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Dementia care planning and co-production

The pioneering project to give individuals and families a greater voice in the process



Through a pioneering new research project, people with dementia and their loved ones will play a greater role in their care than ever before – and care professionals will be supported to make this happen.

NR Times finds out more from project lead Dr Inga Stewart, who discusses her ambitions for a person-centred approach to become commonplace in healthcare


“We want to get to a point where you just couldn’t imagine writing a care plan without involving the person it’s about, and the people who are supporting them in their care”

That commitment to the highest standard of person-centred dementia care lies at the heart of pioneering new research, which aims to create a new approach to care planning which could change the current face of healthcare.

Led by Dr Inga Stewart, consultant clinical psychologist, clinical research fellow and head of co-production at St Andrew’s Healthcare, the project will shine a light on the need to put the patient and their partners in care at the heart of care planning – a process in which they all too often feel sidelined.

With the support of the Alzheimer’s Society, the research will inform the development of a toolkit to help care teams actively involve those directly affected by dementia, working in equal partnership to create a care plan that takes in all perspectives on care and is as person-centred as it is possible to be.

The research project – The co-production of the care planning process with people with dementia – brings together experts in dementia through their academic, clinical or lived experience, creating a steering group with a comprehensive, 360-degree knowledge of dementia and current practices to help inform how effective change can be made.

The main issue challenged through the project – the sidelining of people with dementia in their own care – is something that is sadly quite commonplace in care settings, says Dr Stewart. But with care planning covering every aspect of their life – from what support they need with particular tasks, through to which shampoo they prefer – it is essential it is tackled.

Dr Inga Stewart

“We can see some really good practice, where the person with dementia is involved in their care plan, as are their families or care partners. But then there will be some practice where care plans are written about people, and they’re not involved at all,” says Dr Stewart.

“And I think, sadly, the latter is probably more the norm. I don’t think it necessarily comes from a bad place; I think it’s more often a lack of understanding about co-production, how you engage and involve people to really work together to create a care plan.

“Often, people think you just can’t do that with somebody with dementia.

“It might be that a person doesn’t really know where they are, they don’t know what a care plan is. But that doesn’t mean you can’t coproduce their care – they will know what they like and what they don’t like, they will know what their hopes and wishes are.

“And you can adapt your way of working and communicating with somebody to ensure that coproduction can happen.”

Co-production is a term at the heart of everything Dr Stewart and St Andrew’s are seeking to do, ensuring the person is the focal point throughout their care. And for Dr Stewart, this lies at the heart of the research, and is key to changing the future for dementia patients.

“Co-production really is a set of values, it’s about respect and genuinely listening to and taking on board what somebody else thinks,” says Dr Stewart.

“Often people think it has to be about agreement, but actually it’s about everybody having a voice. When you create these coproduction opportunities, everybody comes with their own experience.

“So you might have people who come with their experience from their professional background, whose learning will have been done academically; but their experience will be different to the lived experience of those who have dementia, or are living alongside people with the condition.

“For me, I have worked with lots of people with dementia, I’ve worked with lots of care partners and family and friends, but I have not lived with dementia, and I have not lived alongside somebody with dementia. So I don’t know what those experiences are really like.

“If we all bring all of that to the table, and we genuinely take on board all of these experiences, knowledge and ideas, then what we can co-create is really exciting. And it’s so much more than any of us could do individually.

“We’ve got to think of it in terms of levels, and what often happens is that people are co-producing but they don’t even know they’re doing it.

“So it might be that whilst you’re supporting somebody with their personal care, perhaps they’re having a shower, and you’re chatting away to them about the things that they like.

“You could be talking about their family and you find out that they have a gorgeous garden back at home, and they love to potter in the garden and they know about flowers. So then you end up speaking to the rest of the team and saying, ‘I found out something new about this person’. And that comes out in the care plan.

“So it can be happening in many forms already, but what we want is for everybody to have the opportunity to co-produce to the fullest extent they can.”

By bringing together a steering group with wide-ranging experience of dementia and living with dementia – nurse and social worker Julie Hayden; ex-football referee Peter Jones and ambassador for the Alzheimer’s Society; independent pharmacist and local Alzheimer’s Society ambassador Emma Wood; Niccola Hutchinson-Pascal, head of the co-production collective at UCL; and Professor Jacqueline Parkes, specialist in applied mental health at University of Northampton – all approaches to dementia can be analysed.

The project has created a number of practice standard statements to help guide the focus on the patient in the creation of care plans:

Practice standard statements

> I am an equal partner in planning my care

> I am at the heart of decision making

> I have had a conversation about care planning and I feel ready to start

> The language and approach is understandable to me

> People significant to me could be invited to be involved in planning my care where appropriate and acceptable to me

> I am the expert in my own experience. My knowledge and my care partners’ knowledge is respected and included

> The steps that we are going to take together to attain my aims are clear and achievable.

> We can review my care plan together at any time

“There is always room for improvement in dementia care, and through this research project, we want to bridge the gap. We want people to realise what they’re doing that is really good, but also how they can overcome some of the barriers,” says Dr Stewart.

“The practice standard statements are really fundamental, they are the basis of all of the work that we’ve done.

“We drew on what was already out there in terms of literature, and we drew on people’s lived experience, and also their professional experience, to think about what are the foundations of co-produced care planning?

“By creating this toolkit, we want to support the staff tasked with writing care plans to co-produce them with the person and their care partners. That is our focus.

“The actual toolkit itself is dementia-friendly, and could be used by care partners as well. There are hints and tips in there to help. It also has a checklist, which can be used as a self-assessment or audit tool on a broader level, to look at people’s care plans across the service. A pilot of the toolkit is currently underway at St Andrew’s, building further on the care provider’s existing commitment to co-production.

“There is already a lot of working going on in co-production, and we’re currently working on our co-production framework, which is really exciting,” says Dr Stewart.

“I think this toolkit fits very nicely into our dementia services, and this will be one of our outcome measures – we’ll be able to show just how co-produced our care plans are by using the checklist as an audit tool.

“I feel really confident about the toolkit. A lot of work has gone into it, and I hope it will help to make the cultural change we all want to achieve.”

Beyond the St Andrew’s pilot, interest is building from care settings around the country, which is informing the next stage of research.

“Right from the beginning, we have had a huge amount of interest externally, from care homes and hospital settings,” says Dr Stewart.

“We hope they will be involved in the second stage of the research, which is the multi-site research. I hope this can be an opportunity to influence practice and to influence and challenge thinking and assumptions that are out there.

“While people working in care may be innocently assuming that you cannot co-produce care planning with people with dementia, we want to show them that is wrong and how you can do things differently and better.

“By supporting them in this, and showing them and guiding them through the process, we can make change, and that is what we really hope to do.”

To get involved in the consultation, contact Dr Stewart and the team at research@stah.org.uk