Exploring the Experience of Living with Young Onset Dementia [V1]
Research type
Research Study
Full title
Exploring the Experience of Living with Young Onset Dementia
IRAS ID
198498
Contact name
Charlotte Berry
Contact email
Sponsor organisation
University of Leeds
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
The primary research question posed asks ‘what is it like to live with young onset dementia?’. More specifically, what it is like for participants to receive a diagnosis of dementia when under 65 years old and the unique challenges that such individuals face. As well as this, the research aims to consider the direct experiences of the person with dementia and consider the full range of experiences including, but not limited to, the possibility of personal growth in the face of an existential threat. It is hoped that such research can go some way to challenge the current social narratives around dementia being a disease in which only loss and dysfunction are prominent. Individuals eligible to participate will be those with a formal diagnosis of dementia, who are or were aged under 65 at the time of diagnosis, who have received their diagnosis at least 12 weeks previously and who have the capacity to consent to take part in accordance with the Mental Health Act (2005). The primary research site is Leeds & York Partnership Foundation Trust Younger People with Dementia Team, with additional recruitment from Young Dementia UK website. Around 6-8 participants will be invited to take part in a number of audio-recorded interviews with the chief investigator until such a point that data saturation is reached. During the interviews participants will be invited to explore their experiences of living with young onset dementia. Participants will also be encouraged to bring in any objects, photographs, or other media as prompts for areas of discussion to be explored within the interview itself. The content from these interviews will then be analysed using a qualitative research method, known as Interpretative Phenomenological Analysis, which will help to draw out a number of themes illustrating participant’s’ experiences of living with young onset dementia.
REC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
16/YH/0389
Date of REC Opinion
26 Oct 2016
REC opinion
Further Information Favourable Opinion