Four readers have been kind enough to share their experiences of Alzheimer's care in France.
From diagnosis and information available, to how they are coping with the financial and psychological impact of caring for a loved one (identities have been changed).
‘They wiped their hands of us’
Mary’s husband, 73, was diagnosed last August with Primary Progressive Aphasia (PPA) – a rare form of dementia.
She says the neurologist gave them the diagnosis, and then pretty much wiped her hands of them.
“I later asked our GP about Alzheimer’s medication, as a particular variety of PPA can benefit from it. However, they told me France no longer prescribes Alzheimer’s medication.
“Apparently, they are awaiting the results of a new drug being tested in the US.”
Mary found this shocking, as the family had previously discovered that memantine, prescribed for her father in the UK, had been helpful.
“The neurologist did the standard memory tests in English, which was good since my husband speaks very little French and is not going to learn at this stage.
“She suggested that speech therapy might help because the main symptom of this kind of dementia is speech loss. He had a few sessions via the internet but they didn’t really help.”
Mary says she had to research dementia and PPA herself.
Although she discovered some drugs that claim to help a specific type of PPA, their GP refused to prescribe them.
“He did offer to put us in touch with a local support group but never actually did.”
The couple are staying in France for the time being, but if her husband eventually requires residential care, Mary says they will return to the UK.
“At the moment, we’re managing, as my husband is still almost functioning as normal, but I don’t know what help he will need in future, or when.”
Read more: Is there any support in France for English-speakers with Alzheimer’s
‘More help is needed for carers’
Patricia and her French husband cared for her father-in-law for the last five years of his life.
“Most of the family was living in Paris, but my in-laws lived in Normandy,” she says.
“Coordinating care and navigating the system at a distance was difficult. It is important to establish a good relationship with the primary doctor.”
She says her mother-in-law was so deferential towards doctors that she did not ask any questions, so getting information was “a challenge”.
“Doctors seemed to find it strange when we asked. At first, they didn’t want to explain anything but we negotiated periodic short phone calls to stay updated.
“It is important to know about side-effects, for example, because dosages need to be adjusted from time to time and alcohol can impact how some drugs work.”
Patricia was disappointed by the lack of professional support for her mother-in-law, 83, who suffered care-giver burnout, fatigue and depression.
“I encouraged her to speak to a psychologist but this was not at all helpful. The therapist said ‘Once you marry someone, it’s for better or for worse, and you should continue to love and support them’.”
The upside was that French doctors helped in subtle ways when residential care became unavoidable.
“The doctor prescribed a maison de repos, describing it as a sort of holiday centre. As time passed, my father-in-law forgot about home and was transferred to a home for Alzheimer’s patients.
“The police were also understanding after he had a road accident and didn’t stop, quietly revoking his driving permit.”
Read more: Dementia care ‘going backwards’ for millions in France
‘You don’t get what you pay for’
Bob looks after his wife, who was diagnosed three years ago.
“We have been disappointed with the help available.
“Frontline staff are good, getting medicines prescribed is easy, but getting doctors’ visits is hard because of the lack of GPs.
“My wife dislikes going to places like pharmacies, and going to a surgery is impossible.”
He says support for carers is non-existent: “The system is really not good. My wife gets five days of respite care a month, and each day is five hours long, which isn’t enough to do the DIY we need to make the house disability-friendly and keep up with the paperwork, let alone follow any hobbies.”
He is also critical of the tax situation: “I have to contribute more than €3,000 a year, and if that was for private care, I’d get tax relief, but as it’s the state system, I don’t get that.”
He says caring for his wife 24/7 means he no longer has any social life.
“She can’t be left at any time. If I go to the shops, I have cameras set up in the house so I can keep an eye on her. The last time I had a break was over a year ago.
“It may be inevitable that she ends up in a care home, although if I can help it, that won’t happen.
“When she goes there for the day, it costs €50 and there’s one person in that room with 10 people. The service you get is not what you pay for.”
Read more: Explained: What help is there for people who are carers in France?
‘Financing care is difficult’
Susan’s husband, 88, has stage-two Alzheimer’s and recently entered an Ehpad – a residential home with medical facilities for dependent people.
“I was looking after him until last August, when we both got Covid,” she says.
“He was in hospital for three weeks, then the social worker said I couldn’t bring him home because he could no longer walk.”
Her husband used to wander about at night and take off his incontinence protection.
“In the end, I had to agree. Some social workers are nice and others less so, but none are willing to discuss the financial implications of dementia.”
Susan was receiving the APA (Allocation personnalisée d’autonomie) benefit at the time.
“It paid for care at home while I went out shopping, but as soon as the situation changes, that stops. [APA is means-tested and based on the degree of dependence.]
“Then you have to redo the dossier and wait for three to four months to start receiving it again, but payments are not backdated.”
The couple had recently downsized and moved closer to their three adult children, who also live in France.
“I realised I needed their help. And luckily we had spare cash from downsizing, which is how we’re paying for a private Ehpad.
“Once that money is gone, we might have to sell the house.”
She adds: “APA doesn’t have to be paid back, but everything else has to be repaid by someone at some point.
“Everyone is expected to pay, including in-laws, and sometimes even grandchildren.
“I am 80. I plan to continue downsizing to pay for care but after that I have no idea how we’ll fund it. We’re just managing day to day.”
Read more: How to get help to pay for care home fees in France
‘Research early while you can’
Susan credits the Alzheimer’s association in France with providing a lot of support.
“They offer a course to learn how the disease progresses and how to get the help available.
“Apart from that, there doesn’t seem to be a central organisation to supply all the information you need. You have to contact lots of different groups.”
She advises people to start researching Alzheimer’s as soon as there is the slightest suspicion of a problem.
“Do it while you can still get out and about on your own.
“Dementia can progress very fast and suddenly you can’t leave them, and you are too preoccupied to get the information and do the paperwork.”
Susan says her research shows there are 770,000 beds available in Ehpads, 90,000 of which are for totally dependent people.
“It is nowhere near enough. With an ageing population, it’s going to be a big problem. Also, Ehpads are understaffed. I was promised help for four hours a week but often no one was available.”
She says her husband has lost a lot of weight in the Ehpad.
“I’d like him moved closer to home so I can go in at mealtimes and feed him, a job which can take half an hour.
“They only have two people looking after 14 patients. At night, there are just three people looking after 80 people, 14 of whom are totally dependent, like my husband.”
Susan’s husband died after this article was written. She gave permission for the interview to be published in the hope that it might help other readers.
Read more: A guide to retirement homes in France
Insurance can pay for home help and alterations
Assurance dépendance pays out when the holders become unable to care for themselves.
Most policies insure against partial and/or total loss of autonomy, either with a one-off lump sum or monthly payments. The exact sums depend on the terms of the policy and degree of incapacity.
Generally speaking, the younger the policy-holder, the lower the premiums.
Most people take out cover aged between 40 and 70. Some providers have upper age limits for applying.
Depending on the policy, it could cover alterations to adapt your home for a dependent person, home help, specialised transport and even funeral expenses.
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