“The 36-Hour Day” – excerpts on swallowing, tube feeding, and end of life care

This post may be of interest to dementia caregivers.

There’s a terrific book for dementia caregivers titled “The 36-Hour Day.”  I highly recommend this book for all dementia caregivers, whether it’s Alzheimer’s or a non-AD dementia.

Here are some excerpts on swallowing, malnutrition, weight loss, choking, feeding tubes, dehydration, and end-of-life decisions from that book.


Not Swallowing
Sometimes a person will carry food around in his mouth but not swallow it. This is due to forgetting how to chew or swallow. This is an apraxia and is best handled by giving the person soft foods that do not require much chewing.

People with dementia can easily become malnourished, even when their caregivers are doing the best they can.

Weight Loss
People with dementia lose weight for all the same reasons that any other person does. Therefore, if he loses weight and is not on a diet, the first step is to consult the person’s physician. Weight loss often indicates a treatable problem or a disease unrelated to the dementia. Do not assume that it signals a decline. It is important that the physician search carefully for any contributory illness. Is the person constipated? Has the person had a new small stroke? Is the person depressed? Depression can account for weight loss even in a person who has a dementia. Poorly fitting dentures or sore teeth or gums often contribute to weight loss. Weight loss very late in the illness may be part of the disease process itself. Certainly all other possible causes should be considered.

Sometimes people with dementing illnesses have difficulty coordinating the act of swallowing and choke on their food. If the person has difficulty changing his facial expression…he may also have trouble swallowing.

When to Consider Tube Feeding
People with dementia stop eating for many reasons. They may have difficulty swallowing due to apraxia, ulcers in the esophagus, esophageal obstruction (narrowing), or overmedication. They may dislike the food being offered, not recognize it as food, lose the sense of feeling hungry or thirsty, or be sitting in an uncomfortable position. People with dementia may stop eating when they are experiencing a concurrent illness; they may resume eating when they recover. Even severely impaired people may have a depression that causes them to stop eating. However, some people reach a point in their illness when they are no longer able to eat or swallow.

It is helpful if you can talk about this issue [of a feeding tube] before it arises or as soon as the person begins to have difficulty swallowing or significant weight loss. It is important to discuss all aspects of the decision to place a feeding tube with a physician who knows the person well.

Most experts agree that dehydration itself somehow diminishes or abolishes the experience of thirst and hunger, but we cannot be sure this is true. While knowledge gained from people dying from other causes may not apply to people with dementia, cognitively normal individuals who have recovered from severe hydration do not report feelings of discomforting thirst.

What Kind of Care Can Be Given at the End of Life?
When a person has a chronic, terminal illness, the person’s family must often make decisions about when to allow treatment and when to accept the declining course of the illness. There are few right or wrong answers, and there are many things that are not understood about the last stages of life. The questions that families often face include whether to hospitalize a person, use tubes to feed a person who has stopped eating or markedly limit their food and fluid intake, or treat concurrent illnesses with antibiotics or surgery.

As you make these decisions, be cautious about accepting dogmatic opinions from “experts.” Like the rest of us, professionals can easily confuse personal values with fact in this emotional-laden area.

Neither you nor the doctors may be able to say whether an intervention will help or will be distressing to a person with dementia who is close to death.

Ask your physician how likely it is that the person will return to some previous level (that of a week ago or a month ago, for instance). Is it likely that the person’s death will be delayed by hours, days, or months by the proposed intervention? What are the available alternatives? Are there any other interventions that might be less distressing?

It can be difficult for family members to discuss these painful issues. Some people may refuse to talk about them; others may become angry. Some feel that it is wrong to “plan” for a death. However, talking things over often relieves feelings of anxiety and dread as death approaches and allows for clear and direct communication with the medical team. Without this, the family’s control over the last days of the person’s life can be limited. If there are disagreements among family members, show this section [of the book] to your family members and ask the physician, social worker, or clergyperson to help coordinate a family discussion. Suggest that family members not bring up old disagreements but focus on this issue.

The death of the ill person, even after so long an illness, may be painful, and the practical tasks surrounding the death are distasteful to many of us. Still, arranging a gentle and dignified death is one way you can give love and care to the ill person, and it will allow you to grieve in the way that is right for you without intrusions from strangers.