‘Dementia’s one-size-fits-all support fails south Asians’
Could a technology prize hold the key to culturally inclusive care?
By DR KARAN JUTLLAFeb 10, 2023
EVERY three minutes someone in the UK is diagnosed with dementia – around 210,000 a year – and 25,000 people with dementia are from ethnic minorities.
Dementia is on the rise everywhere, but it’s going to hit ethnic minorities the hardest – with an expected 700 per cent increase in people from south Asian communities being diagnosed by 2050, compared to 100 per cent in the general population.
People from the south Asian community face the same challenges as everyone else, from navigating a broken social care system to working out what benefits and support they are entitled to.
It’s hard to get good support after a diagnosis – Alzheimer’s Society research showed that three in five people didn’t get enough support in the past year, and one in five carers ended up taking their loved one with dementia to A&E to get the help they needed. But people from ethnic minorities face unique challenges in accessing that support, and when they do get it, it isn’t tailored to their needs.
My report on post-diagnostic support for the south Asian community in England last year showed Asians living with or affected by dementia are failed by a lack of culturally inclusive support after a diagnosis. Families are struggling to navigate a system which is outdated and designed for the white British population.
Imagine trying to wrap your head around a life-changing diagnosis of dementia, then being confronted by a complex and often frustrating social care system, in a language which is not your mother tongue. Being handed leaflets in English and offered support from a healthcare worker who doesn’t speak your language or understand your culture leaves many struggling to cope alone, with the burden of care landing with the family.
I’ve heard of care agencies getting confused between different south Asian languages, leaving families frozen out – for example, sending a Punjabi family a Gujarati-speaking care worker. Although there are some similarities with Hindi, Urdu and Punjabi, Gujarati and Bengali are very different languages.
The social care system in this country is broken and we can’t alleviate its inequalities and challenges overnight.
While we continue to work towards truly inclusive care, there is a space for innovation, which can bridge the gap to offer culturally sensitive and inclusive support. The Longitude Prize on Dementia – funded by Alzheimer’s Society and Innovate UK and delivered by Challenge Works – is a new initiative offering £4.34 million in seed funding, development grants and prize money to drive the creation of technology to help people with dementia live independently in their own homes.
This is an opportunity to create tools, apps and solutions which address the unique challenges faced by people with dementia from ethnic minority communities. It’s time to put cultural needs front and centre when developing dementia support.
For example, as someone’s dementia progresses, they might start to speak in a language which even their family can’t understand, if they have grown up in multiple communities. Maybe an app could help to understand which words they use in different languages and translate for their family or healthcare professionals, or even suggest words based on which language they have used for similar words.
Dr Karan Jutlla
Technology could be used to capture a person’s life history and create talking points for reminisce or music therapy, supporting them to live well with their condition.
Healthcare workers also need support to help them engage with people, and this prize could rise to the challenge.
Sadly, many types of technology suffer from ingrained bias right from the start. The Longitude Prize is a chance for innovators to develop new technologies which are appropriate and applicable for everyone, whatever their background. We can only do this by incentivising diverse innovators across a wide range of backgrounds, disciplines and skill sets to channel their efforts on dementia.
So, any new products developed through the prize must consider the cultural implications. The AI behind text prediction could anticipate what someone might be trying to say when they struggle to find the right word, but this can only work if these technologies are able to recognise a range of different languages.
My report called for dedicated link workers who speak a person’s first language to support them after a diagnosis. We still have a long way to go until everyone has access to support like this, and technology isn’t going to be the sole answer. But this prize may be the first step to creating a new market of assistive technologies for an ageing population, either built directly for people from ethnic minority communities or designed with cultural inclusivity in mind.
A PUBLIC inquiry begins on Tuesday into the murders of three young girls at a Taylor Swift-themed dance event in Southport last year.
The inquiry will examine whether the attack could have been prevented and how future incidents might be avoided.
