People living with dementia as co-researchers in the co-production of care planning

St Andrew’s Healthcare is a charity providing mental healthcare who support people across a number of services, including Lowther Dementia Village that was set up for people living with dementia who need a period of hospital care. This research programme which is about co-producing research into care planning is running as a result of a partnership between St Andrew’s Healthcare and the Alzheimer’s Society.

This blog has been co-written by all members of the research programme steering group, including people with living, and learnt experience of dementia.

Co-producing care planning

For us as a steering group, co-production means working together to do something. It is about treating each other with respect and equal value. It is also about people with different experiences and ideas coming together to make things better for everyone. People living with dementia and their care partners can often find themselves side-lined. Being in hospital can also mean that a person can become isolated from their support networks. Needing a period of care in hospital when also living with dementia can make a person even more vulnerable to not being heard.

When someone moves to a care home or is admitted into hospital, their care plan states their care and support needs and outlines how these needs can be met. Care plans are vital for the wellbeing of the person, and important to everybody. This includes the clinicians, nursing staff, care staff, the person and their partners in care. Government guidelines recommend that people are involved in their own care. However, there is little help available for healthcare teams on how to do this effectively and so co-production of care plans can feel tricky at times.

We want people living with dementia, and their care partners, to create better outcomes for themselves through co-producing their own care plans. We need care teams to make quality care plans happen. Care plans must be fit for purpose. It is necessary to spend time getting to know the person; only then can you create truly person-centred care. It is essential to spend time discussing and creating care plans with people with dementia; spend time to save time!

“This is the way forward for people going into hospital!” Peter, Steering Group member

As part of this programme, we are developing a new toolkit to help care teams involve people with dementia in writing their own care plans. Once developed, the toolkit will be tested at St Andrew’s. When completed, the whole toolkit will be freely available to services and people living with dementia up and down the country.

Meet the Steering Group

Hi, I’m Peter, and I am an ex-football referee with a keen interest in sport. I am proud to be an ambassador for the Alzheimer’s Society and strongly believe a diagnosis does not mean you cannot live well with Dementia. I actively get involved with opportunities to support those living with Dementia. I have experience of being in hospital with Dementia and seen the pitfalls of not having a patient plan in place. I do not want others to have the same experience and so I am involved in this project to ensure care is provided during a hospital stay that is supportive for people with a diagnosis of Dementia.    

Hi, I’m Julie. I have a love of the Arts in particular; I enjoy going to the theatre. In the past few years, since being diagnosed with dementia, I have started writing poetry.  This totally contradicts my nurse training of years ago where we were taught to believe after a person developed dementia, they were not capable of learning new skills. 

It used to be thought dementia care had to be arranged for the person - they could not be an involved party. Now dementia care policies around care are moving much more towards co-production, with the realisation people don't lose capacity upon diagnosis. It is about recognising and making the most of someone's abilities and not focusing on their disability. This is what drew me to the project.

It is my hope that the work being done by this project, will later be expanded to more settings than where the project is currently based.

Hi, I’m Emma. I am passionate about supporting people living with dementia. I work as a prescribing pharmacist in GP practices and previously as a care homes pharmacist. I have volunteered for the Alzheimer's Society for eight years and was approached by Inga following my involvement in the Dementia Information and Awareness Session in General Practice project. When Inga explained the aim of the project, I volunteered to be part of the steering group and encouraged the Alzheimer's Society to partner with St Andrew’s on this much needed project.

In between the main steering group meetings, I meet virtually with Peter and Julie to recap on the last meeting, listen to any feedback and address their questions.

Working co-productively has enabled me to get a more informed understanding of the process of effective care planning. This project will produce a toolkit for co-producing care plans in an inpatient setting. However, the toolkit and its founding principles also has the potential to be applied to other care settings to support the wider use of co-producing care plans with people living with dementia.  

Hi, I’m Niccola. I’m part of Co-Production Collective, a community of people with both living or lived and learnt experience coming together with a passion for co-production. We are co-produced ourselves and support others to work in this way. I got involved in this project because it is a great piece of work and because I feel it is important to further amplify the message about co-production and the value of working together in equal partnership for equal benefit – pieces of work like this one do just that. I really enjoy being part of the team and working together to achieve our aims. I’m really looking forward to seeing where we end up and what we develop!

