How Do We Care For Family With Dementia?

She grips my hand and tows me behind her around the small courtyard garden, past the pretend bus stop and the red phone box with no dialling tone, down an alleyway of gravel that leads to a wooden gate. “Here,” she says. “It may be locked.” It is, of course, securely padlocked. It’s hidden away but still Mum has found it. I take her by the arm. “It’s OK. We can get out the other way,” I say, leading her inside, through the chintzy cafe where no money is exchanged, to the lift. I bleep my electronic visitor’s pass. The doors to the outside world open for us. Mum walks through them, asking no questions, and admires the flowerbeds. Even though she cannot remember what happened 10 minutes ago or when she last ate, even though this once immaculate lady, left to herself, would head for the street in a petticoat and one earring (“But it doesn’t matter, does it,” she said when I mentioned it), in spite of the holes in her mind that dementia has torn, the desire to go out appears hardwired. She found that gate, and then she remembered where she had found it. Earlier I watched as Jean, Mum’s neighbour in the dementia home, walked up and down the corridor between her room and the communal area, tall and thin in her plaid skirt and jumper, the usual copy of the Times under her arm and anxiety on her face. Up and down. Back and forth. “Has my mother come?” she asks the carers. “No, I’m afraid your family aren’t visiting today,” is the answer. Her mother died years ago. They sit her down, suggest television or a game, and she is instantly on her feet, asking the same question again.

Dementia is the scourge of our age. We have become so good at patching people up bodily that for many, it is the mind that goes; dementia now kills more people than any other disease in England and Wales, accounting for 12.8% of deaths last year. In 2017 it affected an estimated 50 million people globally, with nearly a million in the UK; the numbers are expected to double every 20 years. David Cameron launched a research push for a cure in 2012, but one drug trial after another has collapsed, casting doubt on fundamental assumptions about what happens in the deteriorating brain. The central approach – targeting the build-up of amyloid plaques – appears to be going nowhere much. Meanwhile, less attention is being paid to how we care for those whose minds are irretrievably unravelling, to where and how they should live. Most people in care homes – 70% – now have dementia. It may be best for many to stay at home as long as possible – but that means 24-hour care. The distinction between day and night can disappear. One of the first warning signs my three sisters and I had come when Mum started annoying the neighbours in her block of flats, pressing doorbells to be let back in at 5 am. Then there were the parcels. I drove her home one day, to find a large brown box outside the door. “Oh no,” she said, in genuine distress. “Not another one.” It contained what she and I would both have called quack remedies for ageing: potions and pills, and a Christmas cracker trinket of a bracelet. Inside was an invoice, paid on her credit card, for over £100. She had not ordered or paid for it, she insisted. And there were others. She had a cupboard full of expensive soaps and knick-knacks – a “sound amplifier” for £30 (there is nothing wrong with her hearing), a “cabbage detox” for £20. It had all been sent by two companies at the same address in France. I was livid. How dare they take advantage of her? But I now think she started it, sending off magazine coupons for hand lotion, though I know they got her to order more junk thereafter.

It’s odd how the signals are there, but you don’t see them. The flat smelling of burnt toast. I bought a new toaster. Her empty purse when she went out for coffee with friends. They paid. Her frequent trips in person to the bank. It didn’t occur to me that she no longer knew her pin number. The huge bills she was running up for newspaper delivery. The shopkeeper kindly said nothing. The frightening times I called in the evening when it was dark, and there was no reply. Finally, she would answer, out of breath. She had taken the wrong bus. One time she said a nice man had driven her home. Eventually, my sisters and I understood she was no longer safe alone. She resisted any suggestion that she had a problem. “I haven’t got that dementia,” she told me, sternly. But she agreed her memory was playing up. I used that to trick her into a GP appointment and referral to the memory clinic, where she was diagnosed, although no help was offered. We bullied her into twice-daily visits from a carer, who would sometimes arrive to find Mum missing. At Christmas at our house, she caught a virus and ended up in hospital wandering the corridors at night. Staff refused to let her home without full-time care. Mum hated losing her independence, the same way she had fought us when we “borrowed” her car a couple of years earlier and did not return it. I asked the carers to let her go – but follow her. At the home, where we moved her a year later because of her night wandering and to be closer to my sisters, only the corridor and patio garden are open to her. She is not deceived, though she can no longer tell you what’s wrong. She is a “sundowner”: after tea, she will walk and walk, up and down the corridor. The challenges of caring for people like her in the way she would want, if she were able to explain it, are great.

