The Persistent Disconnect in Dementia Care Planning: Why Co-Production Still Falls Short

This blog post is based on an article published in Social Policy and Society by Inga Stewart and Maria Livanou.

Drawing on more than 20 years of clinical and research experience in dementia, we observe a troubling and persistent theme: although people living with dementia are legally entitled to have a say in their treatment, they are rarely included in decisions that directly affect their lives.

This lack of involvement spans everything from care planning to being asked about their preferences, routines, values, and beliefs. Too often, the healthcare profession appears to operate on the assumption that a diagnosis of dementia automatically means a person lacks capacity. This is simply not true.

According to the Alzheimer’s Society, there are around one million people aged 65 or over living with dementia in the UK, alongside more than 70,000 people with young onset dementia.

Dementia describes a group of diseases that cause progressive damage to nerve cells in the brain, affecting memory, language, perception, problem-solving, and behaviour. Globally, it is the seventh leading cause of death and a major cause of disability. Yet despite these stark figures, we remain some distance from placing people with dementia at the forefront of their own care.

Why Patient Involvement Still Falls Short

This gap between principle and practice is what led us to focus the most recent phase of our research on the disconnect between service providers and the people who actually live with dementia. Our research and clinical experience show that many people with dementia want to be involved in their care planning. The evidence also indicates that, with the right support, people with dementia can meaningfully participate in these decisions.

The same is true for unpaid carers, who often hold vital knowledge and can become genuine partners in care. Their insight is not an optional extra; it can be essential to understand the person behind the diagnosis.

Co-production: Principle vs Reality

This involvement is commonly referred to as co-production. But co-production is not simply a conversation or a courtesy. It is an acknowledgement that what a person knows about themselves – and what their loved ones know about them – is itself a form of expertise.

Their insight is just as important as clinical knowledge, and it should shape decisions about their care. Co-production means recognising that people with dementia are not passive recipients of care but active participants with preferences, histories, and identities that matter.

Unfortunately, our review of the literature found that co-production is still far from embedded in practice across the UK.

From Legal Right to Everyday Practice

For the study on which this blog post is based, we examined legislation, policy, and guidance in England relating to co-production in dementia care planning. We found clear evidence that many people feel treated as passive recipients rather than active participants in decisions about their health. This is despite the fact that the UK Care Act 2014 explicitly states that ‘everyone should experience control in their own care’. The law is clear, yet the reality often falls short.

Although we suspected we would uncover these findings, it was still disheartening to see them confirmed – particularly given the strong emphasis placed on person-centred care across health and social care policy.

The gap between what should happen and what actually happens is not just a technical issue; it is a human one. When people with dementia are excluded from decisions, we risk stripping away their autonomy, dignity, and sense of self at a time when they need it most.

Our conclusion was clear: healthcare professionals must do better at involving people with dementia in planning their care. We must see them as people first and patients second. They have the same rights as any adult, and a dementia diagnosis does not diminish those rights.

It should not mean being side‑stepped when decisions are made about what they can still do, or how they wish to be supported as their condition progresses. Even when someone’s cognitive abilities change, their values, preferences, and identity remain deeply important.

However, it would be unfair to place all responsibility on clinicians. We also identified that the guidance given to service providers on how to deliver co-production is often unclear or inconsistent. Without practical, accessible support, even the most committed professionals may struggle to implement co-production meaningfully. The intention is there, but the tools are not always provided.

This is why we are calling for clearer, more actionable guidance to help healthcare professionals deliver co-production in the way the law intends. Training, resources, and organisational support are essential if we want co-production to move from aspiration to reality. It cannot be left to individual goodwill; it must be embedded in systems, processes, and culture.

Making Co-production Work in Practice

At St Andrew’s Healthcare, important steps are already being taken to strengthen co-production in practice. Many people receiving care live with complex mental health conditions, including dementia, and clinical teams actively involve them in shaping their care. The organisation has also introduced a Co-production Framework designed to support equal partnership between staff, patients, and carers. This approach places the person with the diagnosis firmly at the centre of care, helping ensure that treatment aligns with their preferences and needs.

The framework is accessible to staff, service users, and the public. It provides a clear structure for service-level quality improvement plans, outlining priorities and measurable criteria that define what good co-production looks like. It also establishes the infrastructure needed to support, monitor, and deliver high-quality co-production initiatives, underpinned by robust governance.

If we are serious about improving dementia care, then co-production cannot be optional. It must be the foundation of how we work. People living with dementia deserve nothing less. Their voices are not just relevant – they are essential. And until we fully recognise that, we will continue to fall short of the compassionate, person-centred care they have every right to expect.

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Reference

Stewart, Inga, and Maria Livanou. 2025. “Care-Planning Co-Production Legislation, Policy and Guidance Implications for People Affected by Dementia in England: A Scoping Review.” Social Policy and Society: 1–30. doi: 10.1017/S1474746425101164.

About the Authors

Inga Stewart is Consultant Clinical Psychologist at St. Andrew’s Healthcare, U.K.

Maria Livanou is Senior Lecturer in Child and Adolescent Psychology Education at King’s College London, U.K.