Subjective Cognitive Decline in Older Adults: An Overview of Self-Report Measures Used Across 19 International Research Studies

Issue title: Subjective Cognitive Decline

Article type: Research Article

Authors: Rabin, Laura A.^{a; b; c; *} | Smart, Colette M.^{d; e} | Crane, Paul K.^f | Amariglio, Rebecca E.^g | Berman, Lorin M.^a | Boada, Mercé^h | Buckley, Rachel F.ⁱ | Chételat, Gaël^{j; k; l; m} | Dubois, Bruno^{n; o} | Ellis, Kathryn A.^p | Gifford, Katherine A.^q | Jefferson, Angela L.^q | Jessen, Frank^{r; s} | Katz, Mindy J.^b | Lipton, Richard B.^b | Luck, Tobias^{t; u} | Maruff, Paul^v | Mielke, Michelle M.^{w; x} | Molinuevo, José Luis^y | Naeem, Farnia^a | Perrotin, Audrey^{j; k; l; m} | Petersen, Ronald C.^{w; x} | Rami, Lorena^y | Reisberg, Barry^{z; aa} | Rentz, Dorene M.^g | Riedel-Heller, Steffi G.^t | Risacher, Shannon L.^ab | Rodriguez, Octavio^h | Sachdev, Perminder S.^ac | Saykin, Andrew J.^{c; ab} | Slavin, Melissa J.^ad | Snitz, Beth E.^ae | Sperling, Reisa A.^g | Tandetnik, Caroline^{o; af} | van der Flier, Wiesje M.^ag | Wagner, Michael^{ah; ai; aj} | Wolfsgruber, Steffen^{ah; ai} | Sikkes, Sietske A.M.^ag | the Alzheimer’s Disease Neuroimaging Initiative¹

Affiliations: [a] Department of Psychology, Brooklyn College and The Graduate Center of CUNY, Brooklyn, NY, USA | [b] Department of Neurology, Albert Einstein College of Medicine, Bronx, NY, USA | [c] Department of Psychiatry, Dartmouth Medical School, Dartmouth-Hitchcock Medical Center, Lebanon, NH, USA | [d] Department of Psychology, University of Victoria, Victoria, BC, Canada | [e] Centre on Aging, University of Victoria, Victoria, BC, Canada | [f] Department of Medicine, University of Washington, Harborview Medical Center, Seattle, WA, USA | [g] Department of Neurology, Harvard Medical School, Brigham and Women’s Hospital, Massachusetts General Hospital, Boston, MA, USA | [h] Fundació ACE. Barcelona Alzheimer Treatment and Research Center, Barcelona, Spain | [i] Melbourne School of Psychological Sciences, University of Melbourne and the Florey Institutes of Neurosciences and Mental Health, Melbourne, Australia | [j] INSERM, Caen, France | [k] Université de Caen Basse-Normandie, Caen, France | [l] École Pratique des Hautes Études, Caen, France | [m] CHU de Caen, Caen, France | [n] Université Pierre et Marie Curie-Paris 6, AP-HP, Hôpital de la Salpêtrière, Paris, France | [o] Centre des Maladies Cognitives et Comportementales, Institut du Cerveau et de la Moelle épinière (ICM), UMR-S975, Paris, France | [p] Academic Unit for Psychiatry of Old Age, Department of Psychiatry, University of Melbourne, Melbourne, Australia | [q] Vanderbilt Memory & Alzheimer’s Center, Department of Neurology, Vanderbilt University Medical Center, Nashville, TN, USA | [r] Department of Psychiatry and Psychotherapy, Medical Faculty, University of Cologne, Cologne, Germany | [s] German Center for Neurodegenerative Diseases (DZNE), Bonn, Germany | [t] Institute of Social Medicine, Occupational Health and Public Health (ISAP), University of Leipzig, Leipzig, Germany | [u] LIFE – Leipzig Research Center for Civilization Diseases, University of Leipzig, Leipzig, Germany | [v] Cogstate, Ltd., Melbourne, Australia | [w] Department of Health Sciences Research, Mayo Clinic, Rochester, MN, USA | [x] Department of Neurology, Mayo Clinic, Rochester, MN, USA | [y] Alzheimer’s Disease and Other Cognitive Disorders Unit, IDIBAPS, Hospital Clinic, Barcelona, Spain | [z] Department of Psychiatry, New York University Langone Medical Center, New York, NY, USA | [aa] Silberstein Aging and Dementia Research Center, New York University School of Medicine, New York, NY, USA | [ab] Department of Radiology and Imaging Sciences, Indiana University School of Medicine, Indianapolis, IN, USA | [ac] Centre for Healthy Brain Ageing, School of Psychiatry, University of New South Wales, Sydney, Australia | [ad] Dementia Collaborative Research Centre, School of Psychiatry, UNSW Medicine, University of New South Wales, Sydney, Australia | [ae] Department of Neurology, University of Pittsburgh, Pittsburgh, PA, USA | [af] Université Paris Descartes, Paris, France | [ag] Alzheimer Center and Department of Neurology, Neuroscience Campus Amsterdam and Department of Epidemiology and Biostatistics, VU University Medical Center, Amsterdam, The Netherlands | [ah] Department of Psychiatry and Psychotherapy, University of Bonn, Bonn, Germany | [ai] German Center for Neurodegenerative Diseases (DZNE), Bonn, Germany | [aj] Clinical Treatment and Research Center for Neurodegenerative Disease (KBFZ), University of Bonn, Bonn, Germany

