Living with Lewy body dementia - Stories of Everyday Experience. V1.0
Research type
Research Study
Full title
Living with Lewy body dementia - Stories of Everyday Experience: Narrative research exploring the experiences of people living with Lewy body dementia & their family carers.
IRAS ID
250094
Contact name
Allison Bentley
Contact email
Duration of Study in the UK
2 years, 9 months, 1 days
Research summary
BACKGROUND: There are different types of dementia, and Lewy body dementia is the second most common cause of neurodegenerative dementia after Alzheimer's disease. Following a diagnosis of dementia most people may be discharged from Memory clinics or Mental Health services after a short period. As the condition progresses much of the caring and nursing duties fall on their families. The result is that little is known about how people with Lewy body dementia and their families are affected by the condition. Recent government guidelines suggest health and social care professionals should adopt a 'palliative care' approach from the time of diagnosis for conditions such as Lewy body dementia. However, there is not enough information about what this entails.
AIM: To explore the experience of everyday life of people living with Lewy body dementia, and thier family carer.
DESIGN: Narrative qualitative interviews.
SETTING AND PARTICIPANTS: The interviews will take place across the East of England within the community setting (home and care home). Participants will include people with Lewy body dementia and/or a family carer.
DATA COLLECTION: A longitudinal approach of three interviews taking place flexibly up to a six month period will be completed with people with Lewy body dementia and/or a family carer. Prior to the second interview participants will be offered the choice to take photographs to explore visually the experience and impact of living with the condition. The interviews will take place together (as dyads) where possible, but due to the complexity and unpredictability of the condition, this may be with carers only.
DATA ANALYSIS: Transcripts will be analysed by combining thematic analysis and interactional analysis, exploring themes or patterns across stories. Visual representation of experience (photographs) will be interpreted alongside the spoken interview.
Findings should give greater insight into living with the condition and inform future practices and care.
REC name
Social Care REC
REC reference
18/IEC08/0035
Date of REC Opinion
5 Dec 2018
REC opinion
Further Information Favourable Opinion