Post-diagnostic support for people with dementia
Research type
Research Study
Full title
A pilot study of support networks and older people receiving support following a diagnosis of dementia
IRAS ID
193537
Contact name
Mike Fisher
Contact email
Sponsor organisation
University of Bedfordshire
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
Current policy is that people receive a diagnosis of dementia as early as possible. This creates a new population of people with dementia who are younger, more articulate and with different support needs. An earlier study by the CI (Reference: 13/LO/0929) identified that few existing studies of the views of people with dementia were relevant to his new population.\n\nThe proposed pilot will test ways of gathering the views of people with dementia on how they communicate their diagnosis to family and friends, what help they think they may need, how they negotiate this with family and friends, and how this changes over a 1 year period. In relation to people receiving an early diagnosis, the study will investigate the best way of conducting focused interviews, the use of network analysis tools (e.g. diagrams that graphically portray people’s family and kinship network), the willingness of participants to agree to three contacts during the year, and the extent to which capacity to consent to research participation is maintained.\n\nThe study is of direct relevance to Alzheimer’s Society Hertfordshire, which is contracted by Hertfordshire County Council to work in partnership with Hertfordshire Partnership NHS Foundation Trust (HPFT) to provide post-diagnosis support as part of the Early Memory Diagnosis & Support Service (EMDASS). There are 4 EMDASS teams across Hertfordshire. It will also inform the policies of other health and social care organisations that support this new population of people with an early diagnosis.\n
REC name
North West - Preston Research Ethics Committee
REC reference
15/NW/0920
Date of REC Opinion
7 Dec 2015
REC opinion
Further Information Favourable Opinion