For a long time, dementia has been seen as too complex and too difficult to solve. At one time, this was how we thought about cancer. But evidence of poor patient experience and outcomes, long waiting times and variable access to new treatments inspired the political will to transform cancer care.
In dementia, emerging diagnostics, the first treatments for Alzheimer’s disease, and new knowledge about preventing the diseases which cause dementia are laying strong foundations for similar change. As the former National Cancer Director (or “cancer tsar”), I believe the conditions are right for the incoming dementia tsar to achieve the same for dementia as has been achieved for cancer.
When I started working in oncology 50 years ago, the word “cancer” was often not used at all and in many cases relatives were told the diagnosis rather than the patients. At the time, an eminent professor asked me why I wanted to work in oncology adding: “Don’t they all die?”
By the late 1980s, little had changed: many patients were diagnosed late and there were wide variations in treatment.
The experience of cancer patients decades ago has many similarities to that of people with dementia today. Dementia is a leading cause of death in the UK and piles immense pressure on health and social care with around one in every six hospital beds occupied by someone with dementia.
Diagnosis often comes too late, if at all, and only around 2 per cent of people get an accurate diagnosis confirmed by a PET scan or lumbar puncture. Access to symptomatic treatments is inconsistent and treatments tackling the underlying causes of early-stage Alzheimer’s disease are UK-approved but not available on the NHS.
Care pathways are fragmented and public stigma persists, further delaying support. Despite the impact of dementia on people’s lives, we have not seen the prioritisation and investment given to other major long-term conditions, including cancer and heart disease.
At a recent Health and Social Care Committee session, Baroness Casey said: “[I] cannot emphasise enough how much dementia has been overlooked” in policy. Earlier this year, calling for a full-time dementia tsar, she lamented that, “with dementia, families bear the brunt, often left with little help”.
Many people with dementia and their carers routinely struggle to access support until crisis, squeezing an overburdened health and social care system. The Modern Service Framework for Dementia and Frailty, alongside a dementia tsar driving progress in diagnosis, treatments, care, and research, gives a framework for change that was critical for cancer more than 20 years ago.
But one plan and one person alone is not enough. Building a whole movement for change is crucial, involving patients, health service managers, clinicians, academics, charities and industry. It also requires ongoing political will to make change.
In 1999, Tony Blair made cancer a top priority. This was key in achieving today’s standard of cancer care. It led to my appointment as cancer tsar and the first NHS Cancer Plan in 2000. That plan was comprehensive, setting expectations for screening and waiting time targets; facilities including scanners and radiotherapy; the workforce; investment; and the establishment of local delivery networks.
It also led to a powerful movement for change, while clear targets held us to account for delivery. A combination of national and local leadership, alliances, robust data, and scientific advances drove transformational change.
Although much remains to be done on cancer, attitudes, diagnosis, treatments, and care have come a long way. Dementia needs many of the same things – clear diagnostic and treatment pathways with timed targets and a national registry to track progress.
The National Cancer Registration and Analysis Service provides robust data covering England’s entire cancer pathway and follows up with patients annually. International monitoring of cancer diagnoses, treatments, and outcomes enables us to assess progress.
It’s a different story in dementia. As The King’s Fund stated: “The quality and consistency of data lead(s) to an incomplete and fragmented picture of care.” Getting the whole picture is vital for progress.
Elsewhere, The King’s Fund argues that dementia can learn from cancer and other major conditions. Not only is now the time to build momentum on dementia, but the conditions are right for a dementia tsar, with the support of others, to deliver long-term change.
Early and accurate diagnosis is expensive and convoluted but evidence is emerging that blood tests could support better, faster, and cheaper diagnosis. The UK-based Blood Biomarker Challenge aims to get them into the NHS by 2029.We now have the first drugs that slow Alzheimer’s disease and there’s a growing real-world evidence base demonstrating their effectiveness.
We are at a significant moment in dementia where rapid progress is being made in prevention, diagnosis, and treatment. Alongside national policy, particularly the Modern Service Framework for Dementia and Frailty, this can coalesce into a bold and ambitious long-term plan for change.
Around 1 million people in the UK live with dementia. It’s a terminal condition yet people can live for years with symptoms before getting a diagnosis and then are often sent home with only a leaflet. Dementia deserves the same ambition that has transformed cancer care.
While there are still real challenges in cancer diagnosis, treatment and care, the progress made shows what is possible when investment, collaboration, leadership and hope combine.
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