Understanding the experiences of caring for a partner with young onset dementia: An interpretative phenomenological analysis

Goldsmith, Angela

Abstract

Young onset dementia, diagnosed before the age of 65 presents unique challenges for individuals and their carers. The prevalence of young onset dementia in the UK is rising (Carter et al, 2018) with Alzheimer’s disease being the most common type of dementia (Rosser et al, 2010). Carers of people living with young onset dementia are more likely to be partners than relatives or friends (Ducharme et al, 2015). In comparison with late onset dementia, individuals with young onset dementia are more likely to develop a rarer type of dementia that requires specialist support (Collins et al, 2020), and have significantly different needs. People living with young onset dementia may still be working, parenting children, or have other caring responsibilities and financial commitments (Rabanal et al, 2018). Delays in diagnosis, stigma and a lack of meaningful age appropriate services present further complexities for people living with young onset dementia. Caring partners face unique challenges, including psychological distress, multiple and diverse losses, and difficulties coping with the impact on their relationships (Parsons, 2019). This research aimed to explore how individuals experience and make sense of caring for a partner with young onset dementia. Findings from previous studies suggest that further research is required to examine the unique subjective experiences of the person caring, and to understand how younger carers cope with changes in their relationship (Lockeridge and Simpson, 2013). This study therefore aimed to expand on previous findings. It is hoped that the exploration of their experiences will help to further understand the thoughts and needs of this client group, raise awareness of young onset dementia through dissemination of findings, improve therapeutic practice with carers, feed into service development for young onset dementia and challenge stigmatised attitudes towards this marginalised group. This qualitative study adopted a critical realist and phenomenological approach as the epistemological position and interpretative phenomenological analysis was employed to explore the experiences of caring for a partner with young onset dementia. Semi-structured interviews were conducted with eight participants (six women and two men), six of which took place virtually via Microsoft Teams, one over the telephone and one in person. Interview transcripts were analysed using interpretative phenomenological analysis following the steps outlined by Smith, Flowers & Larkin (2022). Four group experiential themes (GETs) emerged from the data, each consisting of two to three personal experiential themes (PETs). Theme one ‘The long road to diagnosis’, illustrates how the diagnostic journey was experienced. Theme two ‘Ignored and forgotten’ highlights the shared experience of the lack of post-diagnostic support and the lack of awareness and understanding from others. The third theme ‘So much has changed, everything is different’ explores changes in the couple relationship and identity, and the negative impact of dementia on familial relationships. The final theme four ‘Where do I go from here?’ explores ways of coping and adaptations to loss. These findings address a gap in the existing literature, providing valuable contributions to understanding the subjective experiences of caring for a partner with young onset dementia. This study has implications for how services and practitioners engage with people living with young onset dementia and their carers. The implications are multifaceted, encompassing the need for timely diagnosis, targeted psychosocial interventions, raising awareness, and nuanced relationship focused support. By addressing specific challenges faced by caring partners, psychologists and other healthcare professionals can contribute to improving the overall wellbeing of this marginalised group and challenge societal perceptions of young onset dementia.

• Thesis Type: Thesis
• Deposit Date: Mar 20, 2024
• Publicly Available Date: Sep 4, 2024
• Public URL: https://uwe-repository.worktribe.com/output/11834584
• Award Date: Sep 4, 2024