No consensus on when, how, by whom — even if — Alzheimer's patients are told of their disease

June 9, 2004 -- To tell or not to tell, that is the question. Should Alzheimer's disease patients be told of the diagnosis? If so, when, how and by whom?

Brian D. Carpenter, Ph.D., an assistant professor of psychology in Arts & Sciences at Washington University in St. Louis, conducted a review of related study literature that shows there is little consensus among clinicians on the issue of disclosing a dementia diagnosis and great room for much more research.

Photo courtesy of Alzheimer's Association, St. Louis Chapter

A WUSTL psychologist says there is little consensus among doctors when it comes to disclosing a dementia diagnosis to patients and caregivers.

Carpenter's review, done with research assistant Jennifer Dave, was published in the April 2004 issue of The Gerontologist.

"If contemporary debate and practice are any indication, there is no consensus on these matters," Carpenter says in the article "Disclosing a Dementia Diagnosis: A Review of Opinion and Practice, and a Proposed Research Agenda." "Nor does there seem to be enough systemic research to enable their thorough consideration, even though diagnostic disclosure seems like an obvious precursor to any other discussion about dementia care."

Carpenter's review covered medical literature about dementia published from 1972 to 2002, a period during which knowledge about dementia has greatly expanded.

The review identified a broad list of arguments both for and against diagnostic disclosure to patients and to caregivers.

"Arguments in favor of disclosure tend to be based on a respect for patient autonomy and the value of truth telling in familial and professional relationships," Carpenter says. Those in favor of disclosure are guided by an ethical perspective that emphasizes individual rights.

"Contrasting arguments against disclosure often cite the lack of useful treatments and the uncertainty of diagnosis and prognosis," Carpenter says. "Disclosure to patients may also be considered pointless if cognitive deficits limit their ability to understand the meaning and implications of a dementia diagnosis. Disclosure might result in hopelessness, and in more severe cases, suicidality."

Telling family members

The review also studied the pros and cons of informing family members of a dementia disclosure. Doctors who favored telling family members cited explanation of symptoms, ability to do future planning and emotional support for the patient. Those who oppose informing family cited patient confidentiality, desire of patient to do it themselves, potential of abuse and overreaction of family members regarding their own risk.

But a 1996 study of spouse caregivers showed 70 percent of respondents favored disclosure in order to enable the family to get information on the disease and plan for the future, to qualify the patient for drug treatments and to allow family to assess their own risk.

In a 1988 study of ambulatory patients of all ages, 92 percent said they would want to know if they were diagnosed with dementia. Only a few studies to date have included patients with dementia, Carpenter's review states. Carpenter received support from the Brookdale Foundation as a Brookdale fellow while writing this review.

Although clinicians are divided over whether to tell, disclosure is promoted by many professional organizations, including the Alzheimer's Association, the American Medical Association, the American Psychological Association and the American Psychiatric Association. Some such organizations have constructed guidelines on how to handle disclosure of dementia diagnoses.

Reacting to the diagnosis

Brian Carpenter

The Washington University review identifies several potential research questions, and Carpenter's Clinical Geropsychology Lab has already begun a related research project.

Carpenter and principal investigator Chengjie Xiong, Ph.D., a research assistant professor of biostatistics at Washington University's School of Medicine, have received a grant from the University of Missouri's Alzheimer's Disease and Related Disorders Research Program. Their project, which began earlier this year, will follow a group of patients through Washington University's Alzheimer's Disease Research Center for one year.

Through questionnaires, interviews, phone calls and videotapes of doctor visits, the researchers seek to learn how patients and their caregivers react to the diagnosis.

"We want to find out: How do people react after they get the diagnosis?" Carpenter says. "How long does that reaction last? What are the other ways that their lives change in the year after they get the diagnosis?"

Carpenter hopes the study can "provide some evidence that encourages clinicians to provide information to their patients in a way that's most beneficial."

"Part of what we're learning is about the patients and what they want to know, when they want to know it and who they want to hear it from?" Carpenter says. He noted that some patients may prefer to hear the diagnosis from their own physician or from a family member.

"But we're also learning a lot about the physicians who are delivering the news," he says. "Because we have the videotapes, we can watch what the physicians are saying and how they say it. Maybe it's the case that the physicians who are good at delivering this news have a certain set of skills or a certain style that helps ease the blow."

Carpenter recommends that future studies branch out into the broader medical community, such as physicians who work in general practice or small rural practices.