Everyday Functioning in a Community-Based Volunteer Population: Differences Between Participant- and Study Partner-Report

Introduction: Impaired awareness in dementia caused by Alzheimer’s disease and related disorders made study partner-report the preferred method of measuring interference in “instrumental activities of daily living” (IADL). However, with a shifting focus toward earlier disease stages and prevention,...

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Main Authors: Merike Verrijp, Mark A. Dubbelman, Leonie N. C. Visser, Roos J. Jutten, Elke W. Nijhuis, Marissa D. Zwan, Hein P. J. van Hout, Philip Scheltens, Wiesje M. van der Flier, Sietske A. M. Sikkes
Format: Article
Language:English
Published: Frontiers Media S.A. 2022-01-01
Series:Frontiers in Aging Neuroscience
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Online Access:https://www.frontiersin.org/articles/10.3389/fnagi.2021.761932/full
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author Merike Verrijp
Mark A. Dubbelman
Leonie N. C. Visser
Leonie N. C. Visser
Roos J. Jutten
Elke W. Nijhuis
Marissa D. Zwan
Hein P. J. van Hout
Philip Scheltens
Wiesje M. van der Flier
Wiesje M. van der Flier
Sietske A. M. Sikkes
Sietske A. M. Sikkes
author_facet Merike Verrijp
Mark A. Dubbelman
Leonie N. C. Visser
Leonie N. C. Visser
Roos J. Jutten
Elke W. Nijhuis
Marissa D. Zwan
Hein P. J. van Hout
Philip Scheltens
Wiesje M. van der Flier
Wiesje M. van der Flier
Sietske A. M. Sikkes
Sietske A. M. Sikkes
author_sort Merike Verrijp
collection DOAJ
description Introduction: Impaired awareness in dementia caused by Alzheimer’s disease and related disorders made study partner-report the preferred method of measuring interference in “instrumental activities of daily living” (IADL). However, with a shifting focus toward earlier disease stages and prevention, the question arises whether self-report might be equally or even more appropriate. The aim of this study was to investigate how participant- and study partner-report IADL perform in a community-based volunteer population without dementia and which factors relate to differences between participant- and study partner-report.Methods: Participants (N = 3,288; 18–97 years, 70.4% females) and their study partners (N = 1,213; 18–88 years, 45.8% females) were recruited from the Dutch Brain Research Registry. IADL were measured using the Amsterdam IADL Questionnaire. The concordance between participant- and study partner-reported IADL difficulties was examined using intraclass correlation coefficient (ICC). Multinomial logistic regressions were used to investigate which demographic, cognitive, and psychosocial factors related to participant and study partner differences, by looking at the over- and underreport of IADL difficulties by the participant, relative to their study partner.Results: Most A-IADL-Q scores represented no difficulties for both participants (87.9%) and study partners (89.4%). The concordance between participants and study partners was moderate (ICC = 0.55, 95% confidence interval [CI] = [0.51, 0.59]); 24.5% (N = 297) of participants overreported their IADL difficulties compared with study partners, and 17.8% (N = 216) underreported difficulties. The presence of depressive symptoms (odds ratio [OR] = 1.31, 95% CI = [1.12, 1.54]), as well as memory complaints (OR = 2.45, 95% CI = [1.80, 3.34]), increased the odds of participants overreporting their IADL difficulties. Higher IADL ratings decreased the odds of participant underreport (OR = 0.71, 95% CI = [0.67, 0.74]).Conclusion: In this sample of community-based volunteers, most participants and study partners reported no major IADL difficulties. Differences between participant and study partner were, however, quite prevalent, with subjective factors indicative of increased report of IADL difficulties by the participant in particular. These findings suggest that self- and study partner-report measures may not be interchangeable, and that the level of awareness needs to be considered, even in cognitively healthy individuals.
