Research study details

Summary

People who care for people living with dementia (who we refer to as carers or caregivers) need to have information and skills to manage and support the day-to-day care they provide. The aim of this study is to test the effects of using an online support package for carers called CareCoach. In other words, the study will test whether CareCoach has an effect on carer's sense of being able to care well, their mood and quality of life. We must test this before we can make it available to people across the UK. This study is part of the CareCoach Research Programme.

What is CareCoach?

CareCoach is adapted for people in the UK from a programme developed in the Netherlands (called 'Partner in Balance'). CareCoach is a self-management package designed for carers. It has been co-developed with carers and dementia experts and is made up of online learning modules which focus on helping carers develop knowledge, skills, and confidence to manage and support the care they provide a person living with dementia. Carers using CareCoach are also supported and guided by a 'coach' (health, social care or dementia charity worker).

If you are interested in this study or would like any more information, please contact 01392 674117 or email dpt.researchadmin@nhs.net

Please look at the study website for more detailed information: 

What will happen if I decide to take part?

If you agree to take part, you will be asked some questions to check that you are eligible to take part. If you are eligible, you will be asked to provide your contact information, such as your name, email, telephone number, and postal address. Then we will ask you to agree (consent) to take part and complete a questionnaire.

The questionnaire will ask you questions about yourself, your wellbeing, the care and support you give, and the person living with dementia who you care for. You can choose to complete the questionnaire online or on paper via post.

When this is complete, you will be randomly allocated to either the CareCoach group OR usual care group. The group you are allocated to is chosen at random (like tossing a coin) by a computer. Both groups are important so we can test the effects of CareCoach. People in both groups can continue to access any support they are currently receiving during the study. Both groups will be involved in the study from the time of agreeing to take part, for 6 months. The study can all be completed at home (no travel necessary). The research team will contact you according to your contact preferences, but may call, text, email, and/or write letters to follow-up with you during the study.

If you are allocated to the CareCoach group, you will be given a link and login details to the CareCoach online platform. You will also be assigned a coach. Your coach will be a member of staff from a health, social care or dementia charity organisation. They will arrange an introductory meeting with you via video-call lasting around 1.5 hours. During this meeting, the coach will help you choose online learning modules according to your needs. Following this meeting, you will be asked to work through the modules in your own time (e.g., 10-60 minutes per week) over eight weeks. The coach will be available to assist you for 8 weeks. On the final week, you will meet with your coach again via video-call for up to 1.5 hours to review your progress and experience using CareCoach. You will have access to the CareCoach online modules only until the end of the study and for 6-months after this. With your permission, the occasional meeting you have with your coach may be observed by a researcher for quality assurance and research purposes.

If you are allocated to the usual care group, you can access any local or national organisations supporting carers and people living with dementia that is normally available to you. At the end of the study, you will be offered access to the CareCoach online learning modules only for 6-months after the end of the study.

Follow ups

To test the effects of CareCoach, both groups will be asked to complete a similar questionnaire to the one you completed at the beginning of the study at two time points: around 10 weeks and 6-months after you started the study. It's very important that you complete both questionnaires, no matter which group you're in or if your caring situation changes. After you finish the final questionnaire, we will give you a £20 gift voucher to thank you for taking part in the study.