Intergenerational experiences of young onset dementia : a qualitative longitudinal study

Bellass, S 2016, Intergenerational experiences of young onset dementia : a qualitative longitudinal study , PhD thesis, University of Salford.

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This thesis presents sociological understandings of processes that occur in intergenerational relationships when one person develops young onset dementia i.e. dementia before the age of 65. While interest in the subjective experience of this condition has increased in recent years, qualitative research has almost exclusively focussed on individuals - those living with the condition, their spousal carers or their children - rather than enmeshed family and friend relationships. In addition, virtually all of the research on this dynamic, unpredictable condition has been cross-sectional and is limited in the extent to which it can capture change as dementia progresses. To address this limitation in the knowledge base, this study uses a qualitative longitudinal methodology to generate insights into the effect of young onset dementia on intergenerational relationships over time. The research questions this study addresses are: 1) How do people within intergenerational families make sense of young onset dementia over the past, present and future and 2) To what extent and by what processes do people within different generations experience a sense of belonging to the experience of dementia? Eighteen participants from five intergenerational families where one person had received a diagnosis of young onset dementia were recruited via two third sector service providers. All five families participated in the first wave of interviews and three families were retained throughout the year-long data collection process and were interviewed at months 0, 6 and 12. Data were analysed as unique cases to create compelling, richly textured intergenerational accounts, then brought into conversation with each other through a cross-case generational analysis. The novel application of a longitudinal sociological perspective in a field dominated by cross-sectional practitioner research has enabled the generation of unique knowledge about how young onset dementia is lived in a broader relational context. Specifically, two generations were less connected to the experience of dementia: parents of people with young onset dementia, who were perceived to have unrealistic expectations about their child's limitations, and grandchildren, who were perceived to have limited awareness about the condition. Additionally, the concept of transgenerationality, where a grandparent with dementia was perceived to have relocated in a grandchild's generation, has been developed. The recommendations for policy and practice are that the provision of support should be broadened from the current focus on the carer-cared for dyad to encompass a wider range of interpersonal relationships.

Item Type: Thesis (PhD)
Schools: Schools > School of Health and Society
Funders: School of Nursing. Midwifery, Social Work and Social Sciences
Depositing User: S Bellass
Date Deposited: 20 Mar 2017 08:48
Last Modified: 20 Oct 2021 14:14

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