An organisation set up to improve Alzheimer’s care in France has accused the government of moving backwards on plans to deal with the disease.
In a recent meeting with lobbyists, the health minister promised action on Alzheimer’s, Parkinson’s and multiple sclerosis, branding them a “major public health issue”.
François Braun promised the ministry was working on a long-term action plan backed by a “strong financial commitment”, which would be unveiled next year.
For Lorène Gilly, head of public policy monitoring at France Alzheimer et Maladies Apparentées, action cannot come soon enough.
“Millions of people are affected by these diseases but French provision relating to them has slid backwards in recent years.”
‘France no longer has plan’
In 2019, around 1.2 million people in France had some form of dementia.
The numbers are expected to rise above 2.1 million by 2050, yet Ms Gilly accuses the government of spending less and backtracking from having a comprehensive National Dementia Plan to having no plan at all.
“The G7 health ministers have committed to making dementia a priority, highlighting the importance of the WHO Global Action Plan, but we are going backwards, despite being a signatory of that plan.”
‘Sarkozy plan watered down under Hollande’
With 225,000 new cases diagnosed every year and a suspected half a million cases undiagnosed, the clock is ticking, she warned.
“The Plan Sarkozy from 2008 to 2012 was good. It allowed us to take steps forward and France had a comprehensive Alzheimer’s strategy.
“We were among the first countries in the world to recognise the challenge and a budget of €1.6billion paid for 46 new measures to be put in place. It made a huge difference.”
However, in 2014 President François Hollande announced that all neuro-degenerative diseases were to be tackled together, allocating just €470million to that end.
“It was always clear this plan wouldn’t work, and it didn’t,” said Ms Gilly.
She does admit, however, that some progress was made.
GPs received awareness training in the diagnosis of dementia, which is crucial to catch the disease early and slow its development.
‘Millions are waiting for help’
Yet Ms Gilly is critical of government action in recent years.
“The last meeting was in 2019 and since then there has been nothing – no plan, no money, nothing.
“Along with other associations, we have lobbied hard and last year the minister finally said that an evaluation would be carried out.
“It was done by a Canadian and a French investigator, both working from home rather than interviewing in person. They didn’t accept we need more facilities and a coherent strategy.”
Discussions began but tailed off again as the 2022 election approached and have yet to be picked up, said Ms Gilly.
“Families have no idea what support they can get or expect. Millions are waiting for help.”
‘Rapid response appointment can take a year’
One issue identified by Ms Gilly is that patients under 60 who are diagnosed with dementia are classed as disabled workers, whereas those diagnosed after that age are categorised as dependent, which means they get fewer benefits and far less help.
She added that because sufferers do not always ‘look’ disabled, they often face an uphill battle accessing support, including something as simple as a disabled parking permit.
“In some areas of France, people have to wait over a year for an appointment with the ‘rapid response’ team after a diagnosis,” said Ms Gilly.
“The postcode lottery extends to EHPADs [care facilities for dependent elderly people], only a third of which are properly equipped for dementia patients.”
She added: “In some areas, it is almost impossible just to get a diagnosis, which results in unequal access to medication. And now France no longer reimburses them.”
‘Families impoverished for generations by care bills’
The problems are exacerbated by lingering stigma and prejudice against dementia patients, as well as poorly trained staff.
For this reason, said Ms Gilly, the onus is often on families to look after sufferers themselves and fund their continuing care.
“Families can find themselves under a lot of pressure, sometimes even giving up work to care for a relative.
“Then, if that relative goes into residential care, they can be faced with massive bills, as well as the agony of realising their loved one no longer recognises them.”
She added that the government has done little to address the economic consequences of dementia: “Families can be impoverished for generations by bills relating to care. Some people have to sell their homes to pay for a loved one’s care.
“People need urgent, concrete, permanent answers.
“National solidarity should not be a case of families being impoverished and destroyed.”
Help in English
The Facebook group Strictly Santé France also provides mutual support on all healthcare issues (in English).
There is also an English-speaking contact (Alex Hewitt-Jones) at the France Alzheimer Dordogne office (email: firstname.lastname@example.org telephone: 05 53 27 30 34).
We would like to talk to readers with a family member who has been diagnosed with dementia in France. Please contact us via email@example.com with a daytime phone number.