Dementia-friendly co-production

Co-production is a way to involve people who have dementia when producing or evaluating services or products for people with dementia. Find out how to do it in a dementia-friendly way.

It may be helpful to think of different levels of co-production:

• Individual level of co-production: this is where a person with dementia takes control, or stays in control of decisions about their care planning, daily living and future plans. This is often described in terms of being 'person-centred care'.
• Community: this is where people with dementia work to help services and communities. 
  • micro level: for example reviewing documents in focus groups.
  • macro level: for example developing policy and strategy.

Pros and Cons

Useful for:

• Improving and developing plans, projects or services.
• Developing integrated and personalised care which embeds social prescribing activities not delivered by statutory health or care organisations. 
• Enabling people with dementia to influence solutions for things that matter to them.
• Building stronger communities where diverse needs are understood and met.
• Building trust between people through
  • a sense of shared ownership of plans, projects and services
  • clear and transparent decision-making
  • enabling them to feel understood.

Disadvantages and risks

• Solutions will not necessarily be replicable. 
• Sharing power may challenge traditional perceptions of professionals being the experts about dementia and services, so may challenge organisational culture.
• The high value co-production places on qualitative data may be a cultural challenge for some professionals.

Costs: vary depending on the type of activity or project. You may need to budget for transport, accessible venues and related costs to enable people to be involved.

Timings: relatively time-consuming but return on investment may be good. 

Preparation

Consider: 

• Who do you want to recruit and why? Existing groups, people with particular characteristics and/or experiences.
• What reward or remuneration you can offer to people in return for them sharing their skills, experiences and ideas?
• Whether people affected by dementia, or staff, need any training before co-producing together. If they do, consider how best to adapt the learning and development approach to help people with dementia learn and apply their learning. Avoid simply putting on a training day or requiring e-learning completion that requires people to remember learning some days or weeks later. 

Ensure you have senior management support for using co-production, including to enable middle managers to allow staff time to work in this way.

How people may work together

Co-production is more about a culture or way of thinking, so can't be reduced to a list of tasks which will be the same each time. 

People will bring their individual skills and expertise. This means that people with dementia and carers may contribute more to identifying issues and insights that help build shared understanding, while professionals apply the empathy gained from this learning to develop solutions. However, they should continue working collaboratively with people affected by dementia throughout the process, for example when testing solutions as they are developed.

Agree the problem you are trying to solve, the change you want to see and how you will work together.

• Agree how the group will work together - such as using a group contract and agreeing that working on issues for the benefit of the community is different to complaining or seeking support with personal issues. 
• Agree how people would like to be described e.g. 'patient partners' or 'group members'.
• Be open and honest about financial, legal, resource and other constraints. 
• Where appropriate tweak your plans from what you had intended in the preparation stage now you have the benefit of the lived experience group members to influence the work. 

Take time to build your team and get to know everyone involved. 

• Check people have the support they need as you progress work together.
• Create an open, honest and reflective culture in which people feel able to offer constructive criticism, to feed back on what's working well and what could be improved in both progress of the co-production work and in relation to working with each other. 

Learn from people with dementia's lived experiences, and possibly those of carers and staff too.

• Use involvement methods to gather qualitative and quantitative data. For example, you might co-develop surveys, tips, or workshops together to do this. 
• Agree different roles for people. For example, some people may share personal stories at events, some people might like to co-facilitate activities, while other people may prefer to work on developing survey questions, writing blogs, sharing messages and calls to action on social media, or testing website content. 

After the activity

Evaluate by looking at what changed for people with dementia. This may be at individual and/or community level.

There may be benefits for the people who got involved such as maintaining or developing skills or knowledge that help them to live better with dementia. 

Reflect on the co-production process itself - what's worked well and what might be improved for future co-production activity with people with dementia. 

If you are working in a commissioning context, you might like to ask yourself these questions by thinking about

• What's worked well AND could be replicated elsewhere?
• Does what hasn't worked well require any operational or strategic plan level changes?
• Can learning from the co-production activity inform future contract development?