The village where everyone has Alzheimer’s and autonomy
Text by Eleanor Steafel
‘Two loaves of bread, a lettuce, two brioches, one pat of butter, two bottles of milk, some soup, cheese, biscuits, a bar of chocolate, eggs, loo roll…’ Francis Lalane is reading out his shopping list. It’s 11am and the small supermarket in the centre of Landais, a village in Dax in south-west France, is in the thick of the pre-lunch rush. Locals are arriving two by two, collecting a little red trolley from the porch and making their way at a sedate pace around the shelves.
‘We take it in turns to do the shopping,’ says Francis, heading confidently for the fridge, his neighbour Véronique in tow. ‘You see – we have our trolley, our list, et voilà.’
February sunlight streams in from the square outside. The village is peaceful, save for the sound of singing coming from the restaurant next door, and the gentle bustle in the shop. The shelves are stocked with all the usual essentials and little luxuries, from crates of apples to a small fridge boasting some nice cheese and pots of crème caramel. A blackboard on the wall announces there are brownies available today should anyone be inclined to pick up an afternoon treat; stock cubes, prunes and kitchen sponges are on order, arriving next week.
It’s the kind of scene that plays out every day in villages all over France. But look a little closer and you’ll notice some crucial differences. No money is changing hands, no one is in a rush to get their shopping done before a meeting, or fitting in a chore before children need picking up from school – the clientele are (mostly) of a certain age. Look closer still and you’ll see that for every elderly person clutching a shopping list there is a slightly younger companion gently guiding them through the motions. It isn’t immediately obvious, but every single resident of this village has Alzheimer’s disease.
‘If you have any questions now’s the time, eh?’ says Francis cheerfully. ‘Doing the shopping helps with our independence,’ he says. It’s the kind of mundane errand we take for granted until life’s daily rhythms are snatched from us. It’s just a trip to the shops, but of the infinite things Alzheimer’s takes from its sufferers, it’s perhaps the loss of those domestic routines that can make the world seem suddenly, irrevocably smaller.
‘Every morning, the houses have to come, one way or another, to get some groceries,’ says Mathilde Charon-Burnel, communications director for the village, which is a kind of dementia utopia. Founded as an experiment, it represents an alternative to a traditional care home, something more akin to a resort or a purpose-built village, with every element designed entirely with Alzheimer’s sufferers in mind.
‘It’s an exercise. Do you feel good enough to come here? Do you feel well enough to remember the list? Can you read the list? Can you count?’
Shopping tells the villager something about how they’re coping. It also connects them to an old life – one where they were in control of how they spent their day and what they had for lunch.
‘It’s quite simple,’ says Francis, as he and Véronique stroll from the shop to the restaurant for a coffee, ‘if you stay in your room all the time, you’re not really living your life, are you? You have to go outside. I go out regularly. I have the good fortune not to be too affected by the disease; I still have some of the capabilities that I had in my life before, when I worked, because I was responsible for a relatively important company. I came here because it was no longer possible to live alone.’
Francis is 72. When I first meet him, it isn’t immediately obvious if he is a resident or a volunteer. He seems sharp and confident, with a twinkle in his eye and an infectious energy. He seems to wear his illness lightly. In fact, it’s only after we’ve been speaking for half an hour that I can spot any sign of the disease that, slowly but surely, is taking hold.
‘There are others for whom things are more complicated,’ he says, offering me a little nougat chocolate. ‘The autonomy that has been put in place here, it permits people to exist. It’s important. It’s very simple – I’m a resident, I’m ill, not too badly, but I know I’ve been ill for a long time.’
Living here, Francis says, gives him ‘access to a life that is relatively normal’.
In the world of Alzheimer’s care, words like normality, autonomy, freedom can be foreign concepts, but they’re the pillars on which the Village Landais is built. France isn’t so very different from Britain – like us they have an ageing population with increasing levels of dementia and limited resources to give sufferers (and their families) the kind of safe, dignified final act that they deserve.
There are expensive private care homes, insufficient state-subsidised care homes (in 2018, nursing home workers went on strike, protesting shortages), a stretched health service attempting to deliver care in the community, and an awful lot of pressure on family members left to pick up the slack. Of the 600,000 people who live in elder care facilities in France, roughly half have dementia. In Britain, around 70 per cent of our care home residents have dementia or what the Alzheimer’s Society characterises as ‘serious memory problems’. The charity estimates there are currently around 900,000 people living with the disease in the UK. By 2040, they predict that number is likely to have surpassed 1.5 million. France is on a similar trajectory.
Village Landais was the brainchild of a former deputy of the département of Landes, the late Henri Emmanuelli, who had read about pioneering Alzheimer’s villages in the Netherlands. Emmanuelli (who died in 2017, three years before the Village Landais was finally realised) had grown up poor, with a childhood disability that left him with a personal passion for democratising care. Conscious of the ageing population in the Landes, he sent a team to Holland to investigate if the same could be done in France.
