Adapting CareCoach for the UK
What was the aim of this study?

The aim of this study was to adapt CareCoach so it would meet the needs of family carers and dementia care services in the UK.

We worked closely with carers and healthcare professionals to understand what was helpful and what needed changing.

This work also included a dedicated study to develop and adapt support resources for children and young people affected by dementia. See below to learn more.

Who took part?

Family carers of people with dementia and dementia care professionals worked with the research team to review and adapt CareCoach for use in the UK through interviews and workshops.

What did participants do?

Participants took part in interviews and workshops to help adapt CareCoach for use in the UK. They reviewed CareCoach resources, shared their experiences of caring for someone with dementia, and discussed what they found useful, unclear, or missing. They told us:

• What they did and didn’t like about the CareCoach online resource
• If the right words were used
• What they thought of the videos
• If the information and activities were useful
• What they would change and how

How were the findings used?

The research team analysed the interview and workshop discussions to identify common themes and priorities.

The findings helped us understand:

• What carers need most after a dementia diagnosis
• What might help people use CareCoach
• What barriers could make it harder to use
• How CareCoach could fit into existing dementia care services

The findings were used to refine the programme and develop training for CareCoach coaches.

What was the outcome?

A UK version of CareCoach, developed with carers and dementia care professionals to ensure it is relevant, practical and acceptable for people using dementia services in the UK.

The findings are published and can be accessed here.

Reference: Scheibl F, Boots L, Eley R, Fox C, Gracey F, Harrison Dening K, Oyebode J, Penhale B, Poland F, Ridel G, West J, Cross JL
Adapting a Dutch Web-Based Intervention to Support Family Caregivers of People With Dementia in the UK Context: Accelerated Experience-Based Co-Design
JMIR Form Res 2024;8:e52389 doi: 10.2196/52389

Adapting CareCoach for Children and Young People

Some children and young people are affected when a parent, grandparent or other family member lives with dementia. As part of the CareCoach programme, we worked with young people and stakeholders to create a video resource so they are relevant, engaging and appropriate for younger audiences.

What we do?

We invited children and young people aged between 4-15 years olds, and their parents, to online workshops with an animator. In the workshops, the children and young people were asked to:

• Share their experiences of having a family member with dementia
• Look at drawings and suggest changes to language, content and design

What was the outcome?

A dementia support animated video for children and young people.

We hope to share the video with the public soon.