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

Introduction: 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.

Aim: To explore and understand the lived experiences of people with dementia and their family members.

Methodology: This PhD project is taking a descriptive phenomenological approach to explore the lived experiences of persons with dementia and their family member. The rationale being that stories can be a powerful method to understand the unique experiences of living with dementia from the perspective of the person with dementia and their family member. Stories will be video recorded from an estimated 30 participants, recruited through CTUHB and ABUHB Older Person’s Mental Health Services. The videos will be transcribed and returned to the participant for editing. The data will then be analysed using Colaizzi’s (1978) descriptive phenomenology analysis framework.

The participants will be asked for copies of personal photographs to be incorporated into their video recordings. These videos will then be returned to the participant as a keepsake and for use alongside traditional paper-based care plans to improve the person-centred approach to care.

Results: It is anticipated that the results of this project will be used to:
•Educate persons with dementia, family members and carers about dementia.
•Improve the care and support provided by CTUHB and ABUHB.
•Demonstrate that people with dementia can take part in research.

The project will be written up as a PhD thesis.