Hi, I’m Jackie. I am an experienced mental health nurse and a Professor at the University of Northampton (UON). I am Founder and co-lead of the Northamptonshire Dementia Research & Innovation Centre at UON.  My research focus is on developing and implementing person-centred care pathways. I work extensively with local organisations to evaluate health and social care services, including community-based interventions for people living with dementia. I am Chair of the Northamptonshire Dementia Action Forum and Chair of the Leicestershire Dementia Action Alliance.

I have established four evidence-based community-based social groups for people with dementia; the Forget-me-nots Social Young Onset Dementia (YOD)Group in Northampton (2013-ongoing), Qualified by Experience (QBE) for former carers, the Post-diagnostic Support Unity DEM Centre (2018-ongoing) in Northamptonshire and the Lutterworth Share & Care Group for people with dementia and their carers in South Leicestershire (Jan 2015-ongoing).  I am passionate about involving people with dementia at any stage of designing, implementing or evaluating research, teaching or consultation projects. My current project called the Dementia Experts for Involvement Network-Young Dementia (DEfIN-YD) is funded by the Wellcome Trust, and its aim is to set up a national network of Public and Patient Involvement Groups for people with a younger onset dementia. 21 members meet online monthly in three regional groups to discuss research ideas, and identify opportunities for involvement in local, national or international projects.

Hi, I’m Inga and I am co-ordinating this research programme. I am a Consultant Clinical Psychologist and Clinical Research Fellow at St Andrew’s. I have worked with and learnt so much over the years from people living with dementia. I am resolute in my view that care must be person-centred and as collaborative as possible for that person and their care partners. I am also passionate about amplifying the voices of people with dementia in both their own care and in research through co-production.

I have really enjoyed getting to know all the steering group members, who bring a range of expertise to the research programme from both living experience and training. I have already learnt so much that has influenced me as a professional, a researcher and ultimately as a person.  

We have been learning about co-producing research as we go and have developed our approach to fit the needs of our members. As a facilitator, I have learnt to have a plan but also to create space for everyone to share their ideas; if this takes us down a different equally important path then that is okay as we can always follow-up later! We can also find ourselves arriving in unexpected places, and that is so rich and exciting. What has been amazing has been experiencing the creativity that has bloomed from our fluid approach. I believe this process has been a true example of equal partnership for equal benefit, and I am so excited to see where it takes us in future.

Our Practice Standard Statements

As part of the toolkit we are working on, we are really proud to have been involved in developing these Practice Standard Statements together. We think they underpin the values of co-production of care planning. These standards are inclusive and respectful of all those affected by dementia. They stand for how care plans should be written in full partnership between the person who the care plan is being co-produced with, and all their involved care partners and their care team.

 
1. I am an equal partner in planning my care.      
 
2. I am at the heart of decision making.
 
3. I have had a conversation about care planning, and I feel ready to start.
 
4. The language and approach is understandable to me.
 
5. People significant to me could be invited to be involved in planning my care, where appropriate and acceptable to me.
 
6. I am the expert in my own experience. My knowledge, and my care partners’ knowledge, is respected and included.
 
7. The steps that we are going to take together to attain my aims are clear and achievable.
 
8. We can review my care plan together at any time.

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What next?

Our next step is to share our Practice Standard Statements within the dementia community and to gain feedback from people with experience of living with, supporting or working with someone with a dementia diagnosis.

We are also working on a checklist that lists indicators of co-produced care planning, as well as hints and tips. How would I know I was meeting the standards? How would l know I was co-producing? Well, these will be the next questions that we will tackle as a Programme Steering Group.

The Practice Standard Statements, the Checklist and the Tips will make up the toolkit.

Where can I find out more?

If you would like to find out more about the co-producing care planning with people living with dementia research programme, including if you would like to be involved in the consultation, you can contact Dr Inga Stewart via email at Research@stah.org