An Exploration of Stories or Narratives of Older Persons Living with Dementia

There are roughly 50,000,000 people worldwide with a diagnosis of dementia (WHO, 2017). In Wales alone, dementia care costs the Welsh Government £1.4 billion per year (Alzheimer’s Society, 2015). With such high figures for both the prevalence and care costs of dementia, it is imperative that the health and wellbeing needs of people with dementia are paramount.
Traditionally, it was believed that people with dementia (PWD) were a "diseased entity" who would not be able to provide accurate insight into their condition (Cottrell and Schultz, 1993). Nowadays, researchers realise that the best people to explain life with dementia, are the people with dementia. For people with dementia to be incorporated in research, advice had to be sought from many different people; e.g. safeguarding leads, DEEP, care staff.
This research project is taking a phenomenological approach by exploring the unique experiences of those living with dementia. This project is aiming to (1) explore and understand the lived experiences of PWD and their family members (FM) (2) identify areas where support services are insufficient and (3) write a MRes thesis.
This research project is exploring the stories or narratives collected from 12 participants. The PWD (1) live within South Wales, (2) are 65+, (3) know their diagnosis and (4) receive care through Hafod Care Association. The FM are related to someone who fits the inclusion criteria.For this project, participants are video recorded while narrating (1) their key life events; from childhood through to the present day (PWD) or (2) their experiences of living with someone who has dementia (FM).
The recordings will be edited with the participants and accompanied by personal photographs and a transcript. Transcipts will be narratively analysed.
This project will demonstrate that PWD are reliable participants. Findings will be used to (1) write a 25,000-word Thesis (2) disseminate results through academic conferences/publications (3) understand the lived experiences of dementia (4) identify improvements in dementia care and (5) develop dementia care strategies within Hafod Care Association.
By July, the project will be in the final phases, therefore, the poster will contain introduction, methodology and early findings.