Late Stage Dementia and Eating Problems

Watching my mother begin to fade from lack of eating solids, I began to wonder what might be going on.  It’s not necessarily that she ain’t hungry - she drinks coffee and juice well, and she loves her shakes, but solids - not so much.  Someone mentioned using a meal replacement type drink - such as Ensure - but those really don’t have enough calories; the protein shake has just as many vitamins and minerals, as well as other nutrients and more calories, but it still isn’t enough.  

When prompted to eat some solids (other than yogurt, which she eats and then doesn’t) Mom has no interest and she simply won’t.  There are times I feel as though I should shake some sense into her, but it really wouldn’t do much good.

Then, it dawned on me - I’d heard something about this before.  Perhaps it was that as folks begin to decline they begin to dismiss foods on a regular basis.  So, I did some digging.  According to the Alzheimers.org.uk End-of-Life-Care page, this is typical with people suffering from dementia.  In fact, there is an entire page dedicated to some of the problems, with links to tips to help those who are caring for patients who are finding it difficult to chew, eat, swallow, or even find food palatable.

(If you’ve questions, please refer to the links at the bottom of the article)

The following is from the www.alz.org page on Late Stage Caregiving:

One of the most important daily caregiving tasks during late-stage Alzheimer's is monitoring eating. As a person becomes less active, he or she will require less food. But, a person in this stage of the disease also may forget to eat or lose his or her appetite. Adding sugar to food and serving favorite foods may encourage eating; the doctor may even suggest supplements between meals to add calories if weight loss is a problem.

To help the person in late-stage Alzheimer's stay nourished, allow plenty of time for eating and try these tips:

• Make sure the person is in a comfortable, upright position.
• To aid digestion, keep the person upright for 30 minutes after eating.
• Adapt foods if swallowing is a problem.
• Choose soft foods that can be chewed and swallowed easily. Make liquids thicker by adding cornstarch, unflavored gelatin or food thickeners (available at pharmacy and health care supply stores) to water, juice, milk, broth and soup. Learn the Heimlich in case of an emergency.
• Encourage self-feeding.
• Sometimes a person needs cues to get started. Begin by putting food on a spoon, gently putting his or her hand on the spoon, and guiding it to the person's mouth. Serve finger foods if the person has difficulty using utensils.
• Assist the person with feeding, if needed.
• Alternate small bites with fluids. You may need to remind the person to chew or swallow. Make sure all food and fluid is swallowed before continuing on with the next bite.
• Encourage fluids.
• Because the sense of thirst diminishes in the late stages of Alzheimer's, the person may not realize that he or she is thirsty. Encourage the person to drink liquids or to eat foods with high liquid content, such as watermelon, peaches, pears or sherbet.
• Monitor weight.
• While weight loss during the end of life is to be expected, it also may be a sign of inadequate nutrition, another illness or medication side effects. See the doctor to have weight loss evaluated.

Unfortunately, with Mater, we aren’t able to gauge her weight but for watching her clothes begin to drape and swallow her as she consumes fewer and fewer calories.  The wonderful aspect is that her attitude is cheery and she is more alert than she has been for some time.  

There is also the possibility that the fat in our bodies is a wonderful storage tank of toxins, and the more fat we lose the better we feel as our system cleanses itself; could this be what Mom’s brain is tasking her to do?  I’m not sure. 

Then, I read the article on Infections, Eating Problems Signal The End in Advanced Dementia, which isn’t very much a merry-making article from where I sit.  These such incidents, as with Mom, signal the oncoming finality of it all - although there is no real timeline (there rarely is).  

I also happened upon this article that was inserted in a Quora Digest article, it comes from the Social Care Institute for Excellence in the UK:

It may seem that the person is being starved or dehydrated to death when, in fact, they are not. In the end stages of dementia (that is, in the last few months or weeks of life), the person’s food and fluid intake tends to decrease slowly over time. The body adjusts to this slowing down process and the reduced intake. It is thought that by this stage the hunger and thirst part of the brain has now stopped functioning for most people.

The person may be immobile and so not need the same amount of calories to sustain their energy levels. Having reduced food and fluid intake and decreased interest in this can be thought of as a ‘natural part’ of end of life and dying.

Giving increased food and fluids artificially to a person who has been having a reduced intake can be harmful.

This is all so interesting.  The article goes further to state:

But Is the Person Suffering?

This is the most common concern for both family and carers, who are often unaware of why the person is having difficulty swallowing or does not want to eat or drink anymore. Explain to the family why this is occurring: that is, most people now think that a person with advanced dementia takes less and less food and fluid towards the end of life and their body adjusts so that they do not feel hungry or thirsty, and, therefore, they are not suffering. Family may think the situation is due to poor care, but a good explanation should help them understand and feel reassured.

Should the person continue with food and fluids by mouth?

Yes. People who can eat and drink – even if it is only spoonfuls of pureed food or sips of fluid – should be encouraged to do so. However, do this only if the person does not cough or choke. The person must be able to take food and fluids safely (see the ‘Chewing and swallowing problems’ feature in the ‘Eating well’ section).

So, while I worry about her wasting away, I also know there are forces at work over which we have no control.  We never really did have much control over that woman, anyhow, but I suppose it has more to do with watching her fade with grace that is truly difficult and bittersweet.

"End-of-life care - Alzheimer's Society." 2014. 16 Mar. 2016 <https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2709>

"Eating and drinking - Alzheimer's Society." 2011. 16 Mar. 2016 <https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=149>

"Late-Stage Caregiving | Caregiver Center | Alzheimer's ..." 2012. 16 Mar. 2016 <https://www.alz.org/care/alzheimers-late-end-stage-caregiving.asp>

"Infections, Eating Problems Signal The End in Advanced ..." 2009. 16 Mar. 2016 <http://www.medpagetoday.com/Geriatrics/AlzheimersDisease/16439>

"Why do end-stage dementia patients stop eating? - Quora." 2014. 16 Mar. 2016 <https://www.quora.com/Why-do-end-stage-dementia-patients-stop-eating>