Dementia is a growing concern with no simple solution and it’s a priority for health and social care.
In the current climate, the health and care systems are struggling to provide the services needed without additional costs. To understand how a local system could tackle this challenge, we are working on an initiative in County Durham that uses the principles of co-creation.
What is co-creation?
Co-creation, the ‘collaborative generation of knowledge by academics working alongside stakeholders from other sectors’ (Greenhalgh et al. 2016), aims to link the research world and the service world to help implementation of research into practice in a timely, effective and context-specific way.
As a research team we are working alongside organisations from the health, care and third sectors, people living with dementia and family carers in County Durham in a process organised in three main phases (diagnosis, design & implementation and evaluation) over a five-year period.
We started with a ‘diagnostic phase’ to map the local dementia care system across organisations and across sectors. At the same time, we interviewed people with dementia and family carers to understand their needs and whether the local provision met them. Results of the mapping exercise and of the interviews were shared and discussed in local workshops to identify potential gaps and three improvement areas for dementia care in County Durham.
Design & implementation
Sub-projects to address these improvement areas were designed and developed in the second phase. The first improvement area aims to tackle the lack of access to information reported by people with dementia and their family carers. We have co-created a short accessible leaflet about local dementia services, which is now being used by Community Psychiatric Nurses.
The second area is focused on improving out of hours services to tackle the high volume of avoidable admissions identified among people with dementia living in County Durham. We are helping with the preparation of a business case for consideration of commissioners to fund an out-of-hours bank of nurses.
The third area aims to address the ongoing information need of carers who at specific time-points (e.g. at diagnosis) receive a lot of information which may not be timely but then they struggle to find the information when they need it. To this aim we are designing an add-on feature to the primary care IT systems to allow regularly posting up-to-date information about local dementia services to people with dementia and carers.
Evaluation activities are carried out as part of the third phase of the initiative, with the objectives of understanding the impact of each intervention and of the co-creation approach.
Our learning so far
Below are five of our key learning points to date:
Fit organically around emerging issues and opportunities
We want our project to be embedded in the current dementia care system and to become part of it. We aim to avoid adding additional complexity to a system which is already complex. For this reason, we plug into existing working groups to opportunistically engage with stakeholders around those, making the best use of their time. We aim for the project to fit organically around emerging issues and opportunities. But it takes time to identify local groups, understand their scope and remit and develop relationships with their members.
Allow sufficient time
Several features of our project require a particular time allowance. Time is needed to negotiate with gatekeepers and get their buy in, which is crucial for the long term sustainability of what we are doing. Similarly, we have experienced the importance of balancing the time needed for reaching consensus among local stakeholders against need for action. Again, we expect this to pay off in the long run and to make the interventions sustainable.
The five year duration of the initiative also poses some challenges in terms of keeping up momentum across all the organisations and stakeholders involved. For example, some interventions directly involve only specific organisations, so others are temporarily ‘standing by’. We are mitigating this by circulating updates and asking feedback on the initiative from all the stakeholders involved at every opportunity, but inevitably some organisations may become more peripheral than others at some points in time.
Engaging people with dementia and family carers
Gathering together people living with dementia and family carers is not straight-forward. We tap into local organisations for advertising our events and recruiting participants. We use dementia-friendly venues with good accessibility by public and private transport. We offer to cover expenses that could be incurred with participation (e.g. we offer care replacement to allow family carers to attend our events alongside covering travel costs). Some of the requirements from ethical approval bodies are cumbersome and often act as barriers to engagement of people with dementia and family carers; for example we are required to give people with dementia ten-page information sheets, and gain up to 20 signatures for them to take part in an interview. Overall, the practicalities of organising workshops with a good representation of people remains complex.
Project team mix
Lastly, we recognise the importance of finding the right mix of competencies within the research team itself. In our case, our team comprises local project members as well as academics. The first provides local intelligence and liaison with local stakeholders, the latter gives methodological guidance. We find that the two sub-teams complement each other and bring credibility to the overall process.