Help for Alzheimer’s sufferers and their carers

Around a million people have been diagnosed with Alzheimer’s disease or related dementia conditions in France and there are almost a quarter of a million new cases per year. They affect about a fifth of people aged 75 or more.

Experts say, however, lifestyle factors, such as diet and intellectual stimulation, are a factor in around a third of cases and that improving these can often help put off developing the disease or slow its progression.

There is no cure yet. Institut Pasteur states that several medicines exist which can somewhat slow the illness or improve certain behavioural symptoms: donepezil, rivastigmine, galantamine and memantine. 

However, these are not currently reimbursed as they were deemed by the Haute Autorité de la Santé to lack sufficient proof of efficacity, and to have too many risks of side effects or undesirable interactions with other medicines.

This decision was criticised by France Alzheimer, which states that the medicines ‘visibly’ help and there are positive reports from sufferers’ families. Those with concerns should speak to their GP but a diagnosis may take two years from the first appearance of signs. Diagnosis involves various psychological tests based on memory and carrying out simple tasks. Medical imaging can also be used to detect alterations in the brain.

Medical care related to Alzheimer’s is reimbursed at 100% and there is a range of potential social security benefits such as the Allocation Personnalisée d’Autonomie to help sufferers stay in their own home; disabled person’s cards, allowing benefits including lower income tax; and disabled person’s parking cards. Maisons Départementales des Personnes Handicapées (MDPH), linked to the departmental council, are a key contact for queries about these.

The France Alzheimer association can give practical advice as well as organising activities to help sufferers and families cope better. It has branches in every department. It even has its own radio station, with stimulating music and helpful content.

Before the Covid pandemic a support group in Dordogne used to offer English-speaking meetings, with activities, however, it has not since resumed face-to-face events. One of the organisers, Alex Hewitt-Jones said, however people can contact him for email or phone support (06 06 46 24 94 and francealzheimerdordogneenglish@gmail.com). 

Activities in the past have included cafés mémoire (to share coffee and a chat), cookery and well-being sessions. Sessions typically also include family and friends.

“People can come along and play games, have a discussion... and we can talk to carers about any difficulties they are facing and help to put people in contact with the right medics and the right part of social services to get the support they need” said Chris Grasby, a former volunteer for a group in Bergerac.

 While English-speaking groups are not widespread, he said he would encourage anyone grappling with the disease to contact their local France Alzheimer branch.

It can be difficult for people to come to terms with their condition, he said. “Often people in the English-speaking community will think of going back to their country of origin for care but it can be difficult – and perhaps houses are hard to sell. If you go to the doctor you will not necessarily be oriented towards the association, and we are keen for people to know what’s available as early as possible.” While a sufferer’s outlook is not bright, a group can offer vital “moral support”.

France Alzheimer also offers training for family, friends or neighbours. “It can be frustrating for them and we help them feel less lonely, isolated and stuck with the difficulty of dealing with someone who is suffering memory loss.” 

The effects of the disease can be especially distressing to expatriates, he said. 

“Recently-learned things, such as second language skills, are often among the things that sufferers may forget first. We can’t necessarily help people regain that lost brain function, but we can get together with them to talk about it and lighten the burden.”

Nationally, the association’s activities include workshops with art and music therapists, respite care from half-days to several days, and even holidays. A dedicated ‘Alzheimer village’ located in Dax, Landes allows people with neurodegenerative diseases to live in a house with their partner in a safe environment as close to normal life as possible. With streets, squares, fountains, street-lamps and shops it was intended to look like a village but has just one, secure entrance. Medical staff are on hand.

Other departments across France have expressed interest. France Alzheimer however thinks the best way to invest its resources is to prioritise respite centres to help more people stay at home. These already exist for day care or for a week or two but availability varies around France.

At home sufferers may have the right to a nurse to help administer medication or an auxiliary for tasks such as washing, dressing, mealtimes, housework, shopping and activities such as trips to doctors and administrative visits. At diagnosis a patient may also be due a visit by a specialist medical team which can include an occupational therapist and a nurse who will help sufferer and family adapt. There are also day hospitals where activities are organised to stimulate the sufferer such as games or walks.

A sufferer can give legal authority to another person to take important decisions when he or she is no longer able to do so, such as in a property sale.

France’s first ‘Alzheimer’s village’ mirrors local life 

France’s first Alzheimer’s village welcomed its first residents in Dax (Landes) in 2020 and organisers now hope to inspire similar set-ups in other areas. A delegation from the Côtes d’Armor visited in 2022 with a view to a possible future installation in Brittany.

The village is inspired by models from the Netherlands but based on local architecture. The idea is that Alzheimer’s sufferers should feel at home in a familiar environment. Staff at the Village Landais Alzheimer do not wear a uniform. Administrative staff moved onsite in February 2020, and the first 70 operational and health workers joined them next before the 120 residents arrived. Nursing assistants, carers and social or educational support staff are on hand.

Mathilde Charon-Burnel, spokeswoman for the Landes, said: “We are all pleased that the project was built on time and on budget. When the project was announced, we said that we hope it would serve as a model for others.” Most of the residents are from the Landes and neighbouring departments, but a few have come from further away.

The village cost €28.8 million, at least double the cost of normal specialised Alzheimer care homes, but those are designed for only 20 to 30 residents, so the actual cost per resident is less in the village. Funding came from the department and regional and national health authorities. Running costs are €6.7 million a year.

Planners took inspiration from the bastide layout typical of south-west France, and the village includes a central square, café/restaurant, a hall suitable for concerts, a village store and a hairdresser. In 2022 a clinic opened including general practice medicine, dental care, ophthalmology and help with hearing aids.

Spread over five hectares, the village is divided into four quarters. In total, there are 16 homes of 300 m², with each building having seven to eight residents. There are gardens where residents who grew vegetables at home can continue to do so, and an area with poultry and other animals, which residents can help to look after if they are familiar with this.