This page shows the latest items from the Guardian Dementia newsfeed.
A new training programme in care homes shows how mundane tasks like making a drink or polishing is good for residents’ wellbeing
“When you woke this morning the clothes you planned to wear were gone. The shower gel smelt weird – it wasn’t your usual. There was no hairdryer to dry your hair. You wanted to make a hot drink but you had no access to a kettle … How is your day going? How do you feel? Welcome to the lives of many people with dementia living in care homes.”
This is the opening of a new training programme for care home staff developed by Dr Kellyn Lee, chartered psychologist and research fellow in ageing and dementia at the University of Southampton. Called material citizenship, it aims to get staff thinking about the importance of mundane, functional objects to our lives and identities, and how giving their residents agency over these things can significantly improve their wellbeing.
To watch a short video on material citizenship: https://www.youtube.com/watch?v=1JAP_iYtHtQ&t=35s
For more information contact Dr Kellyn Lee Kellyn.email@example.com
This informative insight into the little-known disease that killed Robin Williams is affecting but bleak
The genius of Robin Williams is taken as a given by this intensely sad documentary, which pays fleeting tribute to the actor and comedian’s talent but focuses mainly on the undiagnosed neurodegenerative disease that led him to take his own life in 2014.
Lewy body dementia is a deadly and devastating condition, one that is little known and frequently misdiagnosed. And for someone like Williams, whose brilliance depended on the quickfire, sparking neural connections of his exceptional brain, the symptoms, which include fear, delusions and hallucinations, must have been particularly terrifying.
Kristof Bilsen’s stunning doc assesses the disease’s toll on patients and carers trapped in the international care-market
Shakespeare’s line about “second childishness and mere oblivion” – the last of the seven ages of man bleakly proclaimed by Jacques in As You Like It – might come back to you watching this. This very moving and profound documentary, from director Kristof Bilsen and executive producer Kirsten Johnson (Dick Johnson Is Dead), is about dementia, dementia care, the globalised market in compassion and what society deems to be woman’s work.
My colleague Charlie Phillips enthused about this film in 2019 and I can only agree. It is a deeply affecting portrait of what it means to be a professional caregiver; and what it means for both patient and nurse to be separated from their families by fate, biology and market forces.
Mother is released on digital formats on 11 January.
- England manager supports more research into dementia risk
- ‘Everybody is more aware than ever of the impact of the illness’
Gareth Southgate believes football remains “in the dark” about the long-term risks of heading the ball and concussions sustained on the pitch.
Many former players have dementia or have died from the disease and the England manager, a former centre-half, has led calls for increased research regarding the game’s risks.
Charity calls for people to use alternative, less polluting heating and cooking options if they can
Campaigners and health experts are calling on people who have alternative heating not to use their wood burning stoves this winter amid growing concern about their impact on public health.
The Guardian recently reported that wood burners triple the level of harmful particulates inside the home as well as creating dangerous levels of pollution in the surrounding neighbourhood.
Susan Schneider Williams watched her husband suffer with undiagnosed Lewy body dementia before he killed himself in 2014. A new film tries to educate others about the condition – and put to rest assumptions about his death
After Robin Williams died in August 2014, aged 63, a lot of people had a lot of things to say about him. There was the predictable speculation about why a hugely beloved and seemingly healthy Hollywood star would end his own life, with some confidently stating that he was depressed or had succumbed to old addictions.
Others talked, with more evidence, about Williams as a comic genius (Mork & Mindy, Mrs Doubtfire, The Birdcage, Aladdin); a brilliant dramatic actor (Dead Poets Society, Awakenings, Good Will Hunting, One Hour Photo); and both (Good Morning, Vietnam; The Fisher King). One thing everyone agreed on was that he had an extraordinary mind. Comedians spoke about how no one thought faster on stage than Williams; those who made movies with him said he never did the same take twice, always ad-libbing and getting funnier each time.
This warm documentary about Robin Williams reveals how much he was loved by those who knew him
When Robin Williams died in 2014 at the age of 63, the tabloids filled in the blanks. The front pages speculated on the return of his well-documented demons: Williams had a history of depression, alcohol addiction and cocaine use. Then came the postmortem, revealing that actually he’d been suffering from an undiagnosed degenerative brain disease, Lewy body dementia. Which explained his symptoms in last 18 or so months of life: Parkinson’s-like tremors, visual hallucinations, paranoid delusions and sleep disturbance. As a neurologist puts it, he must have been terrified.
