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End-Stage Alzheimer's Requires Good Decisions

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It's common for patients in the final stages of Alzheimer's disease to be admitted to a nursing home. However, despite having advanced illness and being very dependent, the natural history of these patients remains unclear.

Until recently, there has been no clear consensus on the course of the illness, factors leading to death and quality of life after admittance to a long-term care facility. But new research could help families and caregivers better understand the path of advanced Alzheimer's disease.

In a recent study published in the New England Journal of Medicine, researchers followed 323 patients with advanced dementia who were recently admitted to a nursing home. After 18 months, more than half of the patients had died from pneumonia, swallowing difficulties or other febrile illnesses. This research clearly shows that advanced Alzheimer's disease is indeed a terminal illness and life expectancy is no longer than for a patient with severe heart failure, terminal cancer or a major stroke.

Although having a very poor prognosis, a substantial number of the patients were transferred to a hospital or an intensive care unit to treat pneumonia or to commence artificial feeding via a feeding tube. Unfortunately, few, if any, of the family members were aware of the poor prognosis, and most believed that life expectancy was likely to be much longer.

There was little discussion of palliative care and end-of-life choices. Ultimately, research clearly shows that hospitalizations were futile. It did not improve quality of life, may have caused needless suffering and definitely did not prolong life.

This research shows that end-stage Alzheimer's disease is associated with a great deal of disability and a very poor life expectancy. When a patient with Alzheimer's disease no longer recognizes family members, is unable to care for himself, has difficulty walking and eating, and cannot maintain continence, his prognosis is poor. As such, it is vitally important that family members understand how the illness progresses, what is considered "normal" and how to assure the smoothest transition from life to death.

For many older adults with advanced memory loss, the end of life comes with an inability to eat, which results in weight loss and a decline in the immune system.

Though often difficult to understand, these changes alone do not cause needless suffering. For family members, simply understanding that not eating is the norm can provide a great amount of comfort as they enter the end stages of the disease.

Gradual weight loss is often accompanied by fatigue. The patient may have difficulty swallowing, which leads to an accumulation of mucus in the back of the throat that becomes a natural site for bacterial overgrowth and potential infection. This in turn causes more drowsiness, perhaps some confusion and almost always dehydration.

The patient becomes somnolent and can slowly slip into a coma. Without any artificial intervention, death almost always comes peacefully, at the accepted time, in a quite spiritual environment with the patient surrounded by reminiscing, loving and usually grateful family.

For anyone personally touched by Alzheimer's disease, it's extremely important to understand every phase of the illness. Battling Alzheimer's disease is a long, slow and often difficult challenge.

Early on, the illness can be maintained, sacrifices can be made, and your loved one can live many wonderful years after diagnosis. But once the advanced symptoms set in, you must understand the inevitability of death. In doing so, it becomes possible to avoid unnecessary therapy in a heartless, mechanical intensive care unit full of ventilators, cardiac monitors and artificial tubing. Simply with more understanding, the family and the physician can develop the best possible approach to comfort and end of-life care.

While families must be educated about the difficult road of end-stage Alzheimer's disease, the physician must play an important role in making the goals of care rational and realistic. American medicine has seen so many great advances that what was once impossible is now within reach, and physicians can help stave off death longer than ever before.

But, sadly, for patients with no good prognosis — for patients with end-stage Alzheimer's disease — there are far better choices to guarantee comfort and assure that the final hours are filled with peace, love and dignity.

Dr. David Lipschitz is the author of the book "Breaking the Rules of Aging." To find out more about Dr. David Lipschitz and read features by other Creators Syndicate writers and cartoonists, visit the Creators Syndicate Web page at www.creators.com. More information is available at www.DrDavidHealth.com.

COPYRIGHT 2009 CREATORS.COM


Comments

2 Comments | Post Comment
What is the best recommendation for the amount of time a spouse should be available when their mate
is admitted to a vetrans home for dimentia/alzheimers. every day or every 3-4 days?
Comment: #1
Posted by: Tammie Smith
Wed Mar 14, 2012 1:27 PM
Our mom is living with us as her home burned down and she is in the advance stages of Alzheimer. Last night she went into a state of deep sleep sitting at the dinner table and stayed like that for an hour or more. I thought she was dying but when we sang songs to her and rubed her arms she came around. I know she was hearing me as she commented when I got her in bed that she sould of wrote notes down as she has been doing her toileting. I wonder what I should do to keep her comfortabe and at home as if she continues to get worse I know we want her to dye at home?
Comment: #2
Posted by: BARBARA MCABEE
Thu Aug 2, 2012 10:19 AM
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