Working carers living well with dementia: sustaining wellbeing through work-life reconciliation

Clarke, Rachel (2019) Working carers living well with dementia: sustaining wellbeing through work-life reconciliation. Doctoral thesis (PhD), University of Sussex.

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Enabling family carers to live well with dementia is a key UK policy objective. The aim of the Care Act is to sustain the wellbeing of family carers. For those family dementia carers who combine care with a working role, policy incentives are concerned with supporting working carers to sustain the work-life balance. Along with an aging population, the abolition of the default retirement age means that there are likely to be increasing numbers of family dementia carers who face the challenge of sustained care and work. However, very little is known about the experience of working family carers for people with dementia. The aim of this thesis is to improve understanding about the experiences which support and challenge a sustainable work and life balance for dementia working carers. The following questions were addressed to meet the study aims and to develop a working model of sustainability for dementia working carers: Do working and non-working dementia carers differ in caregiving experience, psychological resources, social support, wellbeing, and quality of life? What factors are associated with sustainable psychological wellbeing, everyday functioning and work and life balance among dementia working carers? How do dementia working carers contextualise the experience of sustainable work and life balance?
To address the research objectives, this thesis applied a mixed-methodology using structured interviews and semi-structured interviews, based on conceptual models associated with resilience and role conflict. Secondary structured interview data was firstly explored from a larger national database of 1238 working and non-working dementia carers. Primary structured data was collected from a smaller cohort of 27 dementia working carers. In the larger cohort, structured interviews explored measures associated with psychological resources, the caregiving experience, social support, quality of life, and wellbeing, which were compared between working and non-working groups using multiple regression analyses. In the primary cohort, measures associated with psychological resources, the caregiving experience, work-tofamily/family-to-work conflict, coping strategies, care-recipient dependence, everyday functioning (i.e. memory and attention skills), were compared using basic t-tests, between those dementia working carers with low and high wellbeing. Semi-structured, artefact focused interviews were conducted with 24 dementia working carers in the primary cohort. Using 'artefact elicitation', participants were asked to select an object of personal importance which represented the work-life balance. Thematic analyses identified sub-themes which created a richer understanding of the strategies used to sustain work and life, and the challenges facing dementia working carers.
Comparisons between working and non-working dementia carers in the larger cohort, showed that working carers experienced higher self-efficacy, lower perceptions of caregiving competence, and better quality oflife (associated with greater self-esteem and reduced relative stress). In the primary cohort, greater wellbeing outcomes were associated with reduced role captivity, lower caregiving burden, less time-based and strain-based family-to-work conflict, and higher caregiving competence. The main sub-themes from semi-structured interviews demonstrated that dementia working carers managed to achieve sustainability in the following ways: organisational skills; respite strategies; support (home and work); transferable skills (between work and care). The challenges to sustainability for dementia working carers were associated with: caregiving burden; work and life conflict (e.g. time constraints, poor overall wellbeing); outstanding support needs (e.g. respite care, integrated services, emotional, and financial support).
The outcomes of this research suggested that psychological resources, social resources, cognitive resources, a good caregiving experience, and positive coping skills, contribute to sustained work-life
reconciliation for dementia working carers. In conclusion, this thesis demonstrated that dementia working carers utilise a variety of creative methods to sustain work-life balance. The threats to work-life reconciliation discussed however, increase the risk of work and family conflict, and require some rethinking to current policies and practices which are designed to support dementia working carers.

Item Type: Thesis (Doctoral)
Schools and Departments: School of Education and Social Work > Social Work and Social Care
Subjects: H Social Sciences > HV Social pathology. Social and public welfare. Criminology > HV0040 Social service. Social work. Charity organization and practice Including social case work, private and public relief, institutional care, rural social work, work relief
R Medicine > RC Internal medicine > RC0321 Neurosciences. Biological psychiatry. Neuropsychiatry > RC0438 Psychiatry, including Psychopathology > RC0513 Psychoses > RC0521 Dementia
Depositing User: Library Cataloguing
Date Deposited: 30 Oct 2019 10:09
Last Modified: 30 Oct 2019 10:09

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