The role of dyadic cognitive report and subjective cognitive decline in early ADRD clinical research and trials: Current knowledge, gaps, and recommendations

Abstract

Efficient identification of cognitive decline and Alzheimer's disease (AD) risk in early stages of the AD disease continuum is a critical unmet need. Subjective cognitive decline is increasingly recognized as an early symptomatic stage of AD. Dyadic cognitive report, including subjective cognitive complaints (SCC) from a participant and an informant/study partner who knows the participant well, represents an accurate, reliable, and efficient source of data for assessing risk. However, the separate and combined contributions of self‐ and study partner report, and the dynamic relationship between the two, remains unclear. The Subjective Cognitive Decline Professional Interest Area within the Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment convened a working group focused on dyadic patterns of subjective report. Group members identified aspects of dyadic‐report information important to the AD research field, gaps in knowledge, and recommendations. By reviewing existing data on this topic, we found evidence that dyadic measures are associated with objective measures of cognition and provide unique information in preclinical and prodromal AD about disease stage and progression and AD biomarker status. External factors including dyad (participant–study partner pair) relationship and sociocultural factors contribute to these associations. We recommend greater dyad report use in research settings to identify AD risk. Priority areas for future research include (1) elucidation of the contributions of demographic and sociocultural factors, dyad type, and dyad relationship to dyad report; (2) exploration of agreement and discordance between self‐ and study partner report across the AD syndromic and disease continuum; (3) identification of domains (e.g., memory, executive function, neuropsychiatric) that predict AD risk outcomes and differentiate cognitive impairment due to AD from other impairment; (4) development of best practices for study partner engagement; (5) exploration of study partner report as AD clinical trial endpoints; (6) continued development, validation, and optimization, of study partner report instruments tailored to the goals of the research and population.

Association between Subjective Cognitive Complaints and Incident Functional Impairment in Parkinson's Disease

“…Previous studies typically have been conducted at single research centers, have had a relatively small sample size, and have specifically asked participants about their cognition, which precludes unprompted reporting and may affect the results (eg, overreporting of cognitive complaints). PD‐PROP is accessible to PD patients broadly, has a very large sample size, and asks PwP to generate their own list of problems without the imposing interaction of a clinician interview, although it is possible that obtaining input from both a patient and an informant 29,30 or objective testing of cognitive functional abilities 31 may be more accurate than only patient self‐report, given reported deficits in self‐awareness of cognitive functional abilities in PD, particularly as cognition declines 32 . Our cohort included a wide range of participants in terms of sex, age, and disease duration.…”

Relation of modifiable lifestyle and mood factors to cognitive concerns among participants and their study partners in the A4 screen data

“…Relatedly, a more nuanced understanding of how demographic and modifiable factors contribute to participant‐ and SP‐reported SCD also has the potential to inform research recruitment/design 41 and interventions. Recent studies have identified aspects of SCD (e.g., onset of cognitive decline in the past 5 years, worry about decline, and SP concern of decline) that best predict AD pathology, referred to as SCD‐plus 42 .…”

Brain Health Registry Study Partner Portal: Novel infrastructure for digital, dyadic data collection

“…Ideally the study partner knows the participant well enough to be able to provide insight into the current status of, and recent changes in, the participant's cognitive and functional abilities. 1,2 Advantages of involving dyads in research include (1) efficient, accurate, and reliable data for assessing ADRD risk 3,4 ;…”