David Wilson-Wynne of the University of Stirling’s Dementia Services Development Centre argues that dementia care should be person-led, not person-centred.
As another Dementia Awareness Week comes to an end, the disease and the stigma around it have once more been in the spotlight. But behind the fundraising and the lessons on how we can all learn to be more dementia-inclusive, one thing occurs to me: are we thinking deeply enough about the individuals with dementia?
We have all heard about person-centred care, a concept which began in the 1950s when U.S. psychologist Carl Rogers used the term to describe building a relationship of trust between therapist and patient so that the latter can fulfil his or her potential in life. The idea was developed in the 1970s by US psychiatrist George Engel, who introduced the concept of the biopsychosocial model of health as an alternative to the traditional, biomedical model.
This concept then became central to dementia care provision and policy when Professor Tom Kitwood introduced the concept of ’Personhood’, which reinforced the importance of practitioners placing people living with a dementia at the centre of our practice, recognising them as unique individuals.
Since then, education and training around person-centred care has been part of the health and social care sector for many years, with NHS boards, private care companies and even governments putting person-centred care principles at the heart of their policies.
In 2025, do we feel that person-centred care is really happening? Or do we just say it, with good intention, or because everyone else says it? How do we evidence it? And how do we prove consistency?
Person-centred care talks of “placing the person at the centre of our practice, supporting them with decision making, helping develop care plans”. But what if, just for a moment, we removed them from the centre and placed them in front? What if we let them lead the way, knowing we are behind them, to guide and support when they want us to? The fundamental point to always remember is that the person leads in all aspects of their care. This includes decision-making, care delivery, and transitions, for example to another care facility or setting.
A person-led approach
I believe that dementia care in the U.K. needs to undergo a significant paradigm shift, from a person-centred model to a person-led one. Empowering individuals with dementia to lead their care is not merely an ethical imperative but a practical strategy that enhances well-being, preserves dignity, and improves quality of life.
A person-led approach is already happening when it comes to designing for people with dementia. At the University of Stirling’s Dementia Services Development Centre, we have long advocated for and researched the importance of including people living with a dementia in the development and production of environments. They share their thoughts and opinions, guiding designers, so that we can evidence that their environments and the products they use to help them are designed by them.
Can we say the same for dementia care?
Ask yourself these three questions:
1. If you work in a care home, are the residents given the opportunity to change the make-up of the environment? Are they included in any changes to the design? How much control do they have over their environment, the people in it and when are where they want to be? And yet we expect them to live there, with no issues, no complaints and have a good quality of life.
2. If you work in a hospital, are patients in control over routines? Can they adopt the same routines they have at home? What influence do they have over their environment? Can they choose to leave for fresh air at any time? Yet we expect them to be “compliant with care”.
3. In their person’s own home, do they choose who comes in and out, especially when receiving care? Do they choose when? Are they still empowered to make decisions relating to their own home environment? And whose home is it anyway? Who is the space owned or occupied by?
The concept of person-led care moves beyond task-based or institution-centred models, instead prioritising: individual preferences, values, and life history; emotional and social needs alongside medical ones; empowerment and autonomy, even as cognition declines.
The notion of person-led care is not a new one, and evidence shows it works.
A 2020 BMJ study found person-led approaches reduced agitation in 68% of dementia patients (Livingston et al., 2020). A report by Alzheimer’s Society UK found that individuals in person-led home care stayed 18 months longerin their communities (Alzheimer’s Society UK, 2021). That suggests potential cost savings to the NHS.
Dementia care in the UK has traditionally been task-focused, often neglecting the individual needs and preferences of those living with the condition. A shift towards person-led care – tailored to the person’s history, values, and choices – is essential for improving quality of life. The emphasis is on dignity, autonomy, choice and control, with the aim of enhancing a person’s quality of life and the focus on understanding the person, beyond their diagnosis
So how can it happen?
Its starts with education around the principles of person-led care – what I call the four C’s:
Choice – Do we really give people living with a dementia choice at all stages of their journey, advocate for it, and empower them to make the choices? Often the choices happen up to a certain stage, and then choices are taken away from them.
Control – Who is truly in control in the person’s journey? Are they, are we? Often people living with a dementia feel they are no longer in control of their lives or the decisions they make, so control is crucial to success with person-led dementia care.
Consistency – Are we consistent in our practice? What message do we send to the person living with a dementia?
Confidence – Having the confidence to advocate on behalf of a person living with a dementia, regardless of care culture, policy or what is regarded as ‘routine practice’.
There are some obvious areas for exploration. Person-led dementia care requires innovation in practice, the development of new frameworks, and policy change. It throws up practical issues, particularly when it comes to changes in a person’s capacity. And it requires mirroring right up the chain, to working groups and think tanks.
Let’s visualise what it could look like. We have used Artificial Intelligence to generate the images below, to illustrate the point.
Generated by AI
This picture shows person centred care in action. The gentleman is at the centre, with people all around him. Yes, the picture is reassuring and comforting, but is it empowering?
Generated by AI
Here we see the same gentleman but showing a completely different presentation. To me this image says, ‘It’s my life, it’s my diagnosis, I am in the driving seat, I will lead and you will follow.’ It says to me that at any point the gentleman can turn around and seek help, knowing people are there.
This is person-led care and in 2025, this is what we should be making part of our everyday practice.
Lastly, after reading this article, I want you to Google “person-led dementia care”. What happens? Do any results come up? Or does it default to something else?
Person-led dementia care is already a topic for discussion, but the concept needs strengthening and defining and then put into action – with my four Cs underpinning it. I believe it’s something we must all get behind, to not only empower people living with a dementia but continue to raise awareness about this disease for everyone.
References
• Alzheimer’s Society UK. (2021). Dementia: Aiding Independence.
• Kitwood, T. (1997). Dementia Reconsidered: The Person Comes First. Open University Press.
Notes
Images used in the body of this article have been generated using AI.