'Pushing back': People newly diagnosed with dementia and their experiences of the Covid-19 pandemic restrictions in England.
Covid-19
active social agent
active social citizenship
assets-based
autonomy
coping
dementia
pandemic
strengths-based
Journal
International journal of geriatric psychiatry
ISSN: 1099-1166
Titre abrégé: Int J Geriatr Psychiatry
Pays: England
ID NLM: 8710629
Informations de publication
Date de publication:
10 2022
10 2022
Historique:
received:
28
09
2021
accepted:
12
08
2022
pubmed:
3
9
2022
medline:
9
9
2022
entrez:
2
9
2022
Statut:
ppublish
Résumé
Research into people with dementia's experiences of the Covid-19 pandemic has tended to focus on vulnerabilities and negative outcomes, with the risk of reproducing a discourse in which people with dementia are positioned as passive. Informed by concepts positioning people with dementia as 'active social agents', we aimed to identify the pandemic-related challenges faced by people recently diagnosed with dementia and examine the ways in which they actively coped with, and adapted to, these challenges. In-depth interviews with 21 people recently diagnosed with dementia, recruited through an existing national cohort. Data was analysed thematically using Framework. Key challenges included reduced social contact, loneliness and loss of social routines; difficulties accessing and trusting health services; dementia-unfriendly practices; and disparate experiences of being able to 'get out' into the physical neighbourhood. People with dementia responded to challenges by maintaining and extending their social networks and making the most of 'nodding acquaintances'; learning new skills, for communication and hobbies; supporting others, engaging in reciprocal exchange and valuing connection with peers; seeking help and advocacy and challenging and resisting dementia-unfriendly practices; maintaining and adapting habitual spatial practices and being determined to 'get out'; and employing similar emotional coping strategies for the pandemic and dementia. Support for people with dementia, especially during public health crises when carers and services are under pressure, should involve utilising existing capacities, appropriately supporting the acquisition of new knowledge and skills, 'safety-netting' through the availability of a named professional, advocacy and support and use of 'check-in calls' and creating supportive social and environmental circumstances for people with dementia to sustain their own well-being.
Sections du résumé
BACKGROUND AND OBJECTIVES
Research into people with dementia's experiences of the Covid-19 pandemic has tended to focus on vulnerabilities and negative outcomes, with the risk of reproducing a discourse in which people with dementia are positioned as passive. Informed by concepts positioning people with dementia as 'active social agents', we aimed to identify the pandemic-related challenges faced by people recently diagnosed with dementia and examine the ways in which they actively coped with, and adapted to, these challenges.
RESEARCH DESIGN AND METHODS
In-depth interviews with 21 people recently diagnosed with dementia, recruited through an existing national cohort. Data was analysed thematically using Framework.
FINDINGS
Key challenges included reduced social contact, loneliness and loss of social routines; difficulties accessing and trusting health services; dementia-unfriendly practices; and disparate experiences of being able to 'get out' into the physical neighbourhood. People with dementia responded to challenges by maintaining and extending their social networks and making the most of 'nodding acquaintances'; learning new skills, for communication and hobbies; supporting others, engaging in reciprocal exchange and valuing connection with peers; seeking help and advocacy and challenging and resisting dementia-unfriendly practices; maintaining and adapting habitual spatial practices and being determined to 'get out'; and employing similar emotional coping strategies for the pandemic and dementia.
CONCLUSIONS
Support for people with dementia, especially during public health crises when carers and services are under pressure, should involve utilising existing capacities, appropriately supporting the acquisition of new knowledge and skills, 'safety-netting' through the availability of a named professional, advocacy and support and use of 'check-in calls' and creating supportive social and environmental circumstances for people with dementia to sustain their own well-being.
Identifiants
pubmed: 36052759
doi: 10.1002/gps.5803
pmc: PMC9539182
doi:
Types de publication
Journal Article
Research Support, U.S. Gov't, Non-P.H.S.
Langues
eng
Sous-ensembles de citation
IM
Informations de copyright
© 2022 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.
Références
Lancet Digit Health. 2021 Apr;3(4):e217-e230
pubmed: 33612430
Can J Public Health. 2021 Jun;112(3):400-411
pubmed: 33825134
BMC Med Res Methodol. 2013 Sep 18;13:117
pubmed: 24047204
BMC Geriatr. 2019 Oct 30;19(1):295
pubmed: 31666020
Dementia (London). 2021 Aug;20(6):2007-2023
pubmed: 33381996
J Pers Soc Psychol. 1989 Feb;56(2):267-83
pubmed: 2926629
Am J Alzheimers Dis Other Demen. 2017 Feb;32(1):56-62
pubmed: 27831477
BMC Geriatr. 2021 May 10;21(1):301
pubmed: 33971847
Int Psychogeriatr. 2018 Jun;30(6):867-880
pubmed: 28462764
J Clin Ethics. 1998 Spring;9(1):23-34
pubmed: 9598430
Alzheimers Dement (N Y). 2022 May 02;8(1):e12236
pubmed: 35509503
Age Ageing. 2021 May 5;50(3):657-663
pubmed: 33481988
Int Psychogeriatr. 2010 Jun;22(4):607-17
pubmed: 20214844
Front Psychiatry. 2020 Oct 26;11:585686
pubmed: 33192733
Soc Media Soc. 2020 Sep 9;6(3):2056305120948255
pubmed: 34192039
Health Soc Care Community. 2014 Nov;22(6):588-97
pubmed: 24697946
Dementia (London). 2013 Jul;12(4):481-93
pubmed: 24336956
Alzheimers Dement. 2012;8(2):131-68
pubmed: 22404854
Dementia (London). 2022 May;21(4):1363-1380
pubmed: 35333111
Sociol Health Illn. 2017 Feb;39(2):199-211
pubmed: 28177147
Dementia (London). 2019 Feb;18(2):725-741
pubmed: 28178858
J Alzheimers Dis. 2016;52(2):619-29
pubmed: 27031480
Health Technol Assess. 2005 Mar;9(10):1-93, iii-iv
pubmed: 15774233
J Aging Stud. 2017 Jan;40:29-35
pubmed: 28215753
Int J Geriatr Psychiatry. 2020 Mar;35(3):290-301
pubmed: 31876069
Sociol Health Illn. 2017 Feb;39(2):258-269
pubmed: 28177143
BMC Geriatr. 2020 Nov 17;20(1):477
pubmed: 33203379
Dementia (London). 2013 Jan;12(1):123-36
pubmed: 24336667
Int J Geriatr Psychiatry. 2022 Oct;37(10):
pubmed: 36052759