What We Do
Tide has a strong history of supporting research programmes in different ways, using our combined knowledge and expertise but especially encouraging current and former carers to get involved. We advise researchers at an early stage when they are developing their ideas and as their proposals come together. Once they are approved and funded, we participate in Expert Advisory Groups and support carers to get involved through the Public and Patient Involvement (PPI) processes. We expect carers to be reimbursed for their time and expertise, as well as tide itself, and for this to be costed into research grants.
We also carry out our own pieces of research to test out ideas or gather information. Examples include the survey for our Law for Dementia Carers Project and the survey and focus groups to develop our Living Grief and Bereavement resources.
Enabling You To Get Involved
We believe in enabling our carers to give of their best; you are the experts in the care of those you are looking after or have supported in the past. Our approach is to provide coaching and mentoring to help you prepare for meetings or workshops, so that you feel confident to speak up, ask questions, and give of your experience. For example, we offer a preparation meeting for the carer members of the PPI group supporting the TIMES research into management of sleep. We also have a module in our Carer Development Programme called ‘Getting involved in research’ which we run occasionally according to need.
INTERESTED?
Research Carers group
We hold a monthly on-line meeting for any current and former carers who want to be or are already involved in research. We use it as a forum to share ideas and discuss requests for carer involvement in research programmes. If you are interested, contact us at carers@tidecarers.org.uk for further details
Current Research Programmes
Tide is currently funded to support carer involvement in four research programmes:
The SPIN-D Dementia+ network focuses on brain health, prevention and early intervention. Tide is funded for four years as a Strategic Co-production partner along with Innovations in Dementia and Liverpool Chinese Wellbeing. There will be lots of opportunities for current and former carers to get involved; if you are interested, go to spindementianet.org. and you can read more about tide’s involvement here: [link to SPIN-D second page]
TIMES research to develop a primary care intervention to help management of sleep disturbances (TIMES) Tailored management of sleep in dementia | ARC East of England (nihr.ac.uk) and the CareCoach programme to adapt a Dutch model of carer education for the UK Norwich Clinical Trials Unit (uea.ac.uk)
SPLENDID programme to explore how social prescribing can work best for people with dementia SPLENDID: Social Prescribing for people to live enjoyably with dementia/memory problems in daily life | ARC East of England (nihr.ac.uk)
Tide is advising two further potential research programmes as they design their funding bids.
Tide is proud to be a Strategic Co-Production Partner for the SPIN-Dementia+ network (SPIN-D for short). Their funding supports Margaret Flynn as Research Associate to co-ordinate our research activities. Two of our carers are members of SPIN-D’s Core Lived Experience Group; one former carer is a Co-Applicant for the programme; and members of the Research Carers group have co-authored “Questioning Carers”, one of SPIN-D’s suite of resources to help researchers involve carers effectively as equal partners. https://drive.google.com/file/d/1QGuVd2REIVN5Y3X_ytUgtWJW-mL4z6Tv/view?usp=sharing
Tide made strong contributions to SPIN-D’s first annual conference in London on 2nd and 3rd July 2025. Ruth Eley gave part of the plenary address on behalf of the Strategic Co-Production Partners and Christine Wise, former carer, co-chaired a main session. Our biggest contribution was to the Co-production workshop. Janis Cottee and Ruth Graham spoke with Margaret about their experiences of being involved in research and how co-production can be transformative – “I felt like my experience really mattered”. Janis also co-delivered, with Sam Bolam, tide’s presentation on “Making Shared Care a Reality” as an example of co-production in practice.