While the discovery of a cure, or treatment, for dementia seems painfully distant, health leaders around the world are thinking about how to prepare medical services for a breakthrough — if and when it comes.
The past few years have been a time of serial disappointment for those hoping a remedy was on the near-horizon. Yet the battle to ameliorate the disease’s impact does not stop at the lab door.
Policymakers and medics are pondering the practical and financial challenges to overstretched health systems that a successful treatment would bring.
Some of the most detailed analysis has been undertaken through the Rand Corporation, a US think-tank. Soeren Mattke, director of the Center for Improving Chronic Illness Care at the University of Southern California, has overseen two studies under the auspices of Rand — one examining US healthcare provision and the other that of several European systems.
He states his conclusion simply: “I don’t think they are well prepared.”
The European inquiry concluded that 1m people could be left without access to transformative care if a breakthrough occurred, while the US study found more than 2m people with mild cognitive impairment could develop Alzheimer’s in the two decades after a disease-modifying treatment was approved, while waiting for evaluation and treatment.
In this context, the recent failure of aducanumab, a drug that had seemed to show promise in eliminating beta-amyloid plaque — often blamed for memory loss and other impairments caused by dementia — may have spared health systems huge pressure.
“In essence the big crisis [for preparedness] would have been if aducanumab had worked and would have entered the market next year,” says Mr Mattke.
He adds that framing an Alzheimer’s treatment as preventive, on the grounds that the disease cannot be reversed and therefore must be stopped from developing in the first place, means “the connotation is often things you do in a GP’s office, like [prescribing] statins, vaccinations — things that are really easy to do and don’t require resources and special skills”.
When it comes to the prevention of Alzheimer’s, however, the process should be seen as more equivalent to “high-end oncology care”, with the need for high-cost imaging, for example. “It is preventive but with a very sophisticated and medicalised approach,” says Mr Mattke.
The overarching problem shared by the Rand studies was “a lack of specialists that can actually diagnose and administer the treatment”, he says.
However, there were differences in the way that care was organised between countries, pointing to at least a temporary solution to workforce shortages.
In Germany, Mr Mattke explains, dementia care has traditionally been in the hands of psychiatrists, a much bigger specialism than neurology. The waiting time to be treated after an effective remedy emerged would be just five months, compared with 19 months in the country with the longest wait, France, the European study found.
Another issue was the availability of the correct equipment, particularly PET scanners needed to carry out diagnoses by taking pictures of the brain.
Mr Mattke says many countries would be reluctant to buy the number of machines required to cope with a surge in demand once a treatment was discovered, aware that they might end up with too many when the initial clamour died down.
Here again, however, a different approach might ease the pressure. Testing people via a spinal tap is “considerably cheaper than using PET scans and you don’t need a big infrastructure”, he points out.
Alison Evans, head of policy and impact at Alzheimer’s Research UK, says that, given the sheer number of people living with dementia, it is important to begin looking now at how any treatment could be paid for.
While the London-based National Institute for Health and Care Excellence, which judges the cost-effectiveness of drugs, normally looks mainly at clinical costs, the majority of savings arising from dementia treatments would be in social and informal care, making it vital that those are factored into the equation, Ms Evans makes clear.
Given the immediate pressures on health budgets around the world, persuading governments and health systems of the need to commit resources to preparing for a still-notional treatment might not be easy.
Yet, says Ms Evans, spending just 1 per cent of the £26bn that dementia costs the UK economy on searching for a treatment (according to modelling by the Office of Health Economics) could help speed up the discovery of a transformative drug and improve the lives of people living with the condition.
“Yes, we need to think about today, but we [must] not ignore tomorrow,” she adds.
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