The attack took place during a summer holiday event in northern England in July, when teenager Axel Rudakubana, who had a history of violence and an interest in genocide, carried out a knife attack. Three girls were killed and 10 others injured.
The incident led to widespread shock and was followed by several days of rioting across the country.
Rudakubana, who was 17 at the time, was sentenced in January to a minimum of 52 years in prison. He pleaded guilty just before his trial was due to begin. Prosecutors said there was no clear motive, describing the attack as driven by a desire to commit mass murder.
Following his conviction, prime minister Keir Starmer ordered an inquiry after it emerged during the trial that Rudakubana had been referred to a counter-radicalisation programme three times, but no further action had been taken.
He had also been previously arrested while carrying a knife and had admitted to possessing an al Qaeda training manual as well as making the poison ricin.
Adrian Fulford, who is leading the inquiry, said in a statement: "My focus throughout this inquiry will be a thorough and forensic investigation of all the circumstances surrounding the attack and the events leading up to it."
The first part of the inquiry will examine Rudakubana’s background and his contact with public bodies. A second phase will explore the wider issue of children becoming involved in violence, which has become an increasing concern for UK authorities.
Lawyers representing the families of the three girls – Bebe King, six, Elsie Dot Stancombe, seven, and Alice Dasilva Aguiar, nine – said they hoped the inquiry would help bring out the facts.
"We know that nothing the inquiry reveals, or subsequently recommends will change the unimaginable loss felt by the families of Elsie, Alice and Bebe, but we all now have a responsibility to ensure that something like this never happens again," they said in a statement.
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Starmer is facing a Labour backbench revolt over plans to reform special needs support in schools without guaranteeing existing legal rights. (Photo: Getty Images)
KEIR STARMER is facing a backlash from Labour MPs over plans to reform special educational needs and disabilities (SEND) support, after ministers stopped short of guaranteeing legal rights for parents.
Education Secretary Bridget Phillipson said the government was committed to reforming the current system, which costs £12 billion a year. However, she did not confirm if legally enforceable rights, such as those provided by education, health and care plans (EHCPs), would remain.
Early education minister Stephen Morgan told Times Radio: “We want to make sure that every child gets the support that they need,” but did not rule out changes to current entitlements.
Senior Labour MPs told The Times the plans risk repeating mistakes from past welfare reforms. “We’re all in favour of reforming the system but that cannot be driven by saving money and taking support away from children,” one MP said.
The government’s proposals, expected in the autumn, focus on early intervention and better support in mainstream schools. Ministers say the aim is not to cut costs but to improve outcomes. They have pledged £750 million for new specialist facilities and over £1 billion for high needs budgets.
Campaigners say EHCPs remain essential for securing support. Celebrities and groups including the National Autistic Society warned in The Guardian: “Without statutory support, underpinned by necessary extra resources for schools, it’s extremely unlikely that ministers will achieve their aim.”
Phillipson told the BBC the current system was “too adversarial” and “too bureaucratic,” adding: “We need to just take a step back and think about how do we build a better system.”
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Londoners faced a wet and stormy start to the week
Heavy rain and thunderstorms drench London at the start of the week
Temperatures set to rise with highs of 31°C expected by Thursday
Heatwave could be declared by Friday if warm conditions persist
Night-time temperatures to remain high, increasing discomfort
UV and pollen levels forecast to be very high across the south
Thunderstorms soak London before summer heat returns
Londoners faced a wet and stormy start to the week as heavy rain and overnight thunderstorms swept through the capital. Monday morning saw widespread downpours, leaving commuters reaching for umbrellas and Wimbledon ticket hopefuls queuing in ponchos.
The unsettled conditions followed a burst of thunderstorms on Sunday afternoon and continued into the early hours of Monday, prompting caution across the city. The Met Office has not issued a formal weather warning for thunderstorms, but conditions remain unstable.
