Person‐centered assessment of apathy and resistance to care in people living with dementia: Review of existing measures

INTRODUCTION: The review described in this paper builds upon the Dementia Care Practice Recommendations (DCPR) published by the Alzheimer's Association in 2018 and addresses behavior change and the need for targeted outcome measures that evolve from person‐centered frameworks and help evaluate...

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Autores principales: Mast, Benjamin T., Ertle, Emilee M., Kolanowski, Ann, Mountain, Gail, Moniz‐Cook, Esme, Halek, Margareta
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9322820/
https://www.ncbi.nlm.nih.gov/pubmed/35910667
http://dx.doi.org/10.1002/trc2.12316
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author Mast, Benjamin T.
Ertle, Emilee M.
Kolanowski, Ann
Mountain, Gail
Moniz‐Cook, Esme
Halek, Margareta
author_facet Mast, Benjamin T.
Ertle, Emilee M.
Kolanowski, Ann
Mountain, Gail
Moniz‐Cook, Esme
Halek, Margareta
author_sort Mast, Benjamin T.
collection PubMed
description INTRODUCTION: The review described in this paper builds upon the Dementia Care Practice Recommendations (DCPR) published by the Alzheimer's Association in 2018 and addresses behavior change and the need for targeted outcome measures that evolve from person‐centered frameworks and help evaluate interventions. Apathy and resistance to care (RTC) are two specific behavioral expressions of unmet need or distress exhibited by people living with dementia, which are upsetting to formal and family caregivers and compromise quality of life for people living with dementia. METHODS: We conducted literature searches of major databases (PsycInfo, PubMed, EBSCO, CINAHL) for papers examining apathy and RTC constructs in samples of people living with dementia. Reliability and validity coefficients were reviewed and reported, along with examination of whether each measure facilitates contextual understanding of behavior. RESULTS: Three stand‐alone measures of RTC and ten measures of apathy were identified and reviewed. The RTC measures demonstrated good psychometric properties but do not include the perspective of the person living with dementia or contextual aspects of the behavior. The identified apathy measures demonstrated fair to good psychometric properties, and although there is greater consideration of context, none adequately include the perspective of the person living with dementia. DISCUSSION: Although reliable and valid measures have been developed to measure apathy and RTC in people living with dementia, there is greater need for conceptually driven measurement of behavior context and for tools that elicit and include the perspective of the person living with dementia.
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spelling pubmed-93228202022-07-30 Person‐centered assessment of apathy and resistance to care in people living with dementia: Review of existing measures Mast, Benjamin T. Ertle, Emilee M. Kolanowski, Ann Mountain, Gail Moniz‐Cook, Esme Halek, Margareta Alzheimers Dement (N Y) Special Topic Section INTRODUCTION: The review described in this paper builds upon the Dementia Care Practice Recommendations (DCPR) published by the Alzheimer's Association in 2018 and addresses behavior change and the need for targeted outcome measures that evolve from person‐centered frameworks and help evaluate interventions. Apathy and resistance to care (RTC) are two specific behavioral expressions of unmet need or distress exhibited by people living with dementia, which are upsetting to formal and family caregivers and compromise quality of life for people living with dementia. METHODS: We conducted literature searches of major databases (PsycInfo, PubMed, EBSCO, CINAHL) for papers examining apathy and RTC constructs in samples of people living with dementia. Reliability and validity coefficients were reviewed and reported, along with examination of whether each measure facilitates contextual understanding of behavior. RESULTS: Three stand‐alone measures of RTC and ten measures of apathy were identified and reviewed. The RTC measures demonstrated good psychometric properties but do not include the perspective of the person living with dementia or contextual aspects of the behavior. The identified apathy measures demonstrated fair to good psychometric properties, and although there is greater consideration of context, none adequately include the perspective of the person living with dementia. DISCUSSION: Although reliable and valid measures have been developed to measure apathy and RTC in people living with dementia, there is greater need for conceptually driven measurement of behavior context and for tools that elicit and include the perspective of the person living with dementia. John Wiley and Sons Inc. 2022-07-26 /pmc/articles/PMC9322820/ /pubmed/35910667 http://dx.doi.org/10.1002/trc2.12316 Text en © 2022 The Authors. Alzheimer's & Dementia: Translational Research & Clinical Interventions published by Wiley Periodicals, LLC on behalf of Alzheimer's Association. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
spellingShingle Special Topic Section
Mast, Benjamin T.
Ertle, Emilee M.
Kolanowski, Ann
Mountain, Gail
Moniz‐Cook, Esme
Halek, Margareta
Person‐centered assessment of apathy and resistance to care in people living with dementia: Review of existing measures
title Person‐centered assessment of apathy and resistance to care in people living with dementia: Review of existing measures
title_full Person‐centered assessment of apathy and resistance to care in people living with dementia: Review of existing measures
title_fullStr Person‐centered assessment of apathy and resistance to care in people living with dementia: Review of existing measures
title_full_unstemmed Person‐centered assessment of apathy and resistance to care in people living with dementia: Review of existing measures
title_short Person‐centered assessment of apathy and resistance to care in people living with dementia: Review of existing measures
title_sort person‐centered assessment of apathy and resistance to care in people living with dementia: review of existing measures
topic Special Topic Section
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9322820/
https://www.ncbi.nlm.nih.gov/pubmed/35910667
http://dx.doi.org/10.1002/trc2.12316
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