Eating Problems Forecast End in Nursing Home Elderly with Dementia
Sure, I realize that Uncle Art has totally lost contact with the reality he formerly knew. And, I know he’s never going to get his mind back. But I don’t think of Uncle Art as dying, just because he can’t remember who I am.
He IS dying, according to authors of the recently published “Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life (CASCADE)” study.(1) And, the authors say, the sooner family members and decision makers understand that advanced dementia is a TERMINAL ILLNESS, the sooner they can start to focus on providing the suffering elderly patient a more comfortable end-of-life experience.
The CASCADE study defined advanced dementia as:
- being confined to bed,
- being completely dependent on others, and
- being unable to speak more that 5 words;
- loss of bowel and bladder control, and
- loss of memory to the point of not recognizing family members.
In the study, researchers followed 323 advanced dementia residents in 22 nursing homes for 18 months. During that time, better than half of the residents studied died (177 residents, or 54.8%).
The data showed three markers indicating the end of life was approaching:
- inability to eat
- developing an infection
Among the nursing home residents in the study, eating problems were seen most often (85.8%), followed by fever (52.6%) and pneumonia (41.1%).
The statistics revealed that the number of residents most likely to die within 6 months of:
- becoming ill with pneumonia was 46.7%
- developing fever was 44.5%
- developing eating problems was 38.6%
The largest group of residents, those who had developed eating problems, was the group least likely to die. This is not the good news it, at first glance, appears to be. The CASCADE study shows, in fact, that eating difficulties foreshadow imminent decline.
An elderly person’s dietary intake is the most important factor affecting length of life. Without adequate nutrition, cells weaken structurally, and can’t make the energy needed to function properly. Generalized cell deterioration and death taxes the immune system. To make matters worse, even the white blood cells are weak from the malnutrition. Still, they put forth their best effort to clean up the damage throughout the body. The natural result of widespread white cell activity is an increase in the body’s core temperature: A fever.
With all the white blood cells busy clearing the body of cell debris, few are available to fight bacteria, fungus, and other microorganisms. Infection sets in. The most common infection in the elderly population is pneumonia. The already overwhelmed white blood cells, normally responsible for destroying microorganisms, cannot adequately defend against the invading bacteria.
The usual course is to treat the infection with antibiotics, which need to be administered directly into the blood to be quickly effective. However, the initiating cause of all this trouble–an inadequate dietary intake–must be corrected so the body’s cells stop dying of malnutrition. At this point, it becomes necessary to insert a feeding tube, through which liquid nutrition can be passed into the person’s stomach.
If caught in time, the person may recover from the infection and fever in a week. It takes time to rebuild a strong force of white blood cells, that now have clean up to do from the malnutrition and infection. But, the truth is they never do quite catch up. Rare is the nursing home resident who returns from the hospital as well as he was before his illness.
So, the stage is set for a relapse. Any challenge the white blood cells now face–a cold, a bedsore, a fall, another infection, a bad reaction to medication–will quickly send the resident’s weakened system spiraling downward again. With each subsequent illness, the odds of recovering decrease. Even when recovery does occur, however, the former quality of life never does.
The authors of the CASCADE study point out that difficulties eating, fever, or infection precipitated a turn for the worse in the study participants, and nothing could prevent this decline. In the final analysis, medical interventions (inserting IVs and feeding tubes, antibiotic therapy, et cetera) did not improve the residents’ chances of surviving; they simply prolonged the person’s suffering.
Also, residents in the study experienced the same type and degree of discomforts seen in cancer patients near the end of their lives, according to the authors.
Family members and decision makers tend to accept a cancer patient’s poor prognosis; the goal becomes one of making her last days comfortable. Unfortunately, the authors noted, decision makers for dementia patients tend to fight the inevitable to the end, causing distress to themselves and pain for the patient (from medical treatments and inadequate pain management). So, despite all the heroic efforts, the course and outcome of severe dementia is ultimately identical to that of cancer.
First: If it’s not too late, determine the wishes and concerns of your loved one about his or her care through the end. There’s nothing more agonizing than having the duty to make end-of-life decisions on another’s behalf, without knowing how he feels or what he wants.
Second: If you have an elderly loved one, make sure he/she has an adequate nutrient intake. This requires not only having enough high quality food available, but the ability and desire to eat it. No fast-food, please. Whenever possible, bring home-cooked meals to the nursing home, of a consistency they can safely eat. If your elderly loved one’s dietary intake begins to falter, realize the time to deal with the inevitable is drawing nigh. Start planning accordingly.
Next: Heroic medical interventions are painful. Your need to not say goodbye means pointless suffering by your loved one. What’s more, doctors and nurses tend to withhold pain medicine from anyone who does not display symptoms of pain, which most patients with severe dementia cannot do. If your elderly person needs medical intervention, speak directly to her doctors and get their assurance that he will receive the same quality pain management as the person who can communicate discomfort.
Finally: The CASCADE study proved severe dementia IS a terminal illness, and patients afflicted with it need comfort more than they benefit from aggressive, painful and futile medical interventions. Once we understand and accept this, medical care can focus on helping advanced dementia patients experience a more comfortable, peaceful passing.
The CASCADE study was funded by the National Institutes of Health.
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(1)Mitchell SL, Sachs GA. Dying from dementia. N Engl J Med. 2009;361:1529–1538, 1595–1596.