This page shows the latest items from the Guardian Dementia newsfeed.
Buildings designed to bring the benefits of the outdoors indoors give people happier, healthier lives
“I love the space all around here,” says care home resident John Ryan. “Previous homes I have lived in have been large, Victorian-style houses and in the garden you would have a monkey puzzle tree with a little area to walk around in a circle, and that’s it. Very boring.”
The 85-year-old is anything but bored now. As he reminisces about his younger days travelling the world with his wife and working in agriculture, he pauses now and then to play a fish-themed game on the interactive table in front of him. When another resident joins him, the game is changed to a gentler challenge – painting colour on to a blossoming tree. It is one of a number of nature-themed activities residents at West Hall care home can take part in, from bingo and pub quizzes to art.
From a psychologist’s account to a picture book, the author of Elizabeth Is Missing shares titles that explore the physical and emotional impact of dementia
Nearly a million people are living with dementia in the UK, towns from Skipton to Falmouth are becoming “dementia friendly” and care homes are engaging residents through poetry classes and pony visits. As the ignorance and stigma begin to fade, studies of the condition proliferate and it has developed from an unspoken possibility in literature – is King Lear a study of declining brain function? – to a major plot device.
When it comes to practical help, few books can improve on psychologist Oliver James’s Contented Dementia. James argues that it is better to indulge a loved one than insist on brutal truth and make every encounter into a battle, constructing his argument through case studies that offer examples of difficulties as well as success. There is no single version of dementia, and no one prescription, but James encourages carers to respond with flexibility and love.
As a nurse I’m used to dealing with illnesses, but not enough is known about this cruel disease. I want to increase awareness
My daughter Anna was 36 when she started to exhibit strange, inexplicable behaviours, both at work and at home. Anna was a clinical trials research nurse in a busy hospital. She was also a wife, and a mum to two young sons.
Her behaviours escalated to the point where it was not safe for her to be at home. She would clap, bang her head, whistle, wail, take off her shoes and run like a child in the hospital corridors, eat any food she could lay her hands on, bite and chew inappropriately. Worse than that was her complete lack of empathy and inhibition. She was forced to give up her job and had to come and live with us, her parents.
When an elderly American with dementia was found near Hereford in 2015, it created an extraordinary international puzzle. Who put him there, and why?
There was something not quite right about the two men struggling out of Hereford bus station on a blustery day in November 2015. The dark-haired one was wearing what appeared to be military fatigues; his much older companion seemed confused and barely able to walk. A concerned passerby went to help. The younger man, who seemed to have an American or Canadian accent, explained that he had found the older man face down on a country road and was taking him to Hereford county hospital. She walked with them, doing her best to support the faltering older man, who could not move more than a couple of paces unaided. As the three of them approached the turning to the hospital, she flagged down an ambulance. The paramedics suspected dementia and assessed the older man in the rear cabin; he seemed to be smiling and crying at the same time. He had no ID and could only give his first name, Roger.
His companion, sitting opposite, told the crew the same story: he had found the man on the side of a road some distance from Credenhill, a village on the outskirts of Hereford. But he claimed he couldn’t share his own contact details because he had been working at the nearby SAS base, and soon vanished into the early evening gloom.
How did it feel to leave a confused, distressed old man? ‘It was one of the hardest things I’ve had to do’
Hayes talked of a glamorous life in LA and being on an SAS course when he found Roger. But his story began to unravel
Hayes says the only lies he told were to protect Roger and his family. Did his friend take advantage of him? ‘Probably’
When he recently stayed in a care home to experience life as a resident, Jeremy Hughes witnessed the admission of an elderly woman from hospital. Before she was even shown her room, she and her daughter were taken to the manager’s office and asked how they intended to meet the difference between the home’s fees and what the council was prepared to pay on her behalf.
“The inhumanity when people are under enormous stress has got to end. We cannot put up with that,” says Hughes, chief executive of the Alzheimer’s Society, the UK’s leading dementia charity, which this week celebrates the 40th anniversary of the letter that led to its founding. The charity wants social care reform to be as big an issue in the general election campaign as it was in the 2017 contest.
Forty years ago this week, Morella Kayman (then Morella Fisher) wrote to every British national newspaper to describe the eight-year nightmare she had just endured as her husband Lawrence succumbed to early onset dementia. She and her daughter, Mandy, had been left to cope with his increasing incapacitation with little help, support or advice from doctors or social services. It was a gruelling experience.
