Living with a diagnosis of frontotemporal dementia v1
Research type
Research Study
Full title
Living with a diagnosis of frontotemporal dementia (FTD): What helps and hinders?
IRAS ID
231798
Contact name
Suzanne Croy
Contact email
Sponsor organisation
University of Stirling
Duration of Study in the UK
3 years, 0 months, 1 days
Research summary
The study aims to explore how people with frontotemporal dementia (FTD) describe their daily experience of living with this diagnosis and what helps and hinders them to live well.
A systematic literature review revealed research focuses upon the disease process, potential pharmacological interventions or the views of family members or staff. However, the importance of incorporating the subjective views of people with dementia in research is widely acknowledged (Dewing 2007; Scottish Dementia Working Group Research Sub-group 2014). Only one paper was found which directly engaged the views of people with FTD. This study will build upon the findings of Griffin et al. (2015) and contribute to an under-researched area.
People with a diagnosis of FTD who have capacity to consent to participate will be eligible to take part in up to three semi-structured interviews. As consent is a continuous obligation, consent will be checked at the start of each interview, and attention paid throughout to any cues – verbal or non-verbal – which might indicate that the person does not wish to continue (Dewing 2007). Participants can withdraw from the study at any point.
The expected benefits of the study will be generating data in an under-researched area. The findings could be useful in providing an opportunity for people with FTD to share their perspectives, validate their experiences, provide an insight into living with FTD for family members and staff and may complement or extend the support already offered to people with FTD.
Participants will choose where they would like to be interviewed. This could be their own home or at the site of a social or health care service they receive. The interviews will be audio recorded to provide a verbatim transcript. The researcher will transcribe all interview data. The research is funded solely by the lead researcher.REC name
East of Scotland Research Ethics Service REC 2
REC reference
18/ES/0003
Date of REC Opinion
18 Jan 2018
REC opinion
Favourable Opinion