The impact of a support group for people with young onset dementia_1
Research type
Research Study
Full title
The impact of a support group for people with young onset dementia
IRAS ID
154832
Contact name
Susan Walsh
Contact email
Research summary
People with young onset dementia, where the disease occurs before the age of 65, remain largely absent from studies that focus on the subjective experience of dementia and the development of services. The psychosocial implications of receiving a diagnosis of young onset dementia are particularly severe given that people are still likely to be in work and supporting dependents emotionally and/or financially. Distress is exacerbated by the individual's awareness of problems and the likelihood of being physically healthy and active. Together these issues underscore the requirement for age-specific services for young onset dementia. Unfortunately, existing services remain predominantly tailored towards older people. The limited research available on the lived experience of young onset dementia reports that people struggle with the lack of meaningful occupation and profound feelings of social isolation. The proposed study presents a unique opportunity to explore in depth the direct experiences of people with young onset dementia who receive regular, activity-focussed support amongst peers. Qualitative data will be collected through semi-structured, face-to-face, in-depth interviews with four to six participants under the age of 65 with a formal diagnosis of young onset dementia. Participants will be recruited from a group of patients who attend a weekly day group for those in the mild stages of dementia, which is part of a specialist young onset dementia service led by professionals at Rotherham, Doncaster and South Humber National Health Service. Each individual will be interviewed once only, for approximately 45-60 minutes duration. Interviews will take place in a private room located on site at the weekly day group. Only one interview will be conducted per day and the duration of the research will therefore last between four and six weeks.
REC name
North West - Preston Research Ethics Committee
REC reference
14/NW/1129
Date of REC Opinion
31 Jul 2014
REC opinion
Favourable Opinion