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.
Aims:
This study has two aims. Firstly, to explore and understand the lived experience of older people with dementia. Secondly, to explore and understand the lived experience of family members of older people with dementia.
Methodology/Approach:
This is a descriptive phenomenology study incorporating digital life story work as the data collection tool. Descriptive phenomenology allows the researcher to understand life with dementia without preconceptions. Digital life story work can be a powerful method of understanding people’s unique experiences.
Phase 1: The initial phase of this study was conducted in 2018, whereby 7 participants (2 people with dementia and 5 family members) were recruited from Hafod Care Association residential homes. Participants were video recorded and given the opportunity to edit their videos. The contents of the videos were 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.
Phase 2: 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.
Findings and Impact:
Results from phase 1 of the study were used to formulate recommendations. These recommendations were (1) better signposting to charity organisations who offer information and support, (2) implementation of social support services within Hafod Care Association for family members and (3) a more inclusive diagnosis system whereby people with dementia, family members and health care professionals are all included in the diagnosis process. Phase 1 was written up as a report and presented to Hafod Care Association. As a result of this report, some care home managers have created a “dementia information” board within the care homes which signposts people to further information and support.
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.