Understanding the needs of people with rare dementias
Research type
Research Study
Full title
Understanding the needs of people with rare dementias and complex needs: A focus group investigation
IRAS ID
262590
Contact name
Clarissa Giebel
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
0 years, 5 months, 31 days
Research summary
Research Summary
Background: There are many different subtypes of dementia, all of which experience different symptoms and needs. Whilst Alzheimer’s disease dementia is the most common form, people may receive a diagnosis of vascular dementia, frontotemporal dementia, or Lewy Body dementia, to name but a few. However, many services are providing specific support to people with Alzheimer’s disease dementia. Therefore, the aim of this study was to assess the needs of people with complex dementias and their carers, to help people live well with dementia.
Method: This study will involve four focus groups in total – two with people with complex dementias and family carers, and two with dementia care professionals. Participants will be recruited via North West Boroughs NHS Foundation Trust, carer cafes, local care homes and day care centres, as well as through the local Alzheimer’s Society. The focus groups will take place in a carer café in Wigan and will last approximately 60 minutes. Written informed consent will be obtained from participants at the beginning of the focus groups, which will be audio-recorded and subsequently transcribed.
Analysis: Data from the four focus groups will be analysed by the research team using thematic analysis. Generated themes will be compared amongst the team members and final themes will be confirmed.
Potential implications: Findings from this study will help to understand the needs and wishes of people with complex dementia, and their carers, targeted support and activities can be developed and provided to support them to live well with dementia.Summary of Results
We were only able to recruit a small number of participants due to the COVID-19 pandemic, and had to stop the study altogether.
REC name
North West - Haydock Research Ethics Committee
REC reference
19/NW/0344
Date of REC Opinion
16 Jul 2019
REC opinion
Further Information Favourable Opinion