert: Mary Gordon - 4/28/2008

Question
My husband started showing signs of Alzheimers at the age of 55. He is now 60 this year, and is in a nursing home. He no longer recognizes me, and now has trouble eating solid food. He only weighs 135 lbs, and keeps loosing weight. It hurts to see his rapid decline during this past year. Is there anything I can do to help him. How long can a person survive after they stop eating, and lose so much weight. Thanks for your help.

Answer
Hi Evelyn, you must be absolutely heart broken. It's miserably unfair in someone so young.

Has the nursing home had an assessment done on his eating issues? Although they can lose their appetite from the disease - and part of that is a loss of sense of smell, so everything is as appealing as cardboard - often there are other factors at work.

For example, many people in later Alzheimer's develop dysphagia - problems manipulating food in their mouths, and in chewing and swallowing. It makes eating solid textured foods difficult. It also makes foods with mixed textures a problem, such as a solid with a liquid like cereal and milk. Often they do better with soft foods with a consistent texture such as purees, and thickened liquids. Have they tried enriched drinks like Ensure, Boost or Gain as snacks?

Have they considered feeding him separately from other residents? My mother in law found the dining room distracting and overwhelming. She did much better when they gave her meals alone on the ward, where it was quiet and she was calmer. She also would eat more if things were very relaxed and she was given more time.  She did best with more frequent, smaller meals. She would not eat much at a single setting, but if they fed her every two hours, instead of every four or five, overall, she took in more calories.

If he 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.

I'd also throw out all the rules about what should be eaten at any particular meal. If he will eat most at breakfast, then make sure he is getting custards or puddings or whatever high nutrient and high calorie food they can get into him. No one says he has to have toast and cereal for breakfast. The same goes for other meals. At this point, dietary restrictions are less important than keeping weight on - so whatever he likes, whatever he will eat, its worth a try. If he loves ice cream, I'd be letting him have it! Extra calories can also be hidden with creams and butter added to foods or sauces.

My mother in law got to the point where she did better with careful hand feeding. It was as though she got tired of feeding herself, and would give up.

Having said all that, we tried everything, and all we were really able to accomplish was to slow down her weight loss. That is certainly worth doing, particularly since weight loss makes them so weak, and can lead to all kinds of health problems and discomforts, like feeling cold.

I know this is not what you want to hear, but people can linger in the later stages for some time. His weight loss certainly means he will be more frail and susceptible to all kinds of life threatening complications (i.e. he will have limited reserves to fight an infection, for example). My mother in law lived two years in the last stage. At the end, she started refusing to eat, and died about 6 or 8 weeks later.

It was a long grind. Your husband, being younger, will be overall healthier than many of the very elderly who reach the later stage of Alzheimer's.

Have you thought through what you would do if he had a health crisis? What kind of thing would you want treated - and to what extent?  Would you want him rescusitated, taken to hospital, given tubes and IVs, oxygen, other medications? If he developed a cancer or other life threatening illness, would you want it treated beyond pain medication? At what point, would you consider palliative care (i.e. hospice). These are all things to consider, difficult and painful as they are.

A good idea is to talk to the nursing home about having a care conference, where you meet with staff and his doctor and talk frankly about his situation, and about the weight loss. Talk to them about what strategies they have considered and tried, and what the next steps are. They should have a plan for getting maximal calories and nutrition into him, and a dietician should have been consulted. They should be tracking his weight, and tracking his food and fluid intake - how much, under what circumstances, what times of day. Ask the doctor about what he or she can suggest, and what they see the coming months bringing. You will feel better if you all can come up a concrete plan of action.

If you have thought about end of life issues, this would be a good opportunity to talk about his wishes and yours, and what the"norm" at the nursing home is. Do they have a hospice option, and at what point does it get considered? It is not an easy talk to have, but it may take a load of your shoulders, having an idea of what they think is do-able, and what the options may be.  

I really feel for you. Not sure if this has helped. I wish there were more concrete answers for you. I know you are hurting and feel helpless when you see him failing.

Mary G.