Exploring what it is like to be diagnosed with dementia: a couple's story

Anne Fothergill

Research output: Contribution to conferencePaperpeer-review


Dementia and living with the impact of this condition is a global challenge with rates of dementia predicted to rise by 2030 to around 65.7 million people worldwide (WHO 2015). Research needs to address how those living with the condition can best be supported to live well with it.

To present the stories of one couple's experiences of living with Dementia.

This is a storyworks project. We will be co-producing the story with the couple, the Alzheimer's Society and University media students. This will be a digital story to include verbal extracts of their stories, photographs and film footage. The couple will be interviewed separately to give them the opportunity to express their stories in their own words. The outcome will be a short recording/film of what it is like to live with this condition. The themes we are interested in exploring with the couple are: how they maintain their social connections with families and others, how they developed coping strategies/resilience to living with this condition on a daily basis and whether they are affected by the possible stigma still associated with the illness.
The research team are also interested in exploring stories or narratives as a method to hear the stories of the person with dementia. We have been given a small grant to carry out this work from the Geogre Ewart Centre for Storytelling.
We are in the process of finding a couple to agree to share their stories and are working closely with the Alzheimer's Society on identifying a couple willing to take part. University ethical approval has been obtained.
Main Discussion points
1. The use of this novel method to hear the voices of persons living with dementia.
2. The challenges of co-producing a story with the couple, the Alzheimer's Society and Media students.
3. The challenges of gaining ethical approval for this type of project.
This data collection method is a fruitful means to ascertain the stories of a couple living with dementia and will inform our methodology for involving persons living with dementia in future research projects.
Original languageEnglish
Publication statusPublished - 16 Sept 2016
Event22nd International Network for Psychiatric Nursing Research (NPNR) Conference 2016: The long and winding road: mental health across the life course - Nottingham Conference Centre, Nottingham, United Kingdom
Duration: 15 Sept 201616 Sept 2016
Conference number: 22nd


Conference22nd International Network for Psychiatric Nursing Research (NPNR) Conference 2016
Abbreviated titleNPNR2016
Country/TerritoryUnited Kingdom


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