Literature DB >> 24339077

'It's a huge maze, the system, it's a terrible maze': dementia carers' constructions of navigating health and social care services.

Elizabeth Peel1, Rosie Harding2.   

Abstract

Dementia is a challenging, progressive set of conditions which present a large care burden to informal, familial carers. A complex array of health and social care services are needed to support people living with dementia. Drawing on the interlinked 'Duties to Care' and 'Dementia Talking' projects, in this article we focus on British carers' talk about health and social care services. We explore data from a mixed-method questionnaire (n = 185), four focus groups and eleven interviews with informal carers of people living with dementia using thematic discourse analysis. Three themes are discussed: (1) services as a 'maze'; (2) services as overly limited - 'beyond our remit'; and (3) the battle and fighting discourse deployed by these carers. Our analysis highlights that carers find navigating systemic issues in dementia care time-consuming, unpredictable and often more difficult than the caring work they undertake.
© The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.

Entities:  

Keywords:  Alzheimer’s disease; carer; dementia; discourse analysis; health and social care services

Mesh:

Year:  2013        PMID: 24339077     DOI: 10.1177/1471301213480514

Source DB:  PubMed          Journal:  Dementia (London)        ISSN: 1471-3012


  17 in total

1.  Characteristics of people with dementia lost to follow-up from a dementia care center.

Authors:  Nicole D Boyd; Georges Naasan; Krista L Harrison; Sarah B Garrett; Talita D'Aguiar Rosa; Brenda Pérez-Cerpa; Shamiel McFarlane; Bruce L Miller; Christine S Ritchie
Journal:  Int J Geriatr Psychiatry       Date:  2021-10-06       Impact factor: 3.485

Review 2.  Urgent care for patients with dementia: a scoping review of associated factors and stakeholder experiences.

Authors:  Jemima Dooley; Matthew Booker; Rebecca Barnes; Penny Xanthopoulou
Journal:  BMJ Open       Date:  2020-09-16       Impact factor: 2.692

3.  The Precarity of Older Adults Living Alone With Cognitive Impairment.

Authors:  Elena Portacolone; Robert L Rubinstein; Kenneth E Covinsky; Jodi Halpern; Julene K Johnson
Journal:  Gerontologist       Date:  2019-03-14

4.  Successful collaboration in dementia care from the perspectives of healthcare professionals and informal carers in Germany: results from a focus group study.

Authors:  Astrid Stephan; Ralph Möhler; Anna Renom-Guiteras; Gabriele Meyer
Journal:  BMC Health Serv Res       Date:  2015-05-28       Impact factor: 2.655

5.  Diagnostic communication in the memory clinic: a conversation analytic perspective.

Authors:  Elizabeth Peel
Journal:  Aging Ment Health       Date:  2015-02-03       Impact factor: 3.658

6.  Dementia at the End of Life and Family Partners: A Symbolic Interactionist Perspective on Communication.

Authors:  Christopher Johnson; Jordan Kelch; Roxanna Johnson
Journal:  Behav Sci (Basel)       Date:  2017-07-09

7.  'The living death of Alzheimer's' versus 'Take a walk to keep dementia at bay': representations of dementia in print media and carer discourse.

Authors:  Elizabeth Peel
Journal:  Sociol Health Illn       Date:  2014-06-17

8.  Development of an optimised key worker framework for people with dementia, their family and caring unit living in the community.

Authors:  Emma Renehan; Dianne Goeman; Susan Koch
Journal:  BMC Health Serv Res       Date:  2017-07-20       Impact factor: 2.655

9.  Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries.

Authors:  Astrid Stephan; Anja Bieber; Louise Hopper; Rachael Joyce; Kate Irving; Orazio Zanetti; Elisa Portolani; Liselot Kerpershoek; Frans Verhey; Marjolein de Vugt; Claire Wolfs; Siren Eriksen; Janne Røsvik; Maria J Marques; Manuel Gonçalves-Pereira; Britt-Marie Sjölund; Hannah Jelley; Bob Woods; Gabriele Meyer
Journal:  BMC Geriatr       Date:  2018-06-04       Impact factor: 3.921

10.  Understanding the needs and experiences of people with young onset dementia: a qualitative study.

Authors:  Luisa I Rabanal; John Chatwin; Andy Walker; Maria O'Sullivan; Tracey Williamson
Journal:  BMJ Open       Date:  2018-10-21       Impact factor: 2.692

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