An exploration of stories or narratives from older persons living with dementia

Background: There are 45,000 people living in Wales with a dementia diagnosis (Alzheimer’s Society, 2017). Everyone’s dementia trajectory is unique making it important to give the “real person” a say over the care and support they need (Social Care Wales, 2018). Life story work is being used in various health care settings as it incorporates information about the person’s past and present to improve their current situation (Murphy and Moyes, 1997).
Aims: To explore and understand what life is like for people with dementia (PWD) and their families through storytelling and narratives.
Sampling Method: Six PWD and six family members are participating in this project and were recruited through Hafod Care Association. The PWD are 65+, acknowledge their dementia diagnosis, can give full informed consent and live in a residential home.
Method: This is a descriptive phenomenology study, understanding people’s experiences of living with dementia, without preconceptions, using narratives or stories. All documents used in this project were adapted to be “dementia friendly”.
Specific Analytical Approach: The narratives and stories will be video recorded, transcribed and edited by the participants. Transcripts will be analysed using Colaizzi’s (1978) descriptive phenomenology analysis framework.
Main Findings: By September, the project will be complete. Possible outcomes are (1) educate people about life with dementia, (2) improve the care and support for PWD and their families, (3) demonstrate that PWD can reliably take part in qualitative research and (4) initiate the use of video life story work alongside traditional paper-based care plans to personalise care.
Discussion: Life story work can help PWD feel proud about the life they have led (McKeown et al., 2010). The participant’s videos will be edited, incorporating person photographs, and returned to them. The videos can be used by staff alongside traditional care plans to individualise the mental health care (Batson et al., 2002) and as keepsakes for the families after their loved one has passed away (Benbow and Kingston, 2016).
Conclusion: PWD have equal right to everyone else in society, including equal right to be involved in research and in the development of their care and support plans (Downs, 1997).