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.

Keywords: Alzheimer disease; amyloid imaging; disclosure; ethics; subjective cognitive decline.

Figure 1.

Mean scores of the STAI (state anxiety), BDI-II, and IES-R at each time point. BDI-II indicates Beck Depression Inventory-II; IES-R, Impact of Events Scale–Revised; Negative, amyloid-negative group (n = 32); Positive, amyloid-positive group (n = 10); STAI, State-Trait Anxiety Inventory.

Figure 2.

Correlations between baseline anxiety level and test-related distress at 52 weeks. IES-R indicates Impact of Events Scale–Revised; STAI, State-Trait Anxiety Inventory.