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The Social Construction of Dementia: Implications for Healthcare Experiences of Caregivers and People Living with Dementia

Globally, systems have invested in a variety of dementia care programs in response to the aging population and those who have been diagnosed with dementia. This study is a qualitative secondary analysis of interview data from a larger study investigating stakeholder perceptions of programs that supp...

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Autores principales: Farhana, Nusrat, Peckham, Allie, Marani, Husayn, Roerig, Monika, Marchildon, Greg
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10663651/
https://www.ncbi.nlm.nih.gov/pubmed/38026064
http://dx.doi.org/10.1177/23743735231211066
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author Farhana, Nusrat
Peckham, Allie
Marani, Husayn
Roerig, Monika
Marchildon, Greg
author_facet Farhana, Nusrat
Peckham, Allie
Marani, Husayn
Roerig, Monika
Marchildon, Greg
author_sort Farhana, Nusrat
collection PubMed
description Globally, systems have invested in a variety of dementia care programs in response to the aging population and those who have been diagnosed with dementia. This study is a qualitative secondary analysis of interview data from a larger study investigating stakeholder perceptions of programs that support caregivers and people living with an Alzheimer's Disease or Alzheimer's Disease-related dementia (AD/ADRD) in five North American jurisdictions. This study analyzed interviews with individuals living with an AD/ADRD and caregivers of individuals living with an AD/ADRD (n = 11). Thematic analysis was conducted to understand how the perception of dementia may have shaped their engagement and experience with healthcare systems. Our analysis resulted in three main themes of care users’ experience: (i) undesirable experience owing to the overarching negative shared understanding and stereotyping of dementia; (ii) dismissal throughout disease progression when seeking health and social care support; and (iii) dehumanization during care interactions. The findings carry critical social and clinical implications, for example, in informing person-centered approaches to care, and communication tools clinicians can use to enhance provider, patient, and caregiver well-being.
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spelling pubmed-106636512023-11-05 The Social Construction of Dementia: Implications for Healthcare Experiences of Caregivers and People Living with Dementia Farhana, Nusrat Peckham, Allie Marani, Husayn Roerig, Monika Marchildon, Greg J Patient Exp Research Article Globally, systems have invested in a variety of dementia care programs in response to the aging population and those who have been diagnosed with dementia. This study is a qualitative secondary analysis of interview data from a larger study investigating stakeholder perceptions of programs that support caregivers and people living with an Alzheimer's Disease or Alzheimer's Disease-related dementia (AD/ADRD) in five North American jurisdictions. This study analyzed interviews with individuals living with an AD/ADRD and caregivers of individuals living with an AD/ADRD (n = 11). Thematic analysis was conducted to understand how the perception of dementia may have shaped their engagement and experience with healthcare systems. Our analysis resulted in three main themes of care users’ experience: (i) undesirable experience owing to the overarching negative shared understanding and stereotyping of dementia; (ii) dismissal throughout disease progression when seeking health and social care support; and (iii) dehumanization during care interactions. The findings carry critical social and clinical implications, for example, in informing person-centered approaches to care, and communication tools clinicians can use to enhance provider, patient, and caregiver well-being. SAGE Publications 2023-11-05 /pmc/articles/PMC10663651/ /pubmed/38026064 http://dx.doi.org/10.1177/23743735231211066 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by-nc/4.0/This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Research Article
Farhana, Nusrat
Peckham, Allie
Marani, Husayn
Roerig, Monika
Marchildon, Greg
The Social Construction of Dementia: Implications for Healthcare Experiences of Caregivers and People Living with Dementia
title The Social Construction of Dementia: Implications for Healthcare Experiences of Caregivers and People Living with Dementia
title_full The Social Construction of Dementia: Implications for Healthcare Experiences of Caregivers and People Living with Dementia
title_fullStr The Social Construction of Dementia: Implications for Healthcare Experiences of Caregivers and People Living with Dementia
title_full_unstemmed The Social Construction of Dementia: Implications for Healthcare Experiences of Caregivers and People Living with Dementia
title_short The Social Construction of Dementia: Implications for Healthcare Experiences of Caregivers and People Living with Dementia
title_sort social construction of dementia: implications for healthcare experiences of caregivers and people living with dementia
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10663651/
https://www.ncbi.nlm.nih.gov/pubmed/38026064
http://dx.doi.org/10.1177/23743735231211066
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