Correspondence: [*] Correspondence to: Laura A. Rabin, Department of Psychology, Brooklyn College/CUNY, 2900 Bedford Avenue, Brooklyn, NY 11210, USA. Tel.: +1 718 951 5601; Fax: +1 718 951 4814; lrabin@brooklyn.cuny.edu

Note: [1] Data used in preparation of this article were obtained from the Alzheimer’s Disease Neuroimaging Initiative (ADNI) database (adni.loni.usc.edu). As such, the investigators within the ADNI contributed to the design and implementation of ADNI and/or provided data but did not participate in analysis or writing of this report. A complete listing of ADNI investigators can be found at: http://adni.loni.usc.edu/wp-content/uploads/how_to_apply/ADNI_Acknowledgement_List.pdf.

Abstract: Research increasingly suggests that subjective cognitive decline (SCD) in older adults, in the absence of objective cognitive dysfunction or depression, may be a harbinger of non-normative cognitive decline and eventual progression to dementia. Little is known, however, about the key features of self-report measures currently used to assess SCD. The Subjective Cognitive Decline Initiative (SCD-I) Working Group is an international consortium established to develop a conceptual framework and research criteria for SCD (Jessen et al., 2014, Alzheimers Dement 10, 844–852). In the current study we systematically compared cognitive self-report items used by 19 SCD-I Working Group studies, representing 8 countries and 5 languages. We identified 34 self-report measures comprising 640 cognitive self-report items. There was little overlap among measures— approximately 75% of measures were used by only one study. Wide variation existed in response options and item content. Items pertaining to the memory domain predominated, accounting for about 60% of items surveyed, followed by executive function and attention, with 16% and 11% of the items, respectively. Items relating to memory for the names of people and the placement of common objects were represented on the greatest percentage of measures (56% each). Working group members reported that instrument selection decisions were often based on practical considerations beyond the study of SCD specifically, such as availability and brevity of measures. Results document the heterogeneity of approaches across studies to the emerging construct of SCD. We offer preliminary recommendations for instrument selection and future research directions including identifying items and measure formats associated with important clinical outcomes.

Keywords: Cognition, cognitive complaints, dementia, early detection, memory complaints, subjective cognition, mild cognitive impairment, preclinical Alzheimer’s disease, questionnaire, subjective cognitive impairment, subjective memory complaints

DOI: 10.3233/JAD-150154

Journal: Journal of Alzheimer's Disease, vol. 48, no. s1, pp. S63-S86, 2015