The idea was to establish a new kind of care home, where residents (even those with advanced Alzheimer’s) would be able to live as independently as possible within the safety of a secure compound. Rather than spending their days shut away in their rooms or sitting in an armchair in a communal television area, people would be able to walk freely through the grounds, pop to the library or the shop, visit the salon to get their hair cut, sit and have a coffee with a neighbour, all while expert carers, volunteers and medical staff were on hand in the background, gently supporting and guiding, stepping in should anyone need assistance.
In 2016, Emmanuelli set the wheels in motion, allocating a chunk of his budget to building this little neighbourhood on 17 acres on the outskirts of Dax. It cost more than €28 million to construct – much of which was state funds (the French government considers the village a ‘pilot project’). Researchers were brought on board from the local hospital and the university in Bordeaux to study how a more holistic approach to Alzheimer’s care would fare.
In June 2020, the Village Landais opened to 120 residents, all with varying levels of the disease. It has been so successful that they have had applications from people who are trying to get French citizenship in order to qualify.
The concept is simple: allow people to keep their autonomy in an environment that is peaceful but stimulating, safe but not medicalised, and you stand a chance of alleviating some of their symptoms. At the very least, you’ll improve their quality of life.
Gaëlle Marie-Bailleul is the medical co-ordinator, a specialist in geriatric psychiatry. For her, the results so far are extremely promising. ‘What all carers want, what everyone wants, is to reduce their struggles, to improve their quality of life, using the least drugs possible.’ If you could cure Alzheimer’s, she says, that would obviously be a good thing. ‘But we aren’t in that area of research. We’re in the area [that asks] can the environment – be it human, material, social – improve the illness when we have it?’
She spends her days visiting villagers, observing and working with them when they’re struggling. Alzheimer’s sufferers can experience hallucinations and become distressed. ‘I then help that villager and the team to make improvements. Often the consultation happens while we go for a walk outside, not in a formal way like in an office.’
When they first opened, family members reported huge improvements in the mood and communication skills of their loved ones after just a few weeks. ‘For a lot of people, we have been able to decrease the number of medicines for anxiety and depression,’ says Marie-Bailleul. ‘Because they feel better. Less lost in their life, because they have less pressure from a world they can’t comprehend.’
Does she think this model could be replicated everywhere? ‘Yes, you just need to adapt the culture.’
The total daily cost to live in the Village Landais is €65.42. Around €2,000 (or roughly £1,750) a month, then, pays for good food, a comfortable, well-designed home, endless activities, access to a library and a cinema, a lovely garden to walk in, a kitchen garden to potter in, a donkey and chickens to visit, not to mention round-the-clock medical and psychological support. The requirements are minimal – as long as you have a diagnosis but still have some mobility you are eligible to live here (you need to be able to get around at least a little to be able to make the most of the village).
You can’t currently move here with a partner unless they have Alzheimer’s too. ‘We had someone who was already advanced, and his wife also has Alzheimer’s but she could take care of him. We took both of them,’ says Charon-Burnel.
The places are means-tested, geared towards people who can’t afford expensive private care. If you can’t afford the maximum monthly fee it can be modified to ‘as low as €250 a month’.
Age UK says the average cost for a care home place in Britain is around £800 a week – over £1,078 for a nursing home. The average cost ‘varies drastically’, they say, depending on where in the UK you live, ‘creating a postcode lottery for vulnerable people in need of care’.
The Village Landais has more than 120 staff and volunteers to match the 120 residents. ‘It’s twice the rate of private retirement homes,’ says Charon-Burnel. ‘The more people you have surrounding them the more you can answer to their personal needs, so this is where the volunteers come in. They can maybe just read the newspaper or play the guitar with someone.’
The staff are an unimposing but constant, reassuring presence. Unlike most medical settings, this isn’t an environment built on a hierarchy – no one is obviously in charge, the doctors don’t wear white coats, no one has a uniform or a tag with their title on it. ‘It means no one is more important just because they have a white jacket,’ says Charon-Burnel. The idea is ‘to take out anything that could look like a hospital’.
‘Even in the houses there is nothing medical. If we need to have medical stuff, we take it with us.’ Are there panic buttons in the rooms? ‘No, it’s not needed.’ And if someone falls? ‘Well, there are always people around. Each house has two carers at all times of the day, so people are not alone, they’re free to meander at will.’
It also helps to ‘balance the relationship between people’, she says. When you make your way around the village, you don’t immediately know if someone is a doctor, a psychologist, a cook, a volunteer, a resident. ‘You have to speak to them, you have to create a link.’
It’s a small way of giving the villagers some of their humanity back, she adds. ‘It re-establishes their self-esteem, because they are somebody, just like the doctor is somebody.’
Is it likely they will eventually end up in a hospital, or can they live out their days at Village Landais if they want to?
‘We are here to welcome them until they die. They are at home, and most people want to die at home, they don’t want to die in a hospital.
‘If they go to hospital they are completely lost and panicked, and also the link with the family is not the same in a hospital. Here, the family can stay. If they have to stay a whole week to be sure that they’re here at the right moment, they can. It’s really important for people to be there for the last moments.’