In this sensitive, desperately sad documentary, Williams’s widow, Susan Schneider, along with friends and colleagues, describes his decline. For a while, things just hadn’t seemed right. There’s footage from the set of his final movie, Night at the Museum: Secret of the Tomb; he looks blank and distracted – the alertness and anarchic wit gone. “He was just sort of off,” says a friend. He couldn’t remember his lines. He hadn’t slept for months. There were times he followed Susan around the house.
- Lawyer Richard Cramer says: ‘There is no clearcut favourite’
- Significant payouts ‘could be final straw’ financially for the sport
A sports lawyer has warned of the “significant hurdles” a group of former rugby league players will need to overcome to mount a successful legal challenge against the sport’s authorities over a failure to protect them against neurodegenerative disease. He also said the game may struggle to survive if the challenge succeeds.
Up to 10 retired players are understood to have approached Rylands Law, the firm that has launched action on behalf of a number of former rugby union players diagnosed with brain injuries, including the former World Cup winner, Steve Thompson.
Some of the league players in question, who it is understood have been retired for a number of years, are believed to be showing symptoms of dementia.
An unmissable comedy challenge, a gentle spotlight on people with dementia, and Nadiya warms up America
What a boon has been the latest series of Taskmaster in keeping some of us sane these past few weary weeks. A glorious kind of alchemy pervaded from the very first episode in 2015: five highly personable individuals, of undoubted “celeb” status but staunchly non-sleb in outlook, a pair of sweetly bickering hosts (Greg Davies and Alex Horne) and a phantasmagoria of truly outre tasks, the stuff of cheese-dreams – how this recipe somehow magicked itself into unmissable telly still has the more by-numbers tickbox “creatives” of the industry scratching heads.
The ever-caustic Greg Davies’s judging comments have reduced even himself on occasion to helpless fits
The Line of Duty star revisits some of those who took part in her Dementia Choir concert and finds the pandemic has taken an emotional toll
Betty, who is 84, thought her devoted granddaughter Kellie was keeping her prisoner. That is what Alzheimer’s under lockdown conditions does to you. She is having a better day when Vicky McClure comes to visit and reminds her of the happy time they spent together two years ago, forming a choir of people living with similar conditions and putting on a show at the Royal Concert Hall in Nottingham. “Best thing I’ve ever done,” says Betty, that memory still lodged firmly in her increasingly porous mind. “And we all enjoyed each other.”
The Nottingham show was the climax of 2019’s Our Dementia Choir with Vicky McClure. This half-hour special, Vicky McClure: Our Dementia Choir at Christmas (BBC One), revisits some of those who took part to see how they have fared since. When it was filmed, there had already been six months of life under pandemic conditions and, by and large, the answer is: not as well as they might otherwise have done. Mask-wearing makes it even more difficult for them to identify people; the lack of routine and structure confuses and disturbs; and if, like Betty, you do not and cannot retain the reasons for the curtailment of your freedom, it feels like forcible incarceration.
Max Rushden, Barry Glendenning, Chris Sutton, John Stiles and Dr Willie Stewart discuss the prevalence of dementia in former footballers, sharing first-hand experience of the disease, the science behind the correlation between football and dementia and what needs to be done in the future
For this Football Weekly special Max Rushden and Barry Glendenning are joined by former Norwich, Blackburn and Celtic striker Chris Sutton, John Stiles – son of World Cup winner Nobby Stiles – and Dr Willie Stewart, consultant neuropathologist at the Queen Elizabeth University Hospital, Glasgow.
In 2003 Steve Thompson helped England win the World Cup, playing a part in one of the most memorable endings to a match. Now aged 43, he finds he has no memory of the match at all – and has been diagnosed with early onset dementia. Andy Bull describes how a group of former stars are launching a legal case against the sport’s governing bodies
The 2003 World Cup final between England and Australia had gone into the last minute of extra time, with scores tied. Steve Thompson, the England hooker, threw the ball in from a line out and, as England advanced, the ball ended with Jonny Wilkinson, whose drop goal dramatically won the match for England. It’s one of the most memorable moments in recent rugby history, but Thompson, now retired aged 42, doesn’t remember it.
The Guardian’s Andy Bull tells Rachel Humphreys about his investigation into rugby and dementia, during which he spoke to Thompson, one of several former players launching legal action against rugby union’s governing bodies. They claim that past failures to properly manage the safety of players who regularly received blows to the head has left some of them with debilitating conditions such as dementia and chronic traumatic encephalopathy.
As former rugby players take legal action, experts warn that authorities in many sports must do more to prevent head injuries
In the 1980s and 1990s, Crispin Cormack, a full-back who could also play fly-half, turned out for Pontypridd, Cardiff Quins and London Welsh, and toured Australia with Wales.
