Britain must confront dementia with the same determination that transformed cancer care, Baroness Louise Casey has said in an appeal to the Daily Mail.
Lady Casey, who chairs the Independent Commission on Adult Social Care, urged ministers to make dementia “Britain’s next great national mission – just as cancer was for previous generations”.
Her call follows a new report from Alzheimer’s Society and The King’s Fund, which warns that dementia care in England is still “stuck in the last century” and requires radical reform.
The report says the dramatic improvement in cancer survival rates over the past five decades offers policymakers a blueprint for improving dementia diagnosis, treatment and care. But with the population ageing rapidly and the number of cases climbing, it warns that action is increasingly urgent.
Lady Casey and Professor Sir Mike Richards, the former national cancer tsar, will press the Government to act when they speak at the Alzheimer’s Society annual conference in London today.
Writing for the Daily Mail, Lady Casey said: “Many people in this country will remember when cancer was widely seen as a death sentence, and little could be offered beyond making people as comfortable as possible in their final days.
“Since the 1970s we have largely transformed that story through decades of research, earlier diagnosis, public awareness, clinical trials and better treatments.
“This tremendous progress did not come from one miracle cure or one government.”
Lady Casey, chair of the Independent Commission on Adult Social Care, has urged ministers to make dementia Britain’s next major national mission, echoing the campaign against cancer led by previous generations.
‘It came because the country decided that cancer mattered, deserved our national effort, and kept up the fight, year after year.
‘It is time we gave dementia that same seriousness and ambition.’
The Daily Mail and Alzheimer’s Society have partnered in a drive to defeat dementia, which claims 76,000 lives a year as Britain’s biggest killer.
Our Defeating Dementia campaign aims to raise awareness of the disease, in an effort to increase early diagnosis, boost research and improve care.
The number of people living with dementia in the UK is expected to rise from 1million to 1.4million by 2040, with the cost to the economy predicted to double.
The new report sets out the steps experts believe the government, NHS and social care leaders must take if dementia diagnosis, treatment, care and support is to make the same progress seen for cancer, where survival rates have almost doubled since the early 1970s.
It calls for strong leadership, clear targets for diagnosis and treatment, and a commitment to improving the quality of data.
Alzheimer’s Society has previously accused the NHS of treating dementia patients like ‘second-class citizens’ who are often ‘cast aside’ with little more than a leaflet.
Professor Sir Mike Richards told the Daily Mail that ‘in many ways, dementia is where cancer was decades ago’ but there are ‘lessons to be learned’ and opportunities for dementia to ‘do a bit of catching up’.
And the Daily Mail revealed an 18-week diagnosis target for dementia appeared in early drafts of an upcoming government guidebook but was removed in later versions, raising fears the condition is not being treated as a priority.
However, the government has committed to appointing a ‘dementia tsar’, who charities hope will drive the kind of sustained change that transformed cancer care, and there are promising new drugs on the horizon.
As the first ‘cancer tsar’, appointed as National Cancer Director in 1999, Sir Mike oversaw three consecutive cancer strategies.
Speaking ahead of today’s event, he told the Daily Mail that ‘in many ways, dementia is where cancer was decades ago’ but there are ‘lessons to be learned’ and opportunities for dementia to ‘do a bit of catching up’.
Sir Mike added: ‘When I started working in cancer 50 years ago, an eminent professor asked me why I wanted to work in oncology, adding “Don’t they all die?”.
‘There was so little hope and ambition. But look at what we have managed to achieve.
‘While there are still real challenges in cancer, the progress made shows what can be possible when investment, collaboration, leadership and hope combine.
‘Today, what continues to make the difference are clear diagnosis and treatment pathways with timed targets, and a national registry that tracks progress.
Sarah Woolnough, chief executive of The King’s Fund, said approaches to dementia care are ‘still stuck in the 20th century’.
Michelle Dyson, chief executive of Alzheimer’s Society, said ‘urgency is critical’ and the country cannot wait 50 years for improvements.
‘Dementia deserves the same ambition that has transformed cancer care. Now is the time to build momentum.
‘The conditions are right for the incoming dementia tsar to lead a movement for change, but it will require everyone involved – patients, clinicians, health service managers, academics, charities, industry, together with ongoing political will – to deliver long-term change.’
The gulf between people’s experiences of dementia care and cancer care are further exposed in a new survey of 1,000 people caring for someone with dementia.
Around a quarter of respondents were able to make a direct comparison between diagnosis, treatment and support for both dementia and cancer.
Over half (51 per cent) said their experience of dementia care was worse and only one in ten (11 per cent) said it was better.
Sarah Woolnough, chief executive of The King’s Fund, said: ‘There was a time when cancer was thought of as a death sentence, frequently referred to as the “Big C”, such was the fear around a diagnosis.
‘Whilst still a major killer claiming far too many lives, many people are living well and after cancer and there has been a remarkable transformation in cancer outcomes in a relatively short space of time.
‘The same cannot be said for dementia care, with approaches to treatment still stuck in the 20th century.
