Current project

This large trial has two main aims, to find out: 1) if internet-delivered self-help Acceptance and Commitment Therapy (online ACT) for family carers of people with dementia is helpful in reducing anxiety and affordable; 2) how online ACT can be successfully delivered to diverse carer populations and in different healthcare settings

Family carers are at higher risk of anxiety and depression. Offering treatments online improves availability for people who have mobility problems, live remotely or cannot leave home. This makes it more accessible to everyone and easier to provide, so could be rolled out nationally, reducing inequalities in access to care.

We conducted a first study to explore if we could deliver ACT for family carers of people with dementia online within GPs and NHS mental health services, and family carer views of it (acceptability). This was successful and more than 100 potential participants were referred to the study in just six months. Thirty-three eligible participants received online ACT, more than originally planned. We now need a larger trial involving enough carers to establish whether online ACT can reduce carer anxiety and is affordable, and whether it should be widely rolled out in the NHS.

Phase 1: Using feedback from the first study we will refine online ACT with Patient and Public Involvement input so that it is more acceptable to carers from ethnic minority groups. We will test the refined programme with a small group of carers from ethnic minority groups and make further improvements if needed.

Phase 2: We will recruit 496 family carers with anxiety, as that is the number we need to be sure that online ACT is adequately tested. Recruitment will target community groups, and GPs and NHS mental health services with a specific focus on underrepresented people from ethnic minority groups. This is a randomised trial, where a computer allocates half the people to intervention and half to control group (standard care). People in the online ACT group will be asked to complete the intervention at their own pace with feedback from the therapist to support them for each completed session. Participants in both groups will be asked to complete questionnaires assessing anxiety and depression before and after the intervention and three months after that. We will also interview participants, therapists and clinicians involved in recruitment to gain in-depth insights into their views on the intervention and its implementation.

PPI members are part of our research team, involved in every part of the project. PPI members from ethnic minority groups suggested including one-to-one interactions with the therapist via telephone or video call would make the intervention more acceptable and accessible. We will try this during Phase 1. We will also take up PPI members suggestions of broader recruitment strategies such as involving places of worship to maximise recruitment of participants from ethnic minority groups.

We will hold a national event with our PPI members for health and social care services professionals, people with dementia and their carers, to share our findings. If online ACT is effective, we will organise a workshop where key stakeholders will co-produce a roll out manual outlining for wide NHS use.