INSTILLED Study
Research type
Research Study
Full title
INSTILLED (Implementing NIDUS Support To Individualize Living Well with Dementia) Study
IRAS ID
347361
Contact name
Jessica Budgett
Contact email
Sponsor organisation
Queen Mary, University of London
Duration of Study in the UK
2 years, 5 months, 28 days
Research summary
Why?
Most people living with dementia want to stay in their own homes for as long as possible, but they and their family carers need more person-centred, effective support. We supported 302 people living with dementia and family carers in the NIDUS-family trial to set goals around their individual priorities and needs for living as well as possible at home. They met with a therapist 6-8 times over 6 months, for an hour each time, to receive support sessions (from a manual which we developed) tailored to their personal goals. We found that this support helped families achieve their goals.
What?
We want to find out whether and how this new way of providing support linked to personal goals works in diverse health and social care community services in England, and how we can use it to make a positive difference to many people with dementia and their families. The support sessions will need to be adapted for each setting.
How?
Phase 1: We will hold focus groups and interviews with experts through lived, academic and professional experience to plan how to adapt NIDUS-family to different settings; primary and secondary, health and social care in urban, coastal, and rural places.
In Tower Hamlets, we will hold focus groups and interviews to adapt NIDUS-Family for the Bengali community. We will try out the new version of the manuals with 3-4 families from the Bengali community.
Phase 2: Local therapists from each participating service will deliver NIDUS family to 96 people with dementia and their family carers. We will explore implementation, how it can support families to meet goals they set and improve their life quality, and how much it costs to deliver.
Phase 3: We will hold workshops within each service to understand ongoing implementation needs and plan for sustainability.
REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
24/LO/0843
Date of REC Opinion
11 Dec 2024
REC opinion
Favourable Opinion