How Do We Care For Family With Dementia? (Part 2)

Dementia used to be dismissed as normal memory loss, a side-effect of ageing. People tended to die of other causes, much younger, so it was less understood. When German psychiatrists Alois Alzheimer and Emil Kraepelin classified it as a disease in the early 20th century, they focused on younger patients. The deterioration of the brain in old age was still regarded as an inevitability. But by the mid-50s, US hospitals began to be overwhelmed by elderly dementia patients. Psychiatrists started to frame it as a psychosocial problem, finding that people from some backgrounds, with the same brain changes, did better than others. There were calls for programmes of activities to keep ageing minds stimulated. After Medicare, the US healthcare programme for the over-65s was founded, people started to live even longer lives – and dementia soared. By 1980, everybody had heard of Alzheimer’s disease. Funds have been poured into research, mostly to find a pill to reverse it, without success. Patients like my mum, who get a diagnosis, are prescribed a single drug, supposed to help slow the disease, and sent home. There is nothing more the NHS can do, or afford. Age UK and Alzheimer’s charities offer helpful advice, but you have to seek it out.

A third of people with dementia are in care homes, which seek to calm and stimulate residents whose memory of the recent past goes first. The walls are lined with photographs of Charlie Chaplin, Ava Gardner, the Queen as a girl. There are wartime singalongs. Living in the past is fine, as are white lies. We take Mum out for ice-cream and cakes at a garden centre, where last time she was overcome by the beauty of the flowers. “I can’t believe it,” she kept saying. We stay in the present moment and talk about the mackerel sky and the planes she thinks are birds. We never talk about dementia. The truth used to be served up cold. “Reality orientation” was developed in the late 50s, on the basis that exercising the memory would keep it functioning better for longer. Patients were trained to know the name of the place they were in, what month it was, who the prime minister was – but it was confrontational and insensitive. If people knew that it was Thursday and that they were widowed, it didn’t make them happier. Instead, the focus moved to cognitive stimulation – gentle activities to keep the brain going, such as word games, puzzles, music, and practical activities such as baking or indoor gardening. A Cochrane medical review in 2012 found that 45-minute sessions at least twice a week helped people with mild to moderate dementia. There was some evidence that people were better able to reason, communicate and interact with others, and had a better quality of life. Such activities are now standard in dementia homes and day centres, along with dancing and gentle exercise and singing, all of which Mum loves. And how else would she spend her time?

There are other theories. Penny Garner in Oxfordshire, whose mother had dementia, devised Specal (originally an acronym for specialised early care for Alzheimer’s) to help families and carers communicate with a relative who has dementia. At the heart of this is the photograph album – the concept that people have memories stored like photographs, recording feelings as well as facts, and that when the facts disappear, the feelings remain. Garner considers dementia a disability and has three golden rules: don’t ask questions that will only cause distress when the person cannot find the answer; listen to the person with dementia and offer them only information that will make them feel better and do not contradict. Her son-in-law, the psychologist Oliver James, wrote a book about the method, called Contented Dementia, and many of its adherents are enthusiastic. But the Alzheimer’s Society is outright opposed, arguing that not asking questions deprives people of choice and control over their lives. The Society is not enthusiastic about the idea of dementia villages, either. Dominic Carter, its Senior Policy Officer, agrees that people have to be understood, offered activities and encouraged to eat and drink, but thinks it is “a shame if we are willing to accept that the only way to do that is to segregate people and have them in environments that are so specifically focused.” Instead, the Society wants to normalise dementia, with a flagship programme to accredit “dementia-friendly communities” – ordinary towns where the baker and hairdresser have been taught how to talk to people with dementia, and where local residents and bus drivers will be better able to see them safely home. So far, it has registered 400 communities, from Minehead to Billericay and beyond. Local Alzheimer’s groups enlist shops, GP practices, libraries, churches, fire, police and social groups, whose members undertake training. There are also activities. Over one week in May, in Tamworth in the West Midlands, there was singing in the shopping centre and community knitting of forget-me-nots to aid the Society’s dementia campaign, which includes a call for a £2.4bn government fund to help people with care costs.

