Disclosure of Amyloid Status for Risk of Alzheimer Disease to Cognitively Normal Research Participants With Subjective Cognitive Decline: A Longitudinal Study

Abstract

This study aimed to investigate the long-term impacts of disclosing amyloid status for a risk of Alzheimer disease (AD) to cognitively normal research participants with subjective cognitive decline (SCD), which represents an initial manifestation of AD. Forty-two participants were classified as the amyloid-positive ( n = 10) or amyloid-negative ( n = 32) groups. We assessed symptoms of anxiety, depression, and test-related distress at 6, 24, and 52 weeks after results disclosure. No difference was found over time in anxiety, depression, and test-related distress in either group. Although no significant differences were observed between groups in anxiety or depression, the amyloid-negative group had a significantly higher level of test-related distress than the amyloid-positive group at 52 weeks. Disclosing amyloid status to cognitively healthy research participants with SCD did not cause significant long-term psychological risks. However, a theoretical spectrum of subjective concern may exist about cognitive decline in amyloid-negative individuals.

Moving beyond disclosure: Stages of care in preclinical Alzheimer's disease biomarker testing

“…While there may be a transient increase in mild‐to‐moderate distress immediately after disclosure, 44 there appears to be a low risk of negative psychological outcomes over 3 to 6 months 45 . Studies in smaller populations have found no significant negative psychological sequelae among amyloid‐positive participants at 12 or 18 months, with 10 participants, 46 and 4 participants, 47 respectively. Recently a limited number of studies have proposed assessing the impact of communicating amyloid and APOE biomarker results together, 11,48 but the effects of disclosing multiple sources of risk on psychosocial outcomes are still unknown.…”

“…Research participants may differ in terms of motivation, risk tolerance, and psychological presentation. 45 Studies typically include participants over 65 years of age, with mean ages over 70, 45 , 46 and there is limited evidence about outcomes among younger individuals. Work with diverse groups to better anticipate those populations who may present to clinical practices in the future is critically important.…”

Short-term Psychological Outcomes of Disclosing Amyloid Imaging Results to Research Participants Who Do Not Have Cognitive Impairment

“…Studies in smaller numbers of individuals with elevated amyloid levels support safety through 6 and 12 months. 26,28 In a nested qualitative study of a subset of participants in the A4 trial (50 with elevated amyloid levels and 30 with not elevated amyloid levels), however, approximately 20% of participants with elevated amyloid levels acknowledged considering suicide or physician-assisted death if they experience cognitive decline or become a burden to others. 31 These experiences emphasize the importance of the longitudinal evaluation of psychological outcomes being gathered in the A4 study.…”

Family members' perspectives on learning cognitively unimpaired older adults' amyloid‐β PET scan results

“…Learning dementia risk information precipitates changes in health behaviors and future plans and raises concerns around stigma and discrimination. [7][8][9][10][11][12][13][14] This suggests the need to understand the preclinical AD experience of families as well, because family members share in AD dementia risk-whether directly due to shared risk factors or indirectly due to their likelihood of becoming caregivers. Moreover, family members may be asked to monitor the patient-in-waiting for changes in cognition and function or to engage in planning for the future.…”