Ministers must act now to tackle UK's dementia crisis - families call for urgent action

Families across Britain are calling for action to tackle the dementia crisis, demanding a formal declaration of a national health emergency as the scale of suffering continues to rise. Dementia is a devastating reality facing one in two Brits who will either develop the disease or care for someone who does.

Its impact is now so widespread and devastating that 57% of UK adults, and a huge 74% of multi-generational carers, say it must be officially recognised. With dementia now the leading cause of death in England and Wales - responsible for more than 11% of all deaths in 2023 - the numbers are only heading in one direction. Yet there remains no cure, limited treatments, and inadequate investment in research.

Campaigners, carers and experts are urging ministers to act now, with 77% of adults backing the introduction of a national dementia screening programme. And along with so-called multi-generational carers, those juggling work, children and caring for ageing relatives, they argue early diagnosis could be life-changing, giving families the chance to plan ahead, seek support and maintain a better quality of life for sufferers.

At the moment, experts say tests aren't accurate enough to support a screening programme, but blood tests show promise for the future.

By Martin Jones, CEO of Homes Instead

The cost of dementia to the UK is £42billion, and is forecast to more than double to £90billion by 2040. And when it comes to dementia care, much of the burden is carried by ordinary families. By investing in early intervention, community support, and flexible, personalised care models, we can avoid costly crisis interventions and better meet the needs of those affected.

Dementia is not just a healthcare issue - it's a social, economic and moral challenge. The government's current response is falling short. We must stop seeing dementia as an inevitable part of ageing and start treating it as the national health emergency it has become. That means investment and a wholesale rethink of how care is delivered. The message from families is clear - they cannot wait any longer.

Dementia is not just a private pain behind closed doors - it is a growing public health, economic, and social crisis. Unless we invest in screening, care, and research now, the cost - in lives and livelihoods - will only continue to soar. The British public has spoken. Now, it's time for the government to take action.

Families add they are being left to shoulder the burden alone with shocking figures from home-care provider Home Instead's New Ageing Index revealing more than a third of carers (37%) have had to give up work, and 30% have either downsized or sold their homes to cope with care costs and demands.

Nearly half (45%) say they are struggling financially, and three- quarters (76%) want a dementia care allowance to support families.

According to the research, 80% of UK adults say government must urgently increase research funding.

Behind these statistics are millions of heartbroken families - and the toll is taking a critical hit on both emotional wellbeing and the economy. New figures reveal that 38% of all carers say they can no longer work as much as they used to.

That figure rises to 57% among multi-generational carers,a third have left the workforce altogether due to care responsibilities, and the result is a double blow to family finances and the country's economy, as skilled workers leave their jobs and income evaporates.

By David Thomas, head of policy and public affairs at Alzheimer's Research

Getting a formal dementia diagnosis is a crucial step - it helps people plan, access care and support, and take part in research. While there's progress - like tests analysing speech, eye changes, or certain proteins in the blood - these tests aren't advanced enough for a national screening programme.

Blood tests show real promise. They can indicate whether someone is likely to have Alzheimer's disease, but they can't diagnose the disease on their own. High levels of Alzheimer's-related proteins can also be caused by things like kidney issues or body weight, so results need interpretation by specialists and need to be used alongside tests for other symptoms, like memory problems. Also, before a screening programme can be rolled out, we need to understand why some people with early biological signs never go on to develop symptoms.

One project is the Blood Biomarker Challenge - a multimillion pound programme - that is currently trialling how blood tests could be used on the NHS, as part of a wider toolkit of tests.

With one-in-three people living with dementia still undiagnosed, Alzheimer's Research UK's Dementia Unseen campaign, petition link below, is urging the government to take action because people deserve answers, and a chance of the right support early. And improvements in diagnoses will ultimately help to improve the evidence base for rolling out new diagnostic tests - and potentially wider screening - in future.

• Sign here: alzheimersresearchuk.org/how-you-can-help/campaign/dementia-unseen

And experts say the safety net for carers is flimsy at best.

Experts say it's time to rethink how we care - and where we care. With the right support in place, many people with dementia can stay at home longer, maintaining their independence and dignity and relieving pressure on the overstretched NHS.

WHAT MUST CHANGE FOR GOOD:

• Better financial support for family carers. Families need help with the financial burden of caring for someone with dementia - 77% of UK adults and 86% of multi-generational carers want to see a dementia care allowance introduced fast;
• Boost research funding into causes and cures - dementia is the UK's biggest killer, yet funding lags behind other conditions, and 80% of adults say it's time to step up;
• Make better use of the home as a setting for care - most people want to remain at home. With specialist community carers, they often can. This approach improves lives, reduces NHS demand, and can be more cost-effective.