Disclosure of Alzheimer’s Risk May Not Result in Short-Term Increase in Depression, Anxiety
Abstract
Results reflect the reactions of a research study cohort that likely differs markedly from real-world clinical populations. But the findings suggest that the way people are informed about risk makes a difference.
Older individuals enrolled in a research project who are informed by health care professionals that they have elevated levels of the protein amyloid—a known risk factor for Alzheimer’s disease—do not appear to experience adverse short-term psychological responses compared with those who learn their amyloid levels are normal, according to a report published August 10 in JAMA Neurology.
The findings reflect the reactions of a research cohort, many of whom had a family history of Alzheimer’s and were prepared by the protocols of the study to learn of a possible risk. But the results do suggest that risk disclosure can be done safely when individuals are properly prepared to receive the information.
Joshua Grill, Ph.D., of the University of California, Irvine, and colleagues analyzed data from the Anti-Amyloid Treatment in Asymptomatic AD (A4) Study, a randomized clinical trial of the medication solanezumab for Alzheimer’s that began in 2014. As part of the trial, participants aged 65 to 85 years underwent brain scans to assess amyloid levels. The sample consisted of 1,167 individuals who learned that they had elevated levels of amyloid and 538 participants who were told their amyloid levels were normal.
Before and after disclosure of amyloid status, participants completed the Geriatric Depression Scale (GDS), the State-Trait Anxiety Inventory (STAI), and the Columbia Suicide Severity Rating Scale. The average period between being informed of amyloid status and completing the follow-up psychological assessments was between 41 and 56 days for all participants.
Among those with elevated amyloid, concerns about Alzheimer’s increased significantly, indicating that they understood that their biomarker result conferred increased risk for dementia. However, scores measuring depression and anxiety were not significantly higher than those who learned their status was normal. Moreover, there were no suicide attempts or suicide behaviors. New-onset suicidal ideations were infrequent and not statistically different between the groups.
“The take-home message is that, with a rigorous process in place, this information can be delivered safely, at least in the short term,” Grill told Psychiatric News.
He noted, however, that current guidelines advise against disclosing biomarker information to cognitively unimpaired participants because results don’t meaningfully change the recommendations that physicians can make to at-risk individuals: healthy diet; physical exercise; and consideration of long-term planning, including advance directives.
“The guidelines would change dramatically in the setting of an approved therapy that can stave off dementia,” he said.
In the meantime, the results from the research trial suggest that how information is disclosed is crucial. “There was a rigorous process implemented to consent, educate, and assess participants enrolling in the trial and to prepare them to receive this information,” Grill said. “Investigators were trained on this approach to ensure consistency across sites and the results suggest that this was successful.”
Carol Podgorski, Ph.D., M.P.H., says that patients in real-world clinical populations often avoid care if they believe they will be told of a risk for dementia.
Carol Podgorski, Ph.D., M.P.H., an associate professor of psychiatry at the University of Rochester who reviewed the JAMA Neurology report for Psychiatric News, said that the real-world clinical population differs dramatically from those who enter a research protocol.
Podgorski is a family therapist who has worked with more than 600 families at the University of Rochester Institute for Aging. She said that many people are terrified of a diagnosis of Alzheimer’s and delay or avoid visiting a physician when they believe they are at risk. But Podgorski cited research showing that careful clinical preparation for a discussion about risk can be valuable. The essentials of discussing dementia risk include building rapport, exploring the patient’s knowledge and beliefs about dementia, learning about wishes and preferences for care, engaging the family, and communicating respect for the patient’s autonomy.
Underscoring the importance of how clinicians disclose risk, Podgorski cited the late oncologist Robert Buckman, M.D., who said, “The task of breaking bad news is a testing ground for the entire range of our professional skills and abilities. If we do it badly, the patients or family members may never forgive us; if we do it well, they will never forget us.”
Grill acknowledged, “There is still a lot of work left to do. We need long-term data, and we need more data on what, if any, impact this information has on behaviors.”
Especially crucial is information on how disclosure is received in diverse populations. “We know that there are cultural differences in attitudes toward Alzheimer’s disease, but we don’t know if this extends to differences in attitudes toward biomarker testing or differences in the safety and impact of disclosure,” Grill said. “I believe this will be critical to improving the diversity of trial populations and instructing a future clinical practice that is socially just and reduces current health disparities.” ■
“Short-Term Psychological Effects of Disclosing Amyloid Imaging Results to Research Subjects Who Do Not Have Cognitive Impairment” is posted here.
