Psychosocial services and supports: Concepts, preferences and resource allocation for family carers of people with dementia in Ireland.
Teahan, Áine
Teahan, Áine
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Identifiers
http://hdl.handle.net/10379/17025
https://doi.org/10.13025/16232
https://doi.org/10.13025/16232
Repository DOI
Publication Date
2021-08-31
Type
Thesis
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Abstract
The majority of community-based care for people with dementia is provided by family carers, many of whom experience decreased mental, physical and financial well-being due to their caring role. Across Europe, governments have increasingly adopted ageing-in-place policies, redistributing care work from residential to community-based settings. This has indirectly increased pressure on family carers who already may experience negative mental, physical and financial consequences associated with caring. To maintain their own well-being, as well as that of the person with dementia, family carers will require increased support from government in the future. Psychosocial supports are often proposed as a way of supporting family carers of people with dementia. However, the concept of psychosocial support is relatively new, with considerable uncertainty surrounding what does and does not fall into the category. Generally, definitions of ‘psychosocial’ in family caring literature are framed solely at an individual level, without considering the wider social context. Consequently, policy-makers seeking to develop psychosocial avenues to support family carers of people with dementia are often constrained to evidence relating to individual level interventions. This thesis explores several aspects of psychosocial support, with the view of informing policy development in this area. This thesis covers five studies. The first study explores an alternative conceptualisation of psychosocial support for family carers of people with dementia. Evidence relating to family carers of people with dementia is mapped onto a psychosocial pathway framework, highlighting challenges experienced by family carers within individual and wider social contexts. The second study involves secondary data analysis of a pre-existing national dataset to compare carer burden among family carers of people with and without dementia in Ireland. The third study involves a qualitative exploration of family carers’ perspectives of attending a dementia-specific psychosocial service (Dementia Café). The fourth study employs a Nominal Group Technique (NGT) approach to elicit family carer preferences for psychosocial supports to address the challenges they experience arising from individual and social contexts. Using Discrete Choice Experiment (DCE) methods, the final study ascertains public preferences and willingness-to-pay (WTP) additional taxation to fund increased provision of the supports identified by family carers in the NGT groups. This thesis makes several novel contributions to knowledge. I propose adopting a psychosocial pathway framework to understand the wider social, as well as, individual level challenges experienced by family carers of people with dementia. While individual level psychosocial supports are important, they are limited in their capacity to address challenges generated within the wider social context, as indicated by my work on Dementia Cafés. Family carers of people with dementia are more likely to experience higher levels of carer burden, as highlighted in the secondary data analysis, suggesting that they experience a unique set of challenges. Although significant research has explored unmet needs among carers, there is limited information on what services and supports best address these needs, as articulated by family carers themselves. The NGT approach not only identified family carer rankings for various services and supports, but also prioritised carer preferences in a policy-accessible manner. Through the DCE approach, I identified that citizens are willing-to-pay additional taxation to fund increased provision of psychosocial supports for family carers. This is important, given the fact that any meaningful increase in resource allocation for family carers in Ireland will have to be funded through general taxation. Overall, the findings of this thesis provide important insights into psychosocial support avenues for family carers of people with dementia. The thesis provides a comprehensive overview of the challenges experienced by family carers, identifies their preferences for different services and supports, and explores the public’s WTP additional taxation to fund new approaches to care, including new levels of provision. Three papers from this thesis have already been published in peer-reviewed journals. A fourth has been accepted for publication by the journal Social Science and Medicine.
Publisher
NUI Galway