What Happens When Patients Learn About Their Alzheimer’s Status?

Learning about a positive amyloid-PET result was associated with psychological changes among people with subjective cognitive decline, but those changes did not reach a threshold for clinical concern.

In the prospective AMYPAD consortium study, people who received news about a positive amyloid scan showed small increases in distress, anxiety, or depression scores compared with peers who learned they had negative scans, reported Daniele Altomare, PhD, of the University of Geneva in Switzerland, and co-authors in JAMA Network Open.

Elevated brain amyloid deposition is considered the strongest risk factor for Alzheimer’s disease, Altomare and co-authors noted. Study participants were 105 individuals with subjective cognitive decline, defined as having at least 5 years of bothersome cognitive problems despite assessments not showing cognitive impairment.

“Delivering bad news to cognitively unimpaired patients could be one of the most challenging tasks physicians have to face in their clinical practice,” the authors wrote. “Therefore, it is crucial to highlight that disclosing a positive amyloid-PET result was not associated with a clinically relevant psychological change.”

However, the knowledge of elevated amyloid was not benign, Jason Karlawish, MD, of the Penn Memory Center at the University of Pennsylvania in Philadelphia, pointed out in an accompanying editorial.

“It was associated with increases of scores on the Impact of Events Scale [IES-R], a measure of the distress precipitated by witnessing a traumatic event,” Karlawish observed. “Persons endorsed a host of behaviors and moods, such as feeling preoccupied or distracted with the information and seeking to avoid the topic.”

Altomare’s group reported that disclosure-related distress scores were higher in amyloid-positive patients, with a higher median IES-R total score of 10 vs 0 for amyloid-negative patients (scores of at least 33 indicate probable presence of post-traumatic stress disorder). IES-R avoidance scores were 0 vs 0, intrusion scores were 0.50 vs 0, and hyperarousal scores were 0.33 vs 0 (all P<0.001), respectively.

Among amyloid-positive patients, higher education was significantly associated with lower disclosure-related distress. The presence of a study partner was also associated with higher disclosure-related distress.

“Alzheimer’s disease affects one brain and at least two minds: the patient and their caregiver,” Karlawish emphasized. Learning about the presence of an Alzheimer’s disease biomarker should begin with having sufficient space and chairs in the examination room for at least two people, he added.

“There, they should meet with a variety of clinicians, such as social workers, skilled in talking about the things that make a life well lived,” he wrote. “These conversations could guide patients and their caregivers to think about who to share results with and how to plan for their futures.”

The AMYPAD study included patients from five European memory clinics who were recruited from April 2018 to October 2020. Of 105 participants with subjective cognitive decline, 27 were assessed as amyloid-positive and 78 as amyloid-negative.

The cohort had a median age of 69 years, and 56% were men. Median education was 15 years. No significant differences were seen in sociodemographic or clinical features between amyloid-positive and amyloid-negative patients. Study outcomes were assessed at baseline and after disclosure; some participants also had data collected at 13 months.

No observed differences emerged between amyloid-positive and amyloid-negative patients in median Hospital Anxiety and Depression scale (HADS) score changes from baseline to disclosure.

Main limitations included the study’s lack of long-term follow-up, which “prevents us from alleging that the disclosure of a positive amyloid-PET does not cause significant psychological risk in the long term,” Altomare and co-authors acknowledged.