CARECOACH Summary

Research on carer interventions has found statistically significant but small effects on self-efficacy, sense of competence, decision-making confidence and depression. Caregiver burden was reduced in some studies but not all and qualitative data indicated less isolation and increased knowledge about dementia and coping.

Overall, e-health interventions were found to have positive effect on carers’ well-being, particularly when information could be adapted to individual needs and when links were generated among carers.

Methodological heterogeneity and issues relating to quality have been highlighted. Study limitations included poorly defined aims, no control groups and short follow-up times. Furthermore, multiple outcomes, including general mental health, depression, anxiety, stress, burden and social support, were not always fully analysed or reported. There has been a lack of methodological quality and a need for randomised controlled studies to provide robust evidence. The need for future research to focus on linking outcome measures with aims and ensuring studies were powered to return significant results so that effectiveness could be evaluated has also been highlighted.

The CARECOACH programme has been developed to address these issues and will provide much needed evidence on the impact of a promising intervention, blended care (e-health and coaching) for carers of people with dementia.

Preliminary work will establish how the PiB intervention should be adapted for UK settings, the best implementation strategy and whether implementation is feasible in the UK prior to an efficacy trial. Longer follow up will determine if self-efficacy improves and is sustained with PiB UK. This is critical to all carer interventions in dementia and has yet to be achieved in online interventions.

Carecoach Aims to:

• Adapt PiB for the UK cultural context
• Test if it is feasible to implement in the UK
• Test the effect on outcomes for carers of people with dementia
• Develop pathways for widespread implementation

Programme Objectives:

• To adapt Partner in Balance (PiB) from the Netherlands understanding how to translate it for the UK setting focusing on acceptability and usability;

• To involve service providers and carers in co-production to develop implementation strategies that will enable the programme to be integrated into existing care pathways;

• To investigate the feasibility of implementing PiB in the UK;

• To undertake a feasibility trial to test implementation, deliverability, uptake and outcome measures for UK settings;

• To undertake a full-scale trial of efficacy;

• To disseminate findings widely to promote the programme, optimise access and encourage implementation.