These days he is a lawyer specialising in personal injury claims. Last week, in the wake of the revelation that a group of former professional players were taking legal action against the game’s authorities for their alleged failure to protect them from risks that caused concussions, his phone started ringing.
In the modern era in rugby there has been an explosion in the frequency of head impacts
Neuropathologist Willie Stewart says there is clear evidence between the sports and degenerative brain condition CTE
A leading expert on concussion and sport has warned that professional football and rugby will face huge litigation claims in the future if the games’ authorities do not take urgent action to combat brain injuries.
Dr Willie Stewart, consultant neuropathologist at the Queen Elizabeth University hospital, Glasgow, led the Field study research, which revealed last year that footballers were three-and-a-half times more likely to die of neurodegenerative disease than age-matched members of the general population.
Coronavirus restrictions are there to protect us, but we must look to our hearts before enacting every single one of them
Several years ago, a charity shop worker in Hampshire had an epileptic seizure and fell into a shallow lake. Firefighters called to rescue him said they could not enter water higher than ankle deep because of health and safety rules. The man lay face down, drowning, while the firefighters measured the depth of the water with a pole.
He died, and everyone was aghast because it was so blindingly obvious that a set of generic regulations had blotted out all basic human instincts of rescue, of kindness, of common sense. When should rules be obeyed, and when should they be bent and broken? When should they be like solid, unbreachable walls, and when more like membranes, porous and yielding to the pressure of specific circumstances? When should we jump into that water?
Would I, in clear breach of regulations, enter the home of someone in despair if they needed me? I would
All the time that I have been investigating former players in middle age facing up to life-changing diagnoses, I have been watching the effects of early-onset Alzheimer’s on my wife
It has been a horrible week for rugby, a fitting end to a year more harrowing and transformational for the sport than quite possibly any – 1995 and 1895 can make way now for 2020. From the salary-cap debacle at the start, through the ravages of a global virus, the more familiar ravages of an audience endlessly critical of the product, to this, an association with dementia in former players barely at middle age – what chance our grand old game surviving?
From a personal point of view, it has been an unsettling few months, this story first appearing in my inbox in July, while sitting on a beach in Devon. The implications were obviously dire for the sport, the cultural milieu, within which I’ve lived most of my life.
I remember the chill, circa 2012, of witnessing her first glaring lapse of memory, over dinner in the cafe
- Bill Sweeney says removing risk is ‘journey with no conclusion’
- Chief executive says any payouts would be covered by insurance
English rugby union’s top official says the sport is safe to play and that the future of the Rugby Football Union is not at risk from possible multi-million compensation claims made by brain damaged former players. Bill Sweeney, the RFU’s chief executive, does say, however, that the union are wary of the potential impact on the game’s image and that making rugby entirely risk-free is “a journey with no conclusion”.
Like everyone else the RFU has been “very sad and distressed” to learn that the 2003 World Cup-winning hooker Steve Thompson is among a number of players showing signs of early onset dementia in their early 40s. As yet, however, Twickenham is still awaiting precise details of the proposed legal proceedings and Sweeney believes his organisation would be insured in the event of any huge future payout.
- Former rugby players taking legal action over head injuries
- Team behind new app have approached RFU and FA to offer help
People with a history of concussion are more than twice as likely to develop a neurological disease, according to a new study that gathered the largest ever dataset on the syndrome in the UK.
The study, from the team behind a new dementia screening app, Mindset4Dementia, has released its findings showing a significant correlation between concussion and brain disease after the Guardian revealed this week that a group of former professional rugby players are taking legal action against the sport’s governing bodies for negligence in their failure to protect them from long-term brain injuries caused by head trauma during their careers.
Celebrity lauded for raising awareness and funds after her dementia diagnosis in 2014
Dame Barbara Windsor’s decision to speak publicly about her Alzheimer’s disease had an “absolutely huge” impact on awareness of the condition in Britain and encouraged many thousands of people to seek help for the condition, campaigners have said, following the announcement of the beloved actor’s death on Thursday.
As tributes flooded in for the Carry On and EastEnders star, who died in a London care home at the age of 83, the head of the Alzheimer’s Society said Windsor’s campaigning work following her diagnosis with dementia in 2014 had left an “incredible legacy”.
Seven noncommunicable diseases caused nearly half of deaths last year, with unhealthy lifestyles and environments partly to blame
Noncommunicable diseases such as cancer and diabetes are now the leading causes of death in the world, in a dramatic change from two decades ago.
They now make up seven of the top 10 causes of death, an increase from four out of 10 in 2000, with heart disease the biggest killer – accounting for 16% of all deaths.