A randomised controlled trial and feasibility study of the effects of an e-health intervention ‘iSupport’ for reducing distress of dementia carers, especially in the ongoing pandemic of COVID-19.

Background: Most of the 850,000 people living with dementia in the UK are cared for at home. Caregiving is known to have a detrimental effect on physical and mental health. Covid-19 has meant that many older people have to self-isolate, placing increasing pressures on carers. NICE recommend informal carers of people living with dementia should be offered training and psychoeducation to help them develop care skills and manage their own physical and mental health. Research question: Is carer distress significantly reduced in participants allocated to receive the iSupport e-health intervention compared to carers allocated to a control group? Objectives 1)To estimate the clinical and cost-effectiveness of the iSupport intervention, compared with brief advice 2)To undertake a process evaluation of the barriers and facilitators to the implementation of ‘iSupport’ at scale/ 3)To explore the feasibility of adapting iSupport for young carers Intervention: iSupport’ is an internet-based psychoeducation skills development intervention. It consists of five themes and accompanying exercises; (i) introduction to dementia; (ii) being a carer; (iii) caring for me; (iv) providing everyday care; and (v) dealing with behaviour changes. Each session takes approximately 5-15 minutes. Carers can construct their own personalised plan and access which sessions they feel are most relevant to them at that point in time. Design: Individually randomised two-arm controlled trial with health economic evaluation and nested process evaluation. A separate non-randomised feasibility study of adapting the intervention for young carers. The research will take place with carers living in the UK. The study will start 1.01.2021 and run for 36 months. The RCT will recruit 356 informal carers (aged 18+) of a person with dementia, caring at least weekly at home for at least 6 months. The carers must self-identify as experiencing at least some stress, anxiety or depression. Participants assigned to the comparison group will receive information about dementia developed by the Alzheimer’s Society. The feasibility study will involve 30 carers aged 11-17. The primary outcome will be reduction in carers’ distress, as measured by the Zarit Interview (ZBI). Secondary outcomes assess reductions in depression (CESD-10), anxiety (GAD-7) improvements in resilience (RS-14), sense of competence (SSCQ), quality of the carer-patient relationship (QCPR), increases in dementia knowledge (DKAS) and the EQ-5D-5L. Impact: This will be the first study in the UK and the first in an English-speaking population of a globally targeted e-health intervention for dementia carers. iSupport may be especially important in the current climate of distancing and isolating, and benefit the mental health of dementia carers in the UK, who may feel better able to provide care. New knowledge regarding what may enhance or hinder the implementation of iSupport will be of benefit to our collaborators at the WHO by informing the international implementation of iSupport. In the long term, we envisage sustainability with ‘iSupport’ embedded and recommended as part of care packages in the UK. Given that there are 850,000 people diagnosed with dementia in the UK, and most of them live at home supported by a family member or friend, the number of carers that could benefit is substantial. This may lead to reductions in care home admissions and reductions in health and social care costs, benefiting the economy.