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

Background: In Wales alone, there are roughly 45,000 people with a dementia diagnosis (Alzheimer’s Society, 2017) which costs the Welsh government £1.4 billion per year in care and support (Alzheimer’s Society, 2015). With such high levels of prevalence and costs, it is vital that the care and support being provided for those affected by dementia is exactly what they need. Social Care Wales (2018) illustrated how important it is to give the “real people” a say over the care and support they need.

Method: This is a descriptive phenomenology study incorporating life story work as the data collection tool. Descriptive phenomenology allows the researcher to understand life with dementia without preconceptions. Life story work can be a powerful method of understanding people’s unique experiences. This study is still in its infancy but it is estimated that 15 people with dementia and 15 family members will take part. Participants will be recruited from the memory clinics in CTUHB and ABUHB. Participants will be video recorded and given the opportunity to edit their videos. The contents of the videos will be analysed within Colaizzi’s (1979) descriptive phenomenology framework. The videos are of particular importance as they are a way of capturing unique memories, will be returned to participants as keep sakes and contain rich information to help understand the experiences of people with dementia.

Outcomes: Results from this study will be used to educate people about life with dementia. Based on the patients’ and family members’ experiences of living with dementia, recommendations will be made to both CTUHB and ABUHB for service improvement or the implementation of new services in accordance with what the participants say they need. This research will also demonstrate that people with dementia can reliably take part in research.
This project will be written up as a PhD thesis, due October 2020.

Conclusion: This project is in line with Social Care Wales (2018) guidelines by incorporating people with dementia in research and using their experiences to improve the care and support being offered to them.