Physicians determine new guidelines are needed to care for patients with dementia

In a “Special Communication” in the June 28 issue of the Journal of the American Medical Association, two University physicians and a colleague use a catastrophic and unanticipated complication of routine medical care to alert physicians that for patients with dementia, every clinical decision requires extensive consideration.

In their paper, they also argue that as long as patients with dementia are excluded from clinical trials of therapies for common age-related diseases, such as osteoporosis or arthritis, physicians will have insufficient data to make evidence-based recommendations for this rapidly growing group.

“When therapy involves a patient with dementia, the established equations balancing the benefits and burdens of treatment no longer add up,” said Dr. Daniel Brauner, Associate Professor in Clinical Medicine and first author of the article.

“Besides the usual risk-benefit analysis, physicians need to consider a patientâs ability to comprehend, remember and follow directions, and to recognize and report problems. Treatment choices should also take into account the capacity of each patientâs caregivers to listen, understand and act.“

The physicians wrote about a catastrophe that involved a woman in her 80s with mild Alzheimerâs-type dementia, who visited a doctor for back pain from a vertebral fracture. Her physician prescribed an osteoporosis medication. Because the drug can irritate the esophagus, patients are told to take it with a cup of water and to sit upright after swallowing it.

Four weeks after starting therapy, the patient was brought to an emergency room for shortness of breath. Her evaluation showed severe damage to her esophagus, presumably caused by the medication. Ulceration had caused rupture of the esophagus and eventual erosion into a major vessel, which led to her death.

Cases like this “raise important questions about the safety of this and other commonly used agents in patients with dementia,” noted the authors. “These drugs have not been systematically tested in this population,” said Brauner.

Alzheimer-type dementia is a common chronic disorder, becoming even more prevalent as the population ages, and it frequently coexists with other diseases of aging.

But “far too little attention has been paid to how the presence of dementia should influence the treatment of non-dementia illnesses, despite the fact that Alzheimer’s can have a profound effect on the risks and benefits of treatment,” said Brauner.

Two additional vignettes the authors presented consider other issues raised by a 78-year-old patient with dementia and an abnormal heart rhythm, and the value of screening tests for high cholesterol or colon cancer in a 69-year-old patient with dementia.

In the first case, the risks of recommended therapy were far greater in the patient with dementia, requiring a reappraisal of the usual risk-benefit analysis. In the second case, accepted guidelines conflict with the best interests of the patient, with the burden of routine care clearly exceeding the probable benefits for this patient.

Unfortunately, studies that led to the existing guidelines and standards of care excluded patients with dementia. These patients have traditionally been viewed as a vulnerable group and “protected” from participation in clinical studies.

The authors suggested that current efforts to include more women, children and the elderly in clinical trials should be extended to include patients with dementia in low-risk studies of treatments for non-dementia illnesses.

“Until we have compelling data, and such data may not be forthcoming, we must rely on our experience,” the authors noted.

Funding for the study came, in part, from the Greenwall Foundation Interdisciplinary Program in Bioethics. Additional authors include Dr. Greg Sachs, Associate Professor in Medicine, and palliative-care specialist Dr. Cameron Muir, from Northwestern University.