People with mild dementia will be safer and happier in a town that has more understanding, although the chances of getting lost in a city like Leeds must still be high. But as the disease progresses, the need for full-time care grows. While we might dream of Grandma sitting in a corner of the family home, watching life going on, being looked after by her children, that’s a fantasy, says Professor June Andrews, former Director of Stirling’s Dementia Services Development Centre in Scotland. “It’s never been families taking care of their own,” she says. “It’s been, women. The extent to which it happens is related to the economic value of women.” In countries where women are uneducated and unemployed, they do the caring, she says. “As soon as the daughter or daughter-in-law can get a job, they start importing a foreign domestic worker.” And once those salaries rise out of reach, care homes spring up. In the UK, there will be a shortage of 30,000 residential dementia places by 2021; the costs remain high and the quality is sometimes questionable. The Care Quality Commission reports that more than a fifth of services either require improvement or are inadequate. Is the Hogeweyk model the answer? It has been controversial since its inception in 1993. Medical experts didn’t like it, while other care homeowners feared for their own business model. In the UK, the notion of a dementia village has been dismissed as gimmicky and too expensive – often by experts who have not visited. Although it is run as a not-for-profit, the cost for each resident is £53,000-£59,000 a year, paid for by the government. Local authorities in the UK pay about £30,000 to £40,000 for a residential care home place.

Andrews is sceptical of the Hogeweyk’s “lifestyles” approach but says her own parents – a bus driver and a secretary – would never have been comfortable in a posh care home. “Having something that fits with what somebody is comfortable with is really important,” she admits. But how would you categorise people in the UK, or find the volunteers the Hogeweyk relies on? “The bottom line is, who is going to be able to afford your model if it can only work with an army of volunteers? In the UK, hundreds of care homes are having to shut down because their buildings are not the right quality and they can’t get the right staff.” But New Zealand and Australia have similar villages, and the first to be modelled directly on the Hogeweyk is likely to open in the UK later this year, in east Kent. Henry Quinn and Dr Phil Brighton, from East Kent Hospitals Foundation NHS Trust, tell me they were profoundly moved when they visited the Hogeweyk in 2015. “What struck me most was when they said, ‘The most important things are the front doors.’ If you have a front door and it’s raining, you can go out and get wet,” Brighton says. Quinn went up on to the roof of Buckland hospital in Dover and spotted six semi-detached blocks of derelict houses. They got funding from Europe and are on track to open soon. “It’s a gated community,” Brighton explains. “There will be a boundary fence but not obtrusive or oppressive.” There will be a hub where locals and residents with dementia can go for entertainment, as well as a cafe and a gym. The houses will have five bedrooms each and no locked doors. The team are exploring ideas with the local community, including keeping goats and forging links with a primary school, bringing children in for activities. If we let them, people with dementia take buses to the end of the line. One man used to global travel, evaded his carer, travelled to the airport and hopped on a plane to the country where he grew up. People in residential homes used to be restrained, tied to chairs. That doesn’t happen anymore. In the dementia-friendly communities, the Alzheimer’s Society promotes, technology might allow more wandering. There are already GPS devices, informing relatives of people’s whereabouts – whether they want it or not. And that is the hardest part: knowing what someone wants. We make decisions for those with dementia in the hope of protecting them. Sometimes, when you hear of a woman, such as a friend’s mother, rocking in her seat, whispering, “Help me, help me,” you have to wonder if we have got it right.

My mum hates locked doors. When she lived in her flat, there wasn’t a day when she didn’t potter to the local shop or get the bus to town. It saddens me to see her wanderings reduced to a corridor and now, even though she is in a safe place with wonderful carers, she is starting to fall; last time I visited, I found her with bruises in another resident’s room, as she frequently is. And for the first time, I did not get the sense that she knew who I was. For Spiering, caring for people with dementia is all about calculated risk – “accepting frailty and that, in nursing homes, people are going to have fallen and are going to die, and we can’t prevent that. But we can add quality of life. And it’s not by locking them up and not seeing them as human anymore.” My mother is well looked after, by people who see her as human and lovable – but I am disturbed by her constant desire to leave. I want her to be safe, but even more than that, I don’t want her to be unhappy. Most of all, I want her to live the life she wants, in the little time she has left. And it hurts that she can’t tell me – even if she knows – what that is.

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