A new report from ILC UK says that more than half of people with dementia are either undiagnosed or have no care plan. Improving dementia care and support, they say, could dramatically boost health, wellbeing – and even the economy.

The new publication by the International Longevity Centre UK (ILC), supported by the Alzheimer’s Society and the Peter Sowerby Foundation, warns that the nearly one million people living with dementia in the UK are woefully under-supported, with care and support patchy, unequal and under-resourced across the country.

The report – Living well with dementia through care and support: it’s not rocket science – uses the latest facts and figures available to argue that better post-diagnostic support, greater investment in prevention and a shift to community-based care could help people live better for longer with dementia, while easing pressure on hospitals, carers and overstretched services.

Currently, more than one in three people with dementia in the UK remain undiagnosed. Without a diagnosis, people are less likely to access support, more likely to end up in A&E, and often left to manage alone. Even after diagnosis, many receive no formal care plan and limited follow-up. In England, just over two in three people with a recorded diagnosis have any kind of care plan in place, and just one in two in Scotland. Across the UK, dementia support remains a postcode lottery.

Yet the solutions are already available. The report spotlights interventions including the PriDem model – a practical, evidence-informed approach that integrates primary care, personal care planning, and community-based support. In pilot areas, PriDem has already increased the proportion of people with tailored care plans from 37% to nearly 65%.

The cost of dementia in the UK has already reached £42 billion – and is projected to more than double to £90–£95 billion by 2040. Much of this cost is borne by families and unpaid carers, the majority of whom are women. ILC argues that better dementia care is not only the right thing to do – it also makes economic sense. Previous ILC research finds that adapting high streets and local services to be more dementia-friendly could unlock an additional £948 million a year in consumer spending.

The report calls for:

• Universal personalised care plans for everyone diagnosed with dementia
• Investment in prevention, including midlife brain health checks that improve education and ultimately early diagnosis rates
• Support for family carers, including scaling up piloted interventions like PriDem.
• Better dementia training for care workers and healthcare professionals
• More dementia-inclusive services, from the high street to the GP surgery

As Andy Burnham, Mayor of Greater Manchester, reflected at ILC’s Future of Ageing conference: “You can live well with dementia. But right now, too many people are left in a dark place – without the support or practical help they need when the journey begins.”

Professor Dame Louise Robinson, who led the PriDem research at Newcastle University, said: “Living better with dementia is not rocket science. We don’t yet have a cure – but we do know how to help people live well. What we need now is investment and political will to make that support universally available.”

David Sinclair, ILC Chief Executive, added: “We’re facing a dementia emergency – but also an opportunity. With simple, practical steps, we can help people live better for longer, reduce hospital admissions and support family carers. This isn’t a distant ambition – it’s something we can do now. It just needs action.”

Dr Richard Oakley, Associate Director of Research and Innovation at Alzheimer’s Society, said: “Dementia is the biggest health and social care challenge of our time and the devastating impact is enormous – on the lives of those it affects, on the healthcare system and on the economy, which is why we are proud to fund the evidenced-based PriDem model alongside the Peter Sowerby foundation that could radically improve the quality of post-diagnostic care.

“This model demonstrates the value of research in developing evidence-based care, significantly boosting the number of people with tailored care plans in the pilot areas and critically this work supports not only the person living with dementia but their families and carers.

“Urgent action is needed to improve post-diagnostic care to help people manage dementia symptoms and avoid ending up in crisis.

“Research will beat dementia, but it needs investment and commitment from government to provide evidence-based care for everyone affected by dementia across the UK, no matter where they are.”