Constructing Normalcy in Dementia Care: Carers' Perceptions of Their Roles and the Supports They Need.
Caregiving – Informal
Memory
Person-centered Care
Psychosocial
Qualitative research methods
Journal
The Gerontologist
ISSN: 1758-5341
Titre abrégé: Gerontologist
Pays: United States
ID NLM: 0375327
Informations de publication
Date de publication:
15 07 2020
15 07 2020
Historique:
received:
27
06
2019
pubmed:
14
11
2019
medline:
18
11
2020
entrez:
14
11
2019
Statut:
ppublish
Résumé
People with dementia are critically dependent on their carers when accessing and utilizing health care. To inform health care development and delivery, we aimed to explore carers' perceptions of their role in caring for a family member with dementia and to identify carers' skills and attributes and factors impacting on care. We used semistructured interviews to collect data from 25 carers supporting older adults with dementia. Data were thematically analyzed and the paradigm model was used to guide theory development. "Constructing normalcy" was central to all carers did, impacted by stage of life and relationship status and driven by a holistic focus on their care-recipient's quality of life. Goals guiding care were: keeping the peace; facilitating participation, happiness and independence; and ensuring safety. Enablers included: social contact; knowledge; and quality social services. Barriers included health and legal issues; symptoms of dementia; and reduced knowledge. These goals kept the peace and reduced stress for the cared-for person, but often at the cost of unrelenting responsibility and loss of carers' original roles. Discussion and Implications: As carers are so critical to the access and uptake of health care of those with dementia, health professionals and services need to support carers in their quest to construct normalcy. Our findings provide guidance to assist in ensuring appropriate support and understanding of carers work in order to optimize dementia health care delivery.
Sections du résumé
BACKGROUND AND OBJECTIVES
People with dementia are critically dependent on their carers when accessing and utilizing health care. To inform health care development and delivery, we aimed to explore carers' perceptions of their role in caring for a family member with dementia and to identify carers' skills and attributes and factors impacting on care.
RESEARCH DESIGN AND METHODS
We used semistructured interviews to collect data from 25 carers supporting older adults with dementia. Data were thematically analyzed and the paradigm model was used to guide theory development.
RESULTS
"Constructing normalcy" was central to all carers did, impacted by stage of life and relationship status and driven by a holistic focus on their care-recipient's quality of life. Goals guiding care were: keeping the peace; facilitating participation, happiness and independence; and ensuring safety. Enablers included: social contact; knowledge; and quality social services. Barriers included health and legal issues; symptoms of dementia; and reduced knowledge. These goals kept the peace and reduced stress for the cared-for person, but often at the cost of unrelenting responsibility and loss of carers' original roles. Discussion and Implications: As carers are so critical to the access and uptake of health care of those with dementia, health professionals and services need to support carers in their quest to construct normalcy. Our findings provide guidance to assist in ensuring appropriate support and understanding of carers work in order to optimize dementia health care delivery.
Identifiants
pubmed: 31722390
pii: 5624935
doi: 10.1093/geront/gnz151
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
905-915Informations de copyright
© The Author(s) 2019. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.