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

Rachel L. Nosheny, University of California San Francisco Department of Psychiatry San Francisco California USA.
Rebecca Amariglio, Center 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.
Sietske A. Sikkes, Amsterdam 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.
Carol Van Hulle, Wisconsin Alzheimer's Disease Research Center University of Wisconsin-Madison Madison Wisconsin USA.
Maria Aparecida Bicalho, UFMG: Federal University of Minas Gerais Department of Clinical Medicine Jenny de Andrade Faria - Center for Geriatrics and Gerontology of UFMG Belo Horizonte Brazil.
N Maritza Dowling, George Washington University Department of Acute & Chronic Care School of Nursing Department of Epidemiology & Biostatistics Milken Institute School of Public Health Washington District of Columbia USA.
Sonia Maria Brucki, Group of Cognitive and Behavioral Neurology - University of São Paulo São Paulo Brazil.
Zahinoor Ismail, Hotchkiss Brain Institute and O'Brien Institute for Public Health Cumming School of Medicine University of Calgary Calgary Alberta Canada.
Kensaku Kasuga, Department of Molecular Genetics Brain Research Institute Niigata University Niigata Japan.
Elizabeth Kuhn, UNICAEN, INSERM, PhIND "Physiopathology and Imaging of Neurological Disorders," Institut Blood and Brain @ Caen-Normandie Normandie University Caen France.
Katya Numbers, Centre for Healthy Brain Ageing (CHeBA) Department of Psychiatry University of New South Wales Sydney New South Wales Australia.
Anna Aaronson, Veteran's Administration Advanced Research Center San Francisco California USA.
Davide Vito Moretti, IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli Alzheimer Rehabilitation Operative Unit Brescia Italy.
Arturo X. Pereiro, Faculty of Psychology Department of Developmental Psychology University of Santiago de Compostela Galicia Spain.
Gonzalo Sánchez-Benavides, Barcelona Beta Brain Research Center Barcelona Spain.
Allis F. Sellek Rodríguez, Costa Rican Foundation for the Care of Older Adults with Alzheimer's and Other Dementias (FundAlzheimer Costa Rica) Cartago Costa Rica.
Prabitha Urwyler, ARTORG Center for Biomedical Engineering University of Bern University Neurorehabilitation Unit Department of Neurology Inselspital Bern Switzerland.
Kristina Zawaly, University of Auckland Department of General Practice and Primary Health Care School of Population Health Faculty of Medical and Health Sciences Auckland New Zealand.

Document Type

Journal Article

Publication Date

1-1-2022

Journal

Alzheimer's & dementia (New York, N. Y.)

Volume

8

Issue

1

DOI

10.1002/trc2.12357

Keywords

Alzheimer's disease; activities of daily living; informant‐reported outcomes; mild cognitive impairment; study partner–reported outcomes; subjective cognitive decline

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.

Department

Nursing Faculty Publications

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