Care networks from the perspectives of people with dementia - V1
Research type
Research Study
Full title
Care networks from the perspectives of people with dementia
IRAS ID
191726
Contact name
Nick Manning
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
0 years, 7 months, 2 days
Research summary
This study will examine the perceptions of people with dementia of their care networks.
RATIONALE:
• Dementia is a health and social care priority amidst population ageing. Collaboration in care networks is a key principle.
• To date, research focuses on healthcare services for people with dementia, ignoring the reality of care which is largely provided by family members and thus largely invisible to policy makers. Thus the majority experience of dementia care remains unclear.
• Of the existing studies of informal dementia care, most exclude people with dementia as participants despite the potential for their participation to produce novel findings. Exclusion from participation disempowers people with dementia and undermines knowledge generation.
• In response, this study will focus on people with dementia’s understandings of their care networks.METHOD:
• Ten care networks will be studied, each centred on one person with dementia living in the community in Derbyshire.
• Each person with dementia will be asked to identify the people (network members) whom they consider most important in their care.
• Recorded semi-structured interviews will be conducted with each person with dementia and each identified network member individually, focusing on experiences and perceptions of care.OUTCOMES:
• Improved knowledge through addressing significant research omissions: care from the perspectives of people with dementia.
• Informing services through generating novel findings about a hidden population and disseminating to relevant organisations.
• Empowerment through championing people with dementia’s perspectives.REC name
Social Care REC
REC reference
16/IEC08/0007
Date of REC Opinion
25 Feb 2016
REC opinion
Further Information Favourable Opinion