Background: Communication difficulties can cause frustration, low mood, and stress for people living with dementia and their carer. Carers should be offered training on adapting their communication skills. However, it is not common for skills-based education to examine emotional aspects of care and the effect of dementia on relationships. The Empowered Conversations (EC) training course was developed in response to a gap in service provision and has been adapted to a virtual format (Zoom). It addresses the specific psychological, relationship, and communication needs of informal and family dementia carers. The primary aim of the study is to investigate the feasibility of conducting a multi-centre randomised controlled evaluation trial of EC. Secondary aims include exploring the acceptability of delivering the intervention online and examining the optimum way of establishing cost-effectiveness.
Methods: The feasibility trial uses a pragmatic data-collector blind parallel two-group RCT design with two arms (EC intervention plus treatment as usual, and treatment as usual waitlist control). There will be a 2:1 allocation in favour of the EC-training intervention arm. 75 participants will complete baseline outcome measures exploring their role as a carer, including their physical and mental health, attitudes to caring, quality of life, and use of health and social care services. These will be repeated after six-months. Participants allocated to the treatment group who complete the course will be invited to participate in a qualitative interview discussing their experience of EC.
Conclusions: The study will investigate recruitment pathways (including facilitators and barriers to recruitment), estimate retention levels and response rates to questionnaires, obtain additional evidence regarding proof of concept, and consider the most appropriate primary outcome measures and methods for evaluating cost-effectiveness. The results of the feasibility study will be used to inform the development of a multicentre randomised controlled trial in the United Kingdom.
Registration: ISRCTN15261686 (02/03/2022).
Keywords: Burden; Caregivers; Carers; Communication; Dementia; Psychosocial intervention; Stress; Training.
There are 700,000 family and informal carers for people living with dementia in the UK alone. Sixty-four percent of informal carers in England say they have limited support for the range of psychological and social needs they experience. It can be difficult to keep communicating well due to thinking and memory changes that caused by dementia. This can lead to frustration, low-mood and stress for both people living with dementia and their carers. The 6-session online Empowered Conversations course is designed to enable carers to maintain and improve good communication and relationships with those they support. Course facilitators are trained to provide specific communication techniques, ways of managing conflicts, and working with difficult emotions. The course has been tried out over the last 4-years and changes made. Feedback from informal carers indicates it is in an optimum form and we are ready to test it further in a large trial. Before this is done, it is necessary to complete a smaller ‘feasibility’ trial to check whether such a larger trial is possible. This article explains how the feasibility trial will be carried out. Our ‘feasibility’ trial will check several things. We want to make sure that carers would be willing to have an only 66% chance of receiving the course straight away, because it is essential to have a comparison group. The remaining 33% of carers would be offered the course 6-months later. We want to ensure that our design is good enough to identify any improvement in carers’ well-being, relationships and communication. We will also ask carers to take part in a one-to-one interview about their experiences of the course, including their views on the course being delivered on Zoom.
Copyright: © 2023 Eastham C et al.