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spelling doaj.art-384dff072ea94c6c9eeaeb82ad9ee4092022-12-22T04:04:21ZengFrontiers Media S.A.Frontiers in Aging Neuroscience1663-43652022-01-011310.3389/fnagi.2021.761932761932Everyday Functioning in a Community-Based Volunteer Population: Differences Between Participant- and Study Partner-ReportMerike Verrijp0Mark A. Dubbelman1Leonie N. C. Visser2Leonie N. C. Visser3Roos J. Jutten4Elke W. Nijhuis5Marissa D. Zwan6Hein P. J. van Hout7Philip Scheltens8Wiesje M. van der Flier9Wiesje M. van der Flier10Sietske A. M. Sikkes11Sietske A. M. Sikkes12Alzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, Amsterdam, NetherlandsAlzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, Amsterdam, NetherlandsAlzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, Amsterdam, NetherlandsDivision of Clinical Geriatrics, Center for Alzheimer Research, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, SwedenAlzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, Amsterdam, NetherlandsAlzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, Amsterdam, NetherlandsAlzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, Amsterdam, NetherlandsDepartment of General Practice and Medicine for Older Persons, Amsterdam Public Health Research Institute, Amsterdam University Medical Center, Vrije Universiteit Amsterdam, Amsterdam, NetherlandsAlzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, Amsterdam, NetherlandsAlzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, Amsterdam, NetherlandsDepartment of Epidemiology and Biostatistics, Amsterdam UMC, Amsterdam, NetherlandsAlzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, Amsterdam, NetherlandsFaculty of Behavioural and Movement Sciences, Clinical Developmental Psychology, Clinical Neuropsychology, Vrije Universiteit Amsterdam, Amsterdam, NetherlandsIntroduction: Impaired awareness in dementia caused by Alzheimer’s disease and related disorders made study partner-report the preferred method of measuring interference in “instrumental activities of daily living” (IADL). However, with a shifting focus toward earlier disease stages and prevention, the question arises whether self-report might be equally or even more appropriate. The aim of this study was to investigate how participant- and study partner-report IADL perform in a community-based volunteer population without dementia and which factors relate to differences between participant- and study partner-report.Methods: Participants (N = 3,288; 18–97 years, 70.4% females) and their study partners (N = 1,213; 18–88 years, 45.8% females) were recruited from the Dutch Brain Research Registry. IADL were measured using the Amsterdam IADL Questionnaire. The concordance between participant- and study partner-reported IADL difficulties was examined using intraclass correlation coefficient (ICC). Multinomial logistic regressions were used to investigate which demographic, cognitive, and psychosocial factors related to participant and study partner differences, by looking at the over- and underreport of IADL difficulties by the participant, relative to their study partner.Results: Most A-IADL-Q scores represented no difficulties for both participants (87.9%) and study partners (89.4%). The concordance between participants and study partners was moderate (ICC = 0.55, 95% confidence interval [CI] = [0.51, 0.59]); 24.5% (N = 297) of participants overreported their IADL difficulties compared with study partners, and 17.8% (N = 216) underreported difficulties. The presence of depressive symptoms (odds ratio [OR] = 1.31, 95% CI = [1.12, 1.54]), as well as memory complaints (OR = 2.45, 95% CI = [1.80, 3.34]), increased the odds of participants overreporting their IADL difficulties. Higher IADL ratings decreased the odds of participant underreport (OR = 0.71, 95% CI = [0.67, 0.74]).Conclusion: In this sample of community-based volunteers, most participants and study partners reported no major IADL difficulties. Differences between participant and study partner were, however, quite prevalent, with subjective factors indicative of increased report of IADL difficulties by the participant in particular. These findings suggest that self- and study partner-report measures may not be interchangeable, and that the level of awareness needs to be considered, even in cognitively healthy individuals.https://www.frontiersin.org/articles/10.3389/fnagi.2021.761932/fullinstrumental activities of daily livingagingpreclinicalawarenessAlzheimer’s diseasedementia
spellingShingle Merike Verrijp
Mark A. Dubbelman
Leonie N. C. Visser
Leonie N. C. Visser
Roos J. Jutten
Elke W. Nijhuis
Marissa D. Zwan
Hein P. J. van Hout
Philip Scheltens
Wiesje M. van der Flier
Wiesje M. van der Flier
Sietske A. M. Sikkes
Sietske A. M. Sikkes
Everyday Functioning in a Community-Based Volunteer Population: Differences Between Participant- and Study Partner-Report
Frontiers in Aging Neuroscience
instrumental activities of daily living
aging
preclinical
awareness
Alzheimer’s disease
dementia
title Everyday Functioning in a Community-Based Volunteer Population: Differences Between Participant- and Study Partner-Report
title_full Everyday Functioning in a Community-Based Volunteer Population: Differences Between Participant- and Study Partner-Report
title_fullStr Everyday Functioning in a Community-Based Volunteer Population: Differences Between Participant- and Study Partner-Report
title_full_unstemmed Everyday Functioning in a Community-Based Volunteer Population: Differences Between Participant- and Study Partner-Report
title_short Everyday Functioning in a Community-Based Volunteer Population: Differences Between Participant- and Study Partner-Report
title_sort everyday functioning in a community based volunteer population differences between participant and study partner report
topic instrumental activities of daily living
aging
preclinical
awareness
Alzheimer’s disease
dementia
url https://www.frontiersin.org/articles/10.3389/fnagi.2021.761932/full
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