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Respite services for people with dementia and their carers: perspectives of key stakeholders

O'Shea, Emma (2020) Respite services for people with dementia and their carers: perspectives of key stakeholders. PhD thesis, Dublin City University.

Abstract
Thesis Title: Respite Services for People with Dementia and their Carers: Perspectives of Key Stakeholders Introduction: Respite services are intended to provide a temporary break in caregiving for carers. The international evidence for the effectiveness and acceptability of respite services is mixed in relation to dementia. Non-carer stakeholders have been under-represented in the existing literature, especially people with dementia. This thesis explores the perspectives of multiple stakeholders on respite services for dementia, with a view to informing service development in the Irish context. Methods: The overarching approach is pragmatic, qualitative and guided by Kitwood’s theory of ‘person-centred care’. Firstly, a concept analysis of ‘respite’ was conducted. Secondly, a qualitative systematic literature review was undertaken, synthesizing key stakeholders’ perspectives on respite services. Finally, semi-structured interviews were conducted with multiple stakeholders, including carers/people with dementia (n=15) and respite service providers/policy-makers/academics (n=20) regarding their perspectives on respite services in Ireland. Findings: The term ‘respite’ encompasses only the carer’s experience and is discordant with the principles of person-centred care. Negotiating timely access to respite services is challenging, due to under/inequitable provision, poor sign-posting, and the ambiguous legitimacy of respite needs in a biomedical-oriented health system. People with dementia sometimes experience malignant social psychologies which diminish personhood. This is partially due to deficit-based constructions of dementia and the task-focused care approach in respite settings. Many stakeholders advocate a move towards a social model of respite, with a 1) homecare orientation and 2) the capacity to support personhood for people with dementia, along with carer support. Conclusions: ‘Restorative care’ is presented as alternative nomenclature to ‘respite’, to signify an aim of restoring psychosocial wellbeing for dyads. Collaborative partnership across government departments is necessary to actualise a paradigm shift towards a social model of provision. Staff require education focused on 1) identifying and addressing psychosocial needs for dyads, and 2) supporting personhood in people with dementia. Strengths, limitations and implications are discussed.
Metadata
Item Type:Thesis (PhD)
Date of Award:March 2020
Refereed:No
Supervisor(s):Irving, Kate, O'Shea, Eamon and Timmons, Suzanne
Uncontrolled Keywords:Health services research
Subjects:Medical Sciences > Health
Medical Sciences > Nursing
Medical Sciences > Psychology
DCU Faculties and Centres:DCU Faculties and Schools > Faculty of Science and Health > School of Nursing and Human Sciences
Use License:This item is licensed under a Creative Commons Attribution-NonCommercial-No Derivative Works 3.0 License. View License
Funders:SPHeRE HRB/Atlantic Philanthropies
ID Code:24109
Deposited On:09 Apr 2020 09:56 by Kate Irving (lupton) . Last Modified 09 Apr 2020 09:56
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