An Exploration of Stories of Older Persons and Family Members Living with Dementia

Alex Walker, Anne Fothergill, Rachel Iredale, Robert Richards, Amanda Whent

    Research output: Contribution to conferencePoster


    Introduction: The Welsh Government’s (2017) Social Care Research and Development Strategy for Wales 2018-2023 notes that dementia is one of the largest health and social care issues in Wales. In Wales alone, there are roughly 45,000 people with a dementia diagnosis (Alzheimer’s Society, 2017). The dementia trajectory is unique to each individual (Andrews et al., 2017), therefore, it is important to give the “real people” a say over the care and support they need (Social Care Wales, 2018).
    Methodology: The aim of this study was to explore and understand the lived experience of people with dementia and their family members. This was a descriptive phenomenology study incorporating the use of digital storytelling to explore the life stories of people with dementia and their family members. Phase 1 of this study was conducted within Hafod Care Association with recruitment through residential care homes. Two people with dementia and five family members took part in this study. The participants were given the opportunity to edit their digital stories and add personal photographs throughout. The narratives were then analysed using Colaizzi’s (1978) descriptive phenomenology analysis framework.
    Results: The contents of the life stories was divided into eight themes; life before dementia, dementia onset, dementia diagnosis, life with dementia, support, relationships, care providers and advice. Both of the participants with dementia were able to describe their childhood in much detail and showed contentment with their lives. Both were accepting of their dementia diagnoses but could not remember the diagnosis process. Family members showed determination in obtaining a dementia diagnosis, but once the diagnosis was given, they were unsure where to go for support and advice.
    Next Steps: Phase 2 of this study will be conducted within CTMUHB and ABUHB, with recruitment taking place through memory clinics. The same methodology will be used. It is hoped that recruitment through memory clinics will result in more people with dementia participating who will be at an earlier stage of their dementia journey; this would provide an overall explanation of the dementia journey from the early stages through to residential care. Phase 2 is currently going through ethics.
    Original languageEnglish
    Publication statusPublished - 12 Jun 2019
    EventFLSE Postgraduate Research Conference - University of South Wales, Pontypridd, United Kingdom
    Duration: 12 Jun 201912 Jun 2019


    ConferenceFLSE Postgraduate Research Conference
    Country/TerritoryUnited Kingdom


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