There may be another answer. In a suburb of Amsterdam, Jannette Spiering sits at a cafe table in the sunshine, while women like Mum and Jean wander past. Spiering is the founder of the Hogeweyk, a dementia village whose fame has travelled the world. She used to help run a conventional care home on the site, which was torn down and believed she could do better. “We can try to come as close to normality as possible within the restrictions people with dementia have,” she explains. “These are mostly that they can’t make their own daily structure, and they don’t know when to eat, how to cook, how to dress, how to communicate. If they choose to go outside on a day like this, that’s not for us to decide. That’s why the front door of every house is open. We have to take care, if it’s cold, that people put a jacket on and that their shoelaces are tied so they won’t fall over them. Of course, when people move in, they want to leave. I think I would, too, if I were locked up. But what I think is so lovely is you can go outside without someone watching or walking with you.” This is not a village in the traditional English sense. The houses, restaurant and a small theatre form the Hogeweyk’s perimeter wall. Look up and you see it is sandwiched between blocks of social housing flats. But there is space and sky. There are little gardens and a pond with statues of herons – and a real one that takes off as I walk by. The 23 houses, each for six or seven people, are different and separate but joined as they might be on a terraced street. Outside are shady courtyards with wooden tables and chairs, flower tubs and trees. The Boulevard looks like a town street, but behind the shop fronts are clubs. There’s the Mozart room, where classical music lovers meet. There is a painting and baking club, which Mum would enjoy, along with any sort of singing. She croons with Frank Sinatra and bops gently to Rock Around The Clock, given the chance. At the Hogeweyk, families sign up their relatives for the clubs that will suit them, though too many activities can exhaust people, Spiering says.

In the square, cafe tables are set beside a fountain. Off it is an arcade, with a waiter-service restaurant and a supermarket where the carers shop for each house. If residents wander out with a packet of cereal or a bottle of juice, it can be returned or paid for later. And there is a pub: there is no reason why people with dementia shouldn’t enjoy a drink, although one daughter was scandalised that her non-drinking mother developed something of an advocaat habit. “She blamed us, but her mother just liked going there, attracted by the music or whatever,” Spiering says. People can change for better or worse; some start to use bad language; inhibitions disappear. The Hogeweyk has its wanderers. A woman with Jean’s tense face walks the village paths stiffly and finally passes through sliding doors into the reception area, ignoring the notice that says “Sorry, we’re closed.” Behind their glass screen, the staff watch. She gets halfway to the double doors on to the street, which will not open unless the receptionists press their button, stops abruptly as if she has remembered something, turns around and walks back into the village. One of more than 100 unpaid volunteers intercepts and takes her for a coffee, to distract her. “There is still some part of her mind that recognises this is not her home and she can’t accept it. I think it is very sad,” Spiering says. Some residents walk all day long, so there are distractions to encourage rest: a large TV screen with seats in the arcade, and cafe staff instructed to invite wanderers in for a drink. There is an element of the gilded cage of the 60s TV series The Prisoner, or The Truman Show, but while residents can’t get out, the outside world is invited in. Young mothers and toddlers meet here weekly. Locals use the restaurant and go to the theatre.

The Hogeweyk is not for the mildly ill. Everyone here has late-stage dementia. The average stay is 2.2 years, but some people die within a few weeks. Only three out of 169 residents are in bed all day, Spiering says, and these three are not segregated. “We put them in the living room with their bed, because they can still smell and hear what is going on and be part of it.” There is no sign of the agitation or aggression that often signals distress in people with dementia, no howls of anguish through an upstairs window. Instead of the severity of the disease, as in the UK, the Hogeweyk allots residents to houses according to “lifestyle.” It’s not a class thing, Spiering says, nor anything to do with race: it’s about familiarity with your surroundings. The families choose which lifestyle is the best match. There are seven – urban, artisan, Indonesian, homey, Goois [a wealthy area near Amsterdam which once had its own dialect], cultural and Christian. The urban houses are home to former city dwellers; the artisan houses to people who had a trade or craft. The homey houses are for people, like my mum, who were homemakers; those who loved theatre and cinema are in the cultural houses. The decor and food will be typical of those communities. Some will prefer meat and potatoes; others are mostly vegetarian. The music is folk in some houses but classical in others; the newspaper on the table will be a tabloid or broadsheet. Such segregation has its critics, but Spiering argues it is just what we all do for ourselves. We buy into certain lifestyles or move to be part of a community we feel comfortable in. It doesn’t mean people won’t mix at the bingo group. There may be an element of fantasy, but it is no more than in more traditional dementia homes – such as my mother’s, where people like Jean walk an endless loop of corridors decorated to look like a high street, with Singer sewing machines in alcoves and pictures of the Coronation to recall an epoch that is more vivid in the brain than the recent past. Reality is a tricky concept when it comes to dementia care, as Spiering points out. Some people want to go home or wait for a visit from their long-dead partner. “We try to distract people, or we go along with them. We say, ‘Is it OK if we go for lunch first?’ You can say it’s a lie or you can say it’s not telling the whole truth.”

Read isisHow Do We Care For Family With Dementia? Part 2 tomorrow.

Credit: Sarah Boseley and Robin Hammond for The Guardian, 28 September 2019.