‘There is ambition that this might be about to change, with recent major scientific advancements giving hope that dementia treatment on the cusp of a cancer-style revolution in care.
‘We will only be able to fulfil this potential if the health and care system is ready to diagnose dementia swiftly and roll out new innovations at scale.
‘That is currently far from the case, and we believe that lessons can be learnt from the progress made in cancer.
‘The potential for wholesale change is within reach; policymakers now need to follow these steps in order to grasp it.’
Michelle Dyson, chief executive of Alzheimer’s Society, said: ‘If you have cancer, it is treated urgently, you get a specific diagnosis, and there is a clear pathway that takes you through your care and treatment.
‘With dementia, it can be years before you get a diagnosis and, all too often, people are sent home with a leaflet and little else.
‘Both are horrendous conditions, and there is still much to do for cancer care, but people’s experiences are worlds apart.
‘I know first-hand, as a former Director General in the Department of Health and Social Care, what happens when something is made a priority, with proper targets, investment, leadership and accountability. We desperately need this for dementia.
‘Urgency is critical. Dementia is the UK’s biggest killer and we cannot afford for this to take 50 years.
‘Government must make dementia a priority and learn what it can from cancer to create a future where dementia no longer devastates lives.’
Social care minister Alison McGovern will admit dementia has been ‘neglected for far too long’ when she delivers a speech at the conference.
She is expected to say: ‘Nowhere is the division between health and social care felt more sharply than by people living with dementia and their families – too often left to navigate a fragmented system at the most difficult time in their lives.
‘That is why, this year, we will publish the first ever Modern Service Framework for Frailty and Dementia, our guidebook for better support.
‘It will bring health and care workers together, adhering to a set of clear national standards, sharpening our priorities, and raising expectations of the help that people living with dementia and their families should receive.
‘We must put a floor under the kind of care that people can expect.
‘And we must improve quality of care, giving the workforce the direction and support it needs to reach those standards.
‘No one wants a future where we live longer but can do less. We want a future where our loved ones stay with us for more years with more joy and more life to live.’
Baroness Louise Casey
Lady Casey warns: ‘We cannot stick our heads in the sand.’
By Baroness Louise Casey, chair of the Independent Commission on Adult Social Care.
Many will remember when cancer was widely seen as a death sentence and little treatment could be offered beyond making people as comtortable as possible in their final days.
Since the 1970s, we have largely transformed that story through decades of research, earlier diagnosis, public aware-ness, clinical trials and better treatments.
This tremendous progress did not come from one miracle cure or the actions of one government. It came because the country decided cancer mattered and deserved our effort. And we kept up the fight year after year.
It is time we afforded that same seriousness and ambition to treating dementia.
September is World Alzheimer’s Month. It should be a moment of national resolve: a commitment to make dementia Britain’s next great national mission, just as cancer was for previous generations.
Dementia is not a normal part of ageing, but a collection of neurological diseases, including Alzheimer’s. Yet, too often, it is treated as part of a person’s inevitable decline or a social care problem rather than a series of major health conditions that can be diagnosed, researched and treated.
It’s people with dementia, and their families and loved ones, who feel the consequences. I have met far too many people who receive a diagnosis… and then are left alone to cope.
Alzheimer’s Society is right to call for those with dementia to receive a diagnosis, care plan and access to treatment within 18 weeks of GP referral. This standard, or better, is already in place for other major health conditions. Dementia should be no different.
But this is just the beginning. The lesson from cancer is that our efforts work best as part of a wider mission: investment in research, expanded trials, better treatments, support for people after diagnosis and a workforce ready to deliver those new treatments.
That is why we must make this country a great place to conduct dementia trials. I implore the NHS to get ready to deliver the next generation of breakthrough treatments.
Healthier lifestyles, earlier diagnoses and better treatments across the board mean we’re living for longer – and with that brings a new challenge. As more of us live into our 80s and 90s, it is not enough to simply add years to life – we need to ensure that our twilight years are as healthy as possible.
By 2040, there will be 1.4million living with dementia. We cannot stick our heads in the sand.
Delivering this national mission also requires someone with the authority to drive it. That is why I called for the appointment of a dementia tsar to lead the charge.
Responsibility is currently scattered: when responsibility belongs to everyone, accountability too often belongs to no one. We need someone to own the problem and drive the kind of action needed to solve it.
Britain has repeatedly shown that it can achieve extraordinary things. We rebuilt the country after the war, we developed vaccines at record speed during the pandemic and have transformed cancer survival since the 1970s. The lesson is that progress follows when we act together.
Dementia can be that next national mission.
But lasting change cannot be designed by politicians and experts alone. We need the public to help decide what dementia sufferers and their families should expect and what system we are prepared to build together.
That is why we are asking people across the country to take part in the Big Conversation on Care. There will be many opportunities to get involved but, as a first step, I’m asking you to vote on the proposals the public have been putting forward before September 23.
Together, we can turn national resolve into action. If we can improve diagnosis, treatment and care for people facing dementia today, there will be greater hope for all of us tomorrow.
- For confidential advice, call Alzheimer’s Society’s Dementia Support Line on 0333 150 3456
