Understanding unmet needs of family carers (iCARE) version 1.0
Research type
Research Study
Full title
Towards Integrated support: Understanding unmet needs of family carers at different stages of dementia (iCARE)
IRAS ID
218392
Contact name
Eneida Mioshi
Contact email
Sponsor organisation
Norfolk and Suffolk NHS Foundation Trust Research and Development
Duration of Study in the UK
3 years, 11 months, 31 days
Research summary
The present study aims to identify carers’ unmet needs at different stages of dementia by exploring individual differences and societal factors that contribute to the development of carer burden. Family carers of people with mild, moderate, or severe dementia will be invited to undergo an assessment exploring a wide spectrum of individual differences including coping skills, formal and informal support use, physical and mental health, quality of life, and care recipients’ disease severity. Carers will be reassessed with the same assessment package after a 24-month period to track changes over time.
A purposive sample of carers taking part in the basic assessment programme will also be given the option to participate in three sub-programmes until the required number of participants is reached. In the first optional programme, carers will be invited to participate in a focus group to obtain an in-depth picture of their lived experience and understand their critical needs at different stages of dementia. Carers will be invited to an individual interview in the second optional programme. We will explore in depth, individual carers perceptions of social support to understand the barriers and facilitators to access and uptake external resources. Finally, we will pilot two novel individualised interventions derived from cognitive behaviour therapy with carers experiencing psychological symptoms. In this third optional programme, carers will receive eight 90-minute sessions of individually tailored interventions that reflect their unmet needs on a weekly basis. Three booster sessions will be delivered after the completion of the final therapy session to discuss their needs for additional support.
The newly gained knowledge from this study will lead to the development of integrated support services for dementia carers that can enhance their resilience in the face of challenges throughout the disease process.
REC name
London - Hampstead Research Ethics Committee
REC reference
17/LO/0015
Date of REC Opinion
25 Jan 2017
REC opinion
Unfavourable Opinion