2022.10.12
The role of dyadic cognitive report and subjective cognitive decline in early ADRD clinical research and trials: Current knowledge, gaps, and recommendations
Alzheimer's Dement. 2022;8:e12357. https://doi.org/10.1002/trc2.12357
Rachel L. Nosheny1,2, Rebecca Amariglio3, Sietske A.M. Sikkes4, Carol Van Hulle5, Maria Aparecida Camargos Bicalho6, N. Maritza Dowling7, Sonia Maria Dozzi Brucki8, Zahinoor Ismail9, Kensaku Kasuga10, Elizabeth Kuhn11, Katya Numbers12, Anna Aaronson2, Davide Vito Moretti13, Arturo X. Pereiro14, Gonzalo Sánchez-Benavides15, Allis F. Sellek Rodríguez16, Prabitha Urwyler17, Kristina Zawaly18, for the Dyadic Patterns of Subjective Reportworking group within the Subjective Cognitive Decline Professional Interest Area, Alzheimer's Association ISTAART
1University of California San Francisco, Department of Psychiatry, San Francisco, California, USA
2Veteran's Administration Advanced Research Center, San Francisco, California, USA
3Center for Alzheimer Research and Treatment, Department of Neurology, Brigham and Women's Hospital, Department of Neurology Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts, USA
4Amsterdam University Medical Centers, Department of Neurology, Alzheimer Center Amsterdam, North Holland, the Netherlands/VU University, Department of Clinical, Neuro & Development Psychology, North Holland, the Netherlands
5Wisconsin Alzheimer's Disease Research Center, University of Wisconsin-Madison, Madison, Wisconsin, USA
6UFMG: Federal University of Minas Gerais, Department of Clinical Medicine, Jenny de Andrade Faria - Center for Geriatrics and Gerontology of UFMG, Belo Horizonte, Brazil
7GeorgeWashington University, Department of Acute & Chronic Care, School of Nursing, Department of Epidemiology & Biostatistics,Milken Institute School of Public Health, Washington, District of Columbia, USA
8Group of Cognitive and Behavioral Neurology - University of São Paulo, São Paulo, Brazil
9Hotchkiss Brain Institute and O'Brien Institute for Public Health, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada
10Department of Molecular Genetics, Brain Research Institute, Niigata University, Niigata, Japan
11UNICAEN, INSERM, PhIND "Physiopathology and Imaging of Neurological Disorders,", Institut Blood and Brain@Caen-Normandie, Normandie University, Caen, France
12Centre for Healthy Brain Ageing (CHeBA), Department of Psychiatry, University of New SouthWales, Sydney, New SouthWales, Australia
13IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Alzheimer Rehabilitation Operative Unit, Brescia, Italy
14Faculty of Psychology, Department of Developmental Psychology, University of Santiago de Compostela, Galicia, Spain
15Barcelona Beta Brain Research Center, Barcelona, Spain
16Costa Rican Foundation for the Care of Older Adults with Alzheimer's and Other Dementias (FundAlzheimer Costa Rica), Cartago, Costa Rica
17ARTORG Center for Biomedical Engineering, University of Bern, University Neurorehabilitation Unit, Department of Neurology, Inselspital, Bern, Switzerland
18University of Auckland, Department of General Practice and Primary Health Care, School of Population Health, Faculty of Medical and Health Sciences, Auckland, New Zealand
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.
*Reprinted under the terms of the Creative Commons Attribution License (CC BY).
