‘The comparative neglect of dementia has several causes. One is that it often falls between different government agencies…Often the provision of long-term care is the responsibility of local governments, so its availability and quality vary wildly. More fundamentally, the old notion that dementia is a natural part of the ageing process is deep-rooted—held by two-thirds of people and even by 62% of medical practitioners, according to a survey last year by Alzheimer’s Disease International (ADI), an advocacy group…. On top of the stigma the condition brings, there is another reason why people prefer not to confront the dementia emergency: fear. Knowing how likely they are to develop it, and seeing the difficult lives of those who already have, they prefer to look the other way—and just hope that a cure will one day be found.‘
The vision of preventative medicine – a promise that the cruellest diseases will not just be cured, but eradicated – has always been uniquely powerful. But the diagnostic holy grail at its heart has remained elusive, except in the most outlandish fictions.
Now, in 2021, we are finally on the brink of the preventative paradigm. The NHS is embarking on a landmark pilot: a DNA-based blood test which scans for early cancer markers. This innovation, with its potential to transform early detection and treatment, hints at the thrilling promise of genomics, driven in large part by the 1 Million Genomes project established by David Cameron’s government. Yet this field, and the related conditions it serves, remains drastically under-funded.
This is most acute in the treatment of dementia – an umbrella term for over 400 discrete but still little-understood diseases of the brain – which affects 50 million people globally, costs more than cancer and heart disease combined and is the single biggest health emergency for a fast-ageing world. There is still no cure. The societal costs of dementia are impossible to overblow. As the Economist notes: ‘Set against the size of the world’s population, these numbers may seem manageable. That is illusory. Nowhere in the world, rich or poor, is equipped to deal with the scale of the problems created by dementia’. By 2030, the WHO estimates, global care costs will reach $2trn. In Britain, the £26bn bill of today will double by 2050. The burden is overwhelmingly borne by families, exacerbating deep inequities. In 2018, 70% of the average lifetime cost of care for an American with dementia ($350,000) was attributed to care at home by family (The Economist). The aftershocks are inter-generational, curtailing working-age populations and denying the transference of assets to the young.
Yet dementia research receives around 10x less funding than cancer (for example, UK dementia research charities funded approximately £23m of research in 2015/16, compared to £310m of charity research funding for cancer). This is a human travesty, and a sorely missed opportunity.
But the story is shifting. Hope rests on the early detection of related disease biomarkers, some 15 years before symptoms manifest, in order to arrest or delay progression. This once once-impossible ambition is now, with genomic breakthroughs, slowly becoming reality. Delaying the onset of disease by just two years would have a dramatic effect on costs (saving an estimated 12.9bn by 2050, according to recent modelling by Alzheimer’s research UK). Such small wins indicate the scale of what is at stake and what could be gained with further genomics investment.
Since 2020, Time has been working with global leaders to catalyse investment in genomics, dementia treatments and specialist care providers, in order to increase global access to these transformational innovations. Truth is sometimes more beautiful than fiction. This is the real story, the real opportunity, and it’s dazzling.