RHAPSODY Version 1
Research type
Research Study
Full title
Research and strategy for dementia in the young
IRAS ID
165053
Contact name
Heather Gage
Contact email
Duration of Study in the UK
2 years, 11 months, 31 days
Research summary
RHAPSODY (Research and strategy for dementia in the young) is a three-year project of the EU Joint Programme Neurodegenerative Disease Research (JPND) in six countries: France, Germany, the Netherlands, Portugal, Sweden and United Kingdom. The consortium includes partners from academia and industry as well as a patient and carer advocacy organisation.
Background: Dementia is commonly viewed as a problem of old age, but may occur earlier in life. Young-onset dementia (YOD) (symptoms occurring before the age of 65 years is associated with specific problems for patients and family caregivers, including impacts on marital relationships, premature retirement and reduced family income and puts a heavy burden on caregivers.
Existing health and social care structures often fail to meet the needs of this patient group. Mainstream dementia services designed for the elderly are inappropriate for younger patients. RHAPSODY will evaluate their service needs and a supportive intervention for carers in four stages: 1. Evaluation of the policy and information environment around care of people with YOD and carers; 2. Assessment of their individual needs using of focus groups; 3. Use of focus group findings to design a learning course for carers; 4. Testing this learning course in a pilot randomised control trial.
This ethics application refers only to the conduct of the focus groups (stage 2). A linked application will be submitted in due course for the pilot RCT (stage 4).Aims
1. To explore the experiences, care needs and access to services of people with YOD and their informal caregivers and to compare these findings across participating countries.
2. To assess caregivers views about an online intervention.Methods: Two focus group discussions involving 5 - 8 carers (Guildford and Birmingham).
Impact: The results of the focus groups will inform the design of the internet-based, multimedia, interactive learning course for carers.
REC name
Wales REC 7
REC reference
14/WA/1218
Date of REC Opinion
5 Nov 2014
REC opinion
Favourable Opinion