Carer Involvement in CareCoach
Working with carers throughout the CareCoach programme
People with lived experience of dementia care have been involved throughout the CareCoach programme. Their experiences, ideas and feedback help ensure that our research focuses on what matters most to family carers and the people they support.
We work in partnership with carers to design, improve and share our research. This helps make CareCoach relevant, practical and accessible.
What is public (or carer) involvement?
Public involvement means researchers working together with members of the public, rather than carrying out research about them without their input.
People with lived experience can help shape many aspects of research, including:
- Identifying important research questions
- Designing studies and materials
- Improving participant information
- Interpreting findings
- Sharing results with the wider community
Public involvement is different from taking part in a research study as a participant.
Our Advisory Group
The CareCoach Advisory Group brings together family carers to share their lived experience.
The group acts as an advisory panel to the research team, helping to ensure that CareCoach reflects the needs and priorities of carers and people affected by dementia.
Advisory Group members have contributed throughout the CareCoach programme, including:
- Reviewing study materials
- Advising on recruitment approaches
- Supporting co-design activities
- Providing feedback on research findings
- Helping communicate research to carers and communities
Meet our Public Involvement Lead
Geoff Fenwick is the Public Involvement Lead for the CareCoach programme.
Geoff has personal experience of supporting a family member living with dementia and is a co-applicant on the programme. He has contributed to the design of the research from the outset and works closely with the research team to ensure carers’ voices are represented throughout the programme.
Watch the video below to hear Geoff’s reflections on CareCoach and his involvement in the research. [Link to video on home page]
What do Advisory Group members do?
Members typically meet online four times a year and provide advice and feedback to the research team.
Activities may include:
- Sharing views on research plans
- Reviewing participant information and study materials
- Advising on communication and recruitment
- Helping interpret and share findings
- Identifying issues that matter to carers
No research experience is needed and members are reimbursed for their time and contributions.
What our members say
“I would suggest getting involved, in any way that suits your situation, you gain so much from it, and you know that your contributions will, in the long term, help other carers and people living with dementia in the future have a better journey.”
Anne Irvine
“Having cared for my wife Margaret, who has Alzheimer’s disease, I learnt that clear and practical advice is essential when dealing with the challenges of caring for a loved one. Time is something carers simply do not have enough of.”
Derek Brown
“I became a full-time carer for my dad and didn’t really know where to go for support. I hope that by working with this group, we can help other carers in the future.”
Joanne Jennings
Get involved
We are always interested in hearing from people with lived experience of caring for someone with dementia.
If you would like to learn more about public involvement opportunities within CareCoach, please contact us:
Email: carecoach@uea.ac.uk
For general information about getting involved in research, visit the National Institute for Health and Care Research (NIHR) website. Read more here.
What is a SUAG?
A SUAG is a Service User Advisory Group and is one of the ways patients and members of the public can get involved in clinical trials/programmes. SUAG members have a key role as expert advisors to the research team, providing their lived experience and insights to ensure the CareCoach programme is addressing key issues and concerns which will be relevant to people living with dementia, their family carers and professionals who support these groups.
What would be my role in the SUAG?
As a member of the SUAG, you may be involved in attending an online meeting with other members every 3 months. In these meetings we may ask for opinions, ideas and recommendations from the group about our research. You may also be asked to read and comment on research information leaflets or other research materials to make sure they are clear and accessible for carers who take part in our research. You may also help promote or communicate the research within your community, groups, and people you know who care for someone with dementia. This helps us reach more carers who might want to take part in our research.
The amount of time you give to being part of the SUAG is up to you and can be flexible around your commitments. No previous research experience is necessary and you will be reimbursed for your time.
Watch the video to hear Geoff’s views on the CareCoach programme and his involvement in the research by clicking here
Here are some thoughts from our CareCoach SUAG members
Derek Brown
Having cared for my wife Margaret who has had Alzheimer’s Disease for 5 years I have learnt the hard way that straight forward simple advice is essential when dealing with the challenges of caring for your loved one 24/7. Time is something you don’t have much of.
Joanne Jennings
I became a full time carer for my dad and didn’t really know where to go for support. I hope, that working with this group, it helps other carers in the future.
How can I get more information or get involved?
If you would like more information, we’d love to hear from you. Please email carecoach@uea.ac.uk or call Helen Morse (Trial manager) on 07599 926354
The National Institute of Health Research (who funds the CareCoach research programme) has some helpful information about the ways to get involved in research and how you could help change people’s lives. Read more here
