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

Introduction: Dementia has been recognised as one of the largest health and social care issue in Wales (Welsh Government, 2017), with approximately 45,000 people living in Wales with a diagnosis (Welsh Government, 2018). Whilst researching dementia treatment is vital, equal effort needs to be placed into making life with dementia easier for all of those affected (Department of Health, 2016).
Aim: This study aimed to explore what it is like to live with dementia from the perspective of the person with dementia and their family member.
Methodology: This is a descriptive phenomenology study that is utilising digital storytelling as the data collection technique to answer the research question “what is it like to live with dementia?”.
The participants with dementia will all be over sixty five, are aware of their dementia diagnosis, are able to give full informed consent and are accessing memory clinics within CTMUHB or ABUHB. They will participate alongside a family member or close friend who is also able to give full informed consent. It is estimated that thirty participants will be recruited for this study from the memory clinics.
The participants will be able to edit their digital narratives; copies of which will be returned to the participant at the end of the study should they request it.
Results: The narratives provided by the participants will be analysed using Colaizzi’s (1978) descriptive phenomenology analysis framework.
Conclusion: This study is still in its infancy, awaiting ethical approval. It is hoped that the findings of this study can be used to educate others about life with dementia and identify the needs of those affected by dementia. This study is “phase 2” of a PhD thesis.