Clinical effectiveness of the NIDUS randomised control trial of a tailored, goal‐focused intervention for increasing goal attainment in people living with dementia and their family carers

Abstract

AbstractBackgroundMost people living with dementia want to remain living in their own homes and are supported to do so by family carers. We have co‐produced, with family carers of people with dementia and health and social care professionals, a psychosocial intervention (NIDUS‐family). NIDUS‐family is the first fully manualised intervention that is tailored to personal goals of people living with dementia and their families and is delivered by facilitators without clinical training. The intervention utilizes components of behavioural management, carer support, psychoeducation, communication and coping skills training, enablement, and environmental adaptations, with modules selected to address dyads’ selected goals.MethodA randomised, two‐arm, single‐blind, multi‐site clinical trial involving 302 people living with dementia‐family carer dyads. Dyads were randomised 2:1 to receive the NIDUS‐family intervention with usual care (n = 204) or usual care alone (n = 98). The intervention group received over 1 year, 6‐8 video call or telephone sessions (or face to face if COVID‐19 restrictions allowed) in the initial 6 months, followed by telephone follow‐ups every 1‐2 months to support implementation, with a trained facilitator. We will evaluate the effect of NIDUS‐family and usual care on attainment on goals set by family carers towards the care recipient living as well as possible at home, as measured by Goal Attainment Scaling (GAS), compared to usual care alone at 12‐month follow‐up. Secondary outcomes measures include functioning, neuropsychiatric symptoms of care recipients, time remaining living at home and care costs, and family carer mood, quality of life and reported abusive behaviours.ResultThe trial recruited to target, with good adherence to the intervention (85% fully adherent) and trial retention to date (87% at 6‐month follow‐up). The trial’s 12 month follow up data will be completed in early May 2023 and results will be analysed and ready to share by July 2023.ConclusionOur intervention, which we adapted to include remote delivery prior to commencement due to the COVID‐19 pandemic, aims to address barriers to living as well and as independently as possible. If effective, NIDUS‐family is potentially scalable to benefit many people living with dementia and their family carers.