France was once a pioneer of Alzheimer's care, but as the number of sufferers continues to rise and budgets are cut, the country is now struggling to tackle what is one of the world's most pressing public health crises.
Approximately 1.4 million people in France are affected by Alzheimer's disease and related disorders – amounting to 8 percent of people over 65.
Around 225,000 new cases are diagnosed each year, with the disease representing 70 percent of all age-related neurocognitive disorders.
By 2050, an estimated 2.2 million people in the country are expected to be living with the disease, out of a population of 68 million.
"Cognitive disorders are now the leading cause of loss of autonomy in France," said Lorène Gilly from France Alzheimer, the country's leading patient advocacy organisation for the disease. "We must be able to respond to this major public health challenge."
Budget cuts
France established itself as a global leader in Alzheimer's policy through groundbreaking national plans launched in the early 2000s.
The 2008-2012 Alzheimer Plan, featuring 46 measures and a €1.6 billion budget, was "recognised worldwide and is still cited as an example internationally," according to Gilly.
The plan created specialised Alzheimer teams and established a comprehensive network of Centres de mémoires (memory centres) and expert centres.
But momentum has slipped. The 2014-2019 neurodegenerative diseases plan contained "more than double the measures of the Alzheimer plan for a third of its budget," explained Gilly.
Insufficient resources have also slowed down access to the system, she says. "You have to wait between six and 12 months now to get on to the pathway to care. That’s too long for a neurodegenerative disease."
Progress in treatment and diagnosis
Early diagnosis of Alzheimer's is key to slowing its progression. Progress in that regard has been made thanks to biomarkers – proteins in spinal fluid – and PET scans showing amyloid plaques, both of which enable earlier, more accurate diagnosis.
Specialist centres such as the ICM in Paris and others in Montpellier, Bordeaux, Toulouse, Strasbourg and Lille are particularly strong in this field, said Dr Rémy Genthon, head of research at the Alzheimer Research Foundation.
This breakthrough has revolutionised clinical trials. "We can now make studies a bit more interesting because we conduct clinical studies on patients that we know have the right amyloid target," said Genthon.
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There is still no cure for Alzheimer’s, but hopes are high for new treatments – namely the drugs Leqembi and Donanemab, the first disease-modifying drugs for Alzheimer's disease.
Rather than merely treating symptoms, they target the underlying amyloid plaques believed to cause the disease, offering a 30 percent reduction in disease progression for patients treated early, said Genthon.
"Imagine someone who is 70 years old starting the disease. If you remove 30 percent of its progression, they might gain two or three years of being better, of being able to talk to their grandchildren... be a real grandfather rather than a mummy in a chair."
Already approved in the United States and by the European Union's European Medicines Agency, Germany and Austria have recently given Leqembi the green light, but France declined to.
Earlier this month the country’s High Authority for Health (HAS) refused early access to Leqembi, citing "very insufficient benefits" against "significant side effects," including risks of brain haemorrhages and oedema.
"It’s tragic, a catastrophe for the entire medical community," said Genthon.
He acknowledges the gravity of potential side effects but maintains that they remain rare. For him the decision contradicts European approval and relegates France to a "little Gallic village saying no" whilst other countries move forward.
He also points to a culture of "Alzheimer-denial", where some still see the disease as basically dementia and therefore "not worth making a fuss about".
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Budget crisis
Research into Alzheimer's disease remains severely underfunded. Cancer research receives 100 times more funding, according to Genthon.
It's a situation that is unlikely to improve given France’s huge budget deficit, and the resulting need to find €44 billion in savings for next year.
Genthon fears the decision to refuse authorising Leqembi was driven by cost concerns rather than clinical merit. The country’s "dramatic economic situation" has made authorities "even more cautious" about such expensive treatments, he said.
He raised the prospect of a two-tier system, in which private clinics in France would import the drug from Germany and provide it to their fee-paying patients.
Gilly, meanwhile, points to chronic underfunding of the healthcare system as a whole, which is resulting in stark geographical inequalities. Rural areas are particularly underserved, creating additional burdens for family carers.
"You’re better off having the disease diagnosed in one territory rather than another," she said, adding that France Alzheimer's network of 102 departmental organisations sees these disparities first-hand.
The organisation's goal is for all of France's nursing homes to be equipped with a specialised Alzheimer's unit – currently, only 26 percent are.
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International pressure
Specialised units are particularly critical for younger Alzheimer's sufferers. When you’ve been diagnosed at the age of 42, Gilly says, "it’s troubling to be told that the only solution is to go to a nursing home".
While France had built excellent foundations, she added, it "left them aside for far too long" as patient numbers increased. This has resulted in "very big problems at every stage of the care pathway".
Alzheimer France's volunteers support families who are left to do the caring when there is no available place in a specialised unit, but Gilly warns the system is under great strain. "We can no longer consider carers as the moving part in a public policy struggling to respond to this challenge."
As France prepares to host the 37th International Alzheimer's Disease Conference in Lyon next April, advocates hope international pressure will galvanise politicians.
The new 2025-2030 Alzheimer’s strategy has ambitious goals, including making France "the world leader in terms of innovation and research".
For Gilly's part, she says: "We're going to be very watchful regarding its deployment, the timeline, and the budget dedicated to implementing each measure."