After Lawrence, who had begun to develop symptoms at the age of 51, was taken into a nursing home, his wife decided that other carers of people living with dementia should not share the same experience as she had, and in her letter outlined plans to set up a society that would raise awareness, provide information for families and generate funds for research. Her plea was taken up by the Observer’s medical correspondent Christine Doyle, who wrote a feature, The Sad, Quiet Epidemic, which outlined Kayman’s plight – and her plans.
A landmark study confirmed what many – including the family of West Brom and England legend Jeff Astle – long suspected
So now we know. Revealed last week, the results of a landmark study into the relationship between football and brain damage confirmed what many in and outside the game have long suspected: former professionals are significantly more likely to suffer from dementia and other serious neurological diseases in their later years. Three-and-a-half times more likely, to be precise. The research project, conducted over nearly two years by the University of Glasgow’s Brain Injury Group also discovered a five-fold increase in the risk of Alzheimer’s, a four-fold increase in motor neurone disease and a two-fold increase in Parkinson’s. What football – those who play, coach and govern the sport – decides to do with this crucial information remains to be seen but recent history suggests any real progress in the field of player safety will be made at a glacial pace.
Dawn Astle spent time on the night of her 34th birthday alone with her father, who had just died after choking during a family dinner. Frantic efforts by relatives and paramedics had failed to save Jeff, the former West Brom and England legend who, at 54, had first begun to show symptoms of the brain damage that would eventually lead to his death. Diagnosed with early-onset Alzheimer’s, his descent into utter helplessness was swift and before his death five years later he was incontinent, barely able to feed himself and had no idea who he or anyone around him was. In Michael Calvin’s book State of Play, Dawn tells the author that as her father’s body lay in repose she swore an oath on his behalf. “If football has done this to you, Dad,” she said. “I promise you I’ll make sure the whole world knows and I’ll get justice for you.”
Scientists have conducted a series of trials that point to various ways to check the progress of the disease
Last week, a US biotechnology company claimed to have produced the first drug with the ability to slow down the development of Alzheimer’s. Biogen says it hopes to release aducanumab on to the market after it gets US Food and Drug Administration approval, which could take up to two years. Research into the drug had been abandoned but trials using higher doses of the drug are claimed to improve cognitive functions such as memory, orientation, and language.
• Four-fold risk of Alzheimer’s and motor neurone disease
Former professional footballers are three and a half times more likely to suffer from dementia and other serious neurological diseases, a landmark study has found, confirming a long-suspected link between the sport and brain damage.
A 22-month research project by the University of Glasgow’s Brain Injury Group also discovered there was a five-fold increase in the risk of Alzheimer’s, a four-fold increase in motor neurone disease and a two-fold increase in Parkinson’s.
Dutch government warns there will be 75 million people with condition worldwide by 2030
Dementia poses a threat to global health on the same scale as HIV and Aids, the Dutch government has said, warning that the number of people with the condition will not be far off the population of Germany by 2030.
In a speech to the World Dementia Council summit in Japan on Friday, Hugo de Jonge, the Dutch health minister, said dementia was underfunded, misunderstood and overlooked, as HIV and Aids were in their early days.
BBC decision to transfer cost of licence fee will hit vulnerable older people hard, says Labour
More than half a million older people with dementia could be forced to pay for their TV licences from next year, according to research commissioned by Labour, findings the party said were “a national scandal”.
Tom Watson, the shadow culture secretary, who has pushed for the government to maintain funding for free TV licences for those aged 75 or over, said the process of applying for a licence could be particularly difficult for those with dementia.
There are five outstanding nominees for this year’s prize, decided by public vote
Five nominees have been shortlisted for this year’s public servant of the year award. Voting is now closed.
Our final winner will be a public servant who has contributed outstanding work and made a real difference. The five candidates have been chosen by our judges and all have met the award criteria. They all:
embody the very spirit and ethos of public service
have gone the extra mile for service users and made a real difference to outcomes
have overcome challenges in their public service role
When her mother started to forget, the Guardian’s health editor began to examine how we look after loved ones living 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.
Alzheimer’s charity says people forced to quit or change work hours to care for loved ones
Businesses in England lost £3.2bn last year because people had to leave their job or change their working patterns to care for someone with dementia, a leading Alzheimer’s charity has said.
Of the 355,000 people of working age caring for a loved one with dementia, more than 147,000 have had to reduce their work hours or have had difficulty balancing work and caring. More than 112,000 people had to give up their job in the past year, with many retiring early because of their caring commitments.
