Uninformed relatives responsible for the care of advanced Alzheimer patients often seek overly aggressive treatments, and doctors treating frail elderly with kidney failure should be wary of using dialysis, according to two studies reported Wednesday.

In the Alzheimer's study, families who knew to expect fever, pneumonia and eating difficulties tended not to push for aggressive treatments and were more likely to focus on making the patient comfortable, said the team led by Dr. Susan Mitchell of the Hebrew SeniorLife Institute for Aging Research in Boston.

There's unnecessary suffering because there's probably inadequate counseling of families about what to expect as the patient progresses, and also inadequate palliative care when the patient has distressing symptoms, Mitchell said in a telephone interview.

The study, reported in the New England Journal of Medicine, followed 323 residents of 22 nursing homes to see which complications are most common. All had profound memory deficits. They couldn't recognize their family members. They spoke fewer than six words, were bed-bound, were totally dependent and were totally incontinent, she said.

Over 18 months, 41 percent developed pneumonia, 53 percent experienced fever and 86 percent had an eating problem. Nearly 55 percent died during the study.

Uninformed relatives were more likely to insist that loved ones get aggressive interventions such a feeding tube or a trip to the hospital for antibiotic treatment.


If you sit down and counsel families so that they understood the prognosis and had a better sense of the clinical course, the patients were far less likely to undergo these burdensome interventions, said Mitchell.

Dementia is a terminal illness and we have to be better at providing high-quality palliative care for the many, many Americans who are dying of this disease.

Alzheimer's affects more than 5 million Americans and that number is expected to grow to more than 13 million by 2050.

In the dialysis study, also reported in the New England Journal of Medicine, researchers found that the ability of frail nursing home patients to perform basic functions such as walking, bathing, dressing and using the toilet declined in most people, even with the expensive treatment.

In addition, the procedure often seemed to hasten death, said Dr. Manjula Kurella Tamura of the Stanford University School of Medicine in Palo Alto, California, and colleagues.

Kidney failure may be a reflection of terminal multiorgan dysfunction rather than a primary cause of functional decline, and thus the initiation of dialysis may not rescue patients from an inevitable decline, they wrote in their paper.

Dialysis uses a machine to filter impurities from a patient's blood, and is cumbersome and time-consuming. The alternative is to use drugs to alleviate symptoms.

In a commentary, Dr. Robert Arnold of the University of Pittsburgh School of Medicine and Dr. Mark Zeidel of Beth Israel Deaconess Medical Center in Boston said doctors need a better understanding of when to initiate dialysis in older patients.