Francis takes me to his house (one of 16) that he shares with 11 others. Every inch has been built with Alzheimer’s sufferers in mind. It’s on one floor, it’s light, homely and simply decorated, with clever half-height walls in the communal area so you’d never feel hemmed in. The furniture is functional but stylish. Nothing looks medicalised or remotely sad. The bedrooms have en suite bathrooms and are filled with the resident’s things from home. A little alcove outside each bedroom can be used for trinkets and photos, signalling whose it is.
Everything can be adapted – the mirrors can be taken away, for example. ‘There are people who don’t like to see themselves,’ says Charon-Burnel. ‘When the disease gets worse, some people don’t recognise themselves, so it scares them.’
‘The villagers live at their own rhythm,’ explains Nathalie Viard, 38, one of the house’s two carers. ‘They get up when they want, they go for a walk when they want. It’s as if they were at home.’ I wonder what she considers her main role to be. ‘Companionship.’
In the few hours I spend in the village, I see people of all ages (the youngest resident is just 35) and at every stage of the disease, from those that might need some help to eat and get around, to those perfectly capable of taking themselves off to the library for the afternoon or attending a dance class.
As we leave the house, we are followed out by Fréderic, who had been napping in an armchair. It’s a beautiful day and he must fancy a walk. He doesn’t tell anyone, doesn’t ask permission – he just walks (albeit very unsteadily) out of the house. I turn to Charon-Burnel, wondering if we should tell someone. A carer soon follows with his jacket, helps him put it on, then leaves him to his stroll.
‘We pay attention to people,’ she says. ‘If I hadn’t noticed he was out without a jacket, somebody else would have.’
That freedom to do as you please is integral to the thinking behind the village. For Fréderic, going for a walk could turn his day around – cumulatively, it could even have an impact on how quickly his disease progresses. Could he fall over? Yes. ‘With freedom comes risk,’ says Charon-Burnel. ‘The question is, do you want to live if there is no risk?’
As Alzheimer’s marches on, your vision can narrow. People with the disease often find they lose their peripheral sight, which might mean they walk in straight lines, or round in a circle, and get lost easily. I can recall one afternoon years ago when my grandmother was in the early stages of dementia and only just managing to live at home around the corner from us (with a lot of support from my mum). There was a knock at the door after school. It was a police officer and, behind him, Nanna, covered in what looked like soot and looking very cold. She’d been spotted walking down the side of the A4, a good half hour from her house in west London.
I was 13 but can still remember how desperate it felt. The thought that she could have been knocked down was awful, but worse was the idea that she’d been scared and confused.
I cried when mum told us Nanna was to move to a care home nearby, though I could see it was the only option. For the year she lived there before she died she was given what mum describes as ‘tremendous’ care. My memories of visiting Nanna there are oddly vague – more a set of images and a feeling of tension.
People often talk about the sadness or stress that can hang in the air in a care home. Walking around the Village Landais, I would say that the opposite seems true here. It is extremely peaceful. Looping paths carve a winding route through the park. ‘So people can meander,’ says Charon-Burnel. ‘You can always spot them, even if they are far. You can keep an eye on them.’
Another option for the residents is the stationary train carriage in the middle of the library. A screen inside plays footage of rolling countryside. It’s a therapy tool – psychologists have found people feel less anxious when they are on the move – they can close the door for 20 minutes and go on a journey.
It’s lunchtime and in the restaurant villagers who have family visiting are sharing a meal – spiced chicken and couscous followed by tarte au citron. One woman is sitting with her mother, who has been here for two years. She lives in Paris but visits often, staying in one of the rooms available to family members. Her father died in 2015 and her mother had been struggling. ‘Mum was at home until 2020. It became a bit difficult to be alone, even with carers.’ Here, she says, there is ‘so much kindness’. ‘She participates in activities. There are parties – we’ve even danced, haven’t we?’
Nearby, Nathalie Lagaüzère’s salon is like something out of Amélie. Accordion music is playing on an old record player, colourful art lines the walls. Clients sit in a gold chintz armchair chatting or just enjoying the music while they wait to get their hair cut. Jean-Philippe Cougrand comes here whenever he is feeling blue. He is 63 and has lived here for 10 months.
‘He was diagnosed when he was 57,’ says his wife Maria, visiting from Bordeaux. ‘I gave him the choice. Jean-Philippe is young – he could still have years of life, with activities adapted to his illness. So one day I proposed this place to him. He said, “OK, when are we going to live there, the two of us?”
‘I had to say, it’ll be just you. He said no. Then a week later he said, “I’ve reflected and I’d like to go.”’
Every other week, Maria, 64, drives two hours to see him, staying two to four nights. Their daughters, 29 and 30, were upset at first, fearing he would be too far away. ‘It’s not our comfort that’s important, it’s his,’ says Maria. ‘It’s his daily life. I don’t regret it. And now they’ve been persuaded.’
Nathalie begins washing Jean-Philippe’s hair. ‘When I come here it does me good too,’ says Maria, her eyes filling with tears. ‘People are so kind and sympathetic. [Everyone] from the volunteers to Nathalie to the nurses – when I’ve been here a couple of days I feel the benefits of that too.’
I hold her hand. Living here has been good for him, she says. The disease surges on, but he is undoubtedly happy. ‘We can’t fight it,’ she says, ‘we can only accompany them.’