The Social Construction of Dementia: Implications for Healthcare Experiences of Caregivers and People Living with Dementia.
access to care
clinician-Patient relationship
dementia
healthcare planning or policy
patient expectations
qualitative methods
Journal
Journal of patient experience
ISSN: 2374-3735
Titre abrégé: J Patient Exp
Pays: United States
ID NLM: 101688338
Informations de publication
Date de publication:
2023
2023
Historique:
medline:
29
11
2023
pubmed:
29
11
2023
entrez:
29
11
2023
Statut:
epublish
Résumé
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.
Identifiants
pubmed: 38026064
doi: 10.1177/23743735231211066
pii: 10.1177_23743735231211066
pmc: PMC10663651
doi:
Types de publication
Journal Article
Langues
eng
Pagination
23743735231211066Informations de copyright
© The Author(s) 2023.
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