I thought dementia was all about losing myself, but I have found sides to me I never knew I had
It was at work where I noticed my first symptoms. I was a non-clinical team leader training matrons and sisters in the art of electronic rostering. My girls called me a workaholic. My brilliant memory, the thing I relied on most, started letting me down badly. Simple words failed me in meetings, the names of colleagues I’d worked with for years were suddenly a mystery. I used to take long runs by the river to unwind, but my brain stopped communicating with my legs and I started having falls. I knew somehow that things were not right, but when I finally went to the doctors it took a long time to get the diagnosis. Initially my symptoms were dismissed as age or stress related (I was 58), but I was persistent and knew how the system worked. When I finally received the diagnosis, in 2014, it was devastating but it was also, bizarrely, a relief. It finally put an end to all the uncertainties which meant I could now start planning my life with this new, unexpected label attached.
I was determined to choose a positive path. The very nature of my diagnosis signalled the loss of the old me – my memories, my tastes, my abilities, my plans I took for granted – but, more importantly, it signalled the birth of the new me, a new chance. Many find it hard to believe, but I feel I’ve gained more than I’ve lost.
Shocked at the lack of awareness, I now shout from the rooftops
One thing dementia has taught me is never give up on myself
Kristof Bilsen’s new film is about western Alzheimer’s patients in Thailand. He explains the ‘western gaze’ – and why his film struck a deeply personal chord
‘It’s easy for people to say, ‘We should all care for our loved ones’,” says Kristof Bilsen “But what happens when you can’t?” For his new documentary, Mother, the 39-year-old Belgian travelled to northern Thailand to film at Baan Kamlangchay, a centre for westerners with Alzheimer’s whose families have left them in the hands of Thai caregivers.
The political was very personal for Bilsen. During the three years he made the film, his own mother Rosemarijn was in decline with dementia. “My dad tried to give her home care but he’s 78, so it proved overwhelming,” Bilsen says. “So he visited her a lot in an old persons’ home. The subject of the film is very close to me – the frustration of not being able to care for our most beloved.”
Tottenham Hotspur Foundation’s dementia workshop shows how beautiful game can be good for the mind too
Gary Mabbutt, the former Tottenham Hotspur club captain and England player, looked thoughtful. “A Spurs player with a name starting with Q? Barbara, can you think of anyone?” Barbara Greensmith hesitated, her arms and legs convulsing under the table.
Mabbutt turned to Hirok Moitra, sitting on his other side. “Hirok, any ideas?” Moitra sat expressionless and immobile, staring into the middle distance. There was a long silence. Then Moitra suddenly announced, “Andy Quy.”
Nicci Gerrard writes movingly about the ways that we try to keep dementia at arm’s length (Don’t ignore dementia – it affects us all, 15 August). Dementia is what so many of us fear most about old age. It is a disease of the brain, but its impact is immeasurably different to other physical diseases. It is thought of as a single invasive force, but may affect memory, behaviour, sense of location or speech. Because of fear of the present and the future, many try to hide its development from partners, outsiders and indeed themselves. Above all, the fear seems to be of losing one’s self, the sense of “who I am”.
It is imperative that we talk about dementia, and that we guard against the words that are so destructive of people’s hold on their lives. I remember from a research project the raw pain of a woman talking about the hospital visits when she and her husband found out he was living with dementia. There was a wonderful, warm consultation when the husband pleaded with his wife not to respond to the request to say what was going on. She knelt down at his knees and said: “I’ve got to.” They both trusted the consultant, who did not appear threatening. Other episodes were not like that. On one occasion she asked how best to support her loved one and was told to stop thinking about him as “he has no quality of life”. Another time she wanted to accompany him when he was undergoing tests but was asked not to. He came out crying: “I’ve let you down, sweetheart; I’ve let you down. I couldn’t answer all their questions.” She was angry that she had not been there to hold his hand.
There’s a silent crisis in our midst. Often cunning and stealthy like Grandmother’s Footsteps, sometimes swift and brutal, dementia is all around us. One in eight people die of it. In the UK, a person is diagnosed with it every three minutes. Yet we are still collectively failing to acknowledge this self-demolishing illness, which is now the largest cause of death in England and Wales and the one we most fear. Why?
It is refreshing to see an article about the effects of social activity in preventing dementia on the front page of the Guardian (Social life may lower the risk of dementia, 3 August). The sad fact is that this has been known for many years, including examples such as the Nun Study, which examined the effects of ageing on a group of Roman Catholic nuns in the United States.
So much research on either the cause or the prevention of dementia is too narrowly focused; too much attention is paid to the brain and not enough to the whole person. Research in the arts has already shown how meaningful cultural and social activity keeps people healthier for longer. What we need now is not more research on brains, but increasing investment to maintain and develop our cultural resources and encourage wider participation in the arts. This would help to build social connections between people of all ages, and prevent a host of diseases, including dementia.