Temperatures expected to climb through the week
According to the Met Office, Monday will gradually clear, with sunny intervals forecast later in the day. Temperatures are expected to peak at around 23°C, before rising steadily through the week.
By Wednesday, temperatures could reach between 25°C and 28°C in parts of the country. However, for a heatwave to be officially declared, these thresholds must be met for three consecutive days.
Senior Met Office meteorologist Marco Petagna explained: “Although the temperature will be reaching the criteria, we probably won’t actually reach an official heatwave until around Friday.”
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Heatwave likely by Friday, with weekend highs in low 30s
The mercury is forecast to hit 30°C or above by Friday and Saturday, with some areas potentially reaching the low 30s. Conditions are also expected to become more humid towards the weekend, making nights increasingly uncomfortable as temperatures are not likely to fall below 15°C.
Petagna noted that while it will be hot, the UK is expected to avoid the extreme heat experienced in southern Europe, where parts of Spain and Portugal have seen temperatures soar into the mid-40s.
UV and pollen levels also rising
In addition to the heat, very high UV and pollen levels are expected across southern parts of the UK later in the week. The Met Office has advised the public to take precautions during peak hours of sunlight.
The long-term outlook remains uncertain, with some forecasts suggesting the heat may ease early next week, while others predict it could persist into the following weekend.
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Lisa Nandy, Steve Reed, René Olivieri and Hilary McGrady at a National Trust event marking its 130th anniversary
THE National Trust, which is seeking to broaden its appeal to British Asians, is marking its 130th anniversary with a renewed commitment to restoring nature and widening access under a 10-year strategy.
Its director-general, Hilary McGrady, also aims to inspire more people to get involved in caring for the country’s natural resources.
The National Trust was founded in 1895 by three Victorian philanthropists – Octavia Hill, Sir Robert Hunter and Canon Hardwicke Rawnsley – to “promote the permanent preservation for the benefit of the nation of lands and tenements (including buildings) of beauty or historic interest”. With more than “5.38 million members, 11,000 staff and 61,000 volunteers, it is now Europe’s largest conservation charity, caring for over 250,000 hectares of farmland, 890 miles of coastline and 500 historic properties, gardens and nature reserves, for everyone, for ever”.
It wants more British Asians to apply for jobs with the Trust or offer to become volunteers. Many of its historic properties have Indian connections.
McGrady, who has been with the Trust for 20 years, set out the organisation’s aims: “For 130 years, the National Trust has responded to the crises and challenges of the time. Today, nature is declining before our eyes and climate change is threatening homes and habitats on a colossal scale. Meanwhile, millions of people can’t enjoy the benefits that green space and heritage bring.
“So, we will ramp up our work to restore nature, both on our own land and beyond our boundaries. We’ll work to end inequality of access to green space and cultural heritage. And we will inspire millions more people to take action to protect the things we all need to thrive.
“Our charity’s founders were passionate campaigners who recognised the threats to our natural and cultural heritage, and, against the odds, did something about it. That same boldness is needed today. The Trust is uniquely placed to do something about these challenges and it’s why we are setting ourselves these ambitious but much-needed goals.”
At a recent reception to mark the Trust’s 130th birthday in College Gardens, Westminster, the director general asked guests to close their eyes and imagine their favourite idyllic locations.
“You need to know the National Trust is here to look after it, to support it, to stand up for it, to stand up for the right for everyone to have the kind of access to the beauty and the nature that you’ve been thinking about,” McGrady said.
She was “incredibly proud” of what the Trust had achieved “from the very days where there was just a glint in Octavia’s eyes. But I also want you to think about the legacy – not just what we’ve achieved so far, but the legacy we want to leave for our future, for your children, your children’s children, and far beyond,” she added.
She pointed out: “Our historic fabric in our towns and our cities is under massive threat, because we’ve no money to be able to upkeep them. Local authorities are under real pressure. People living in cities – 40 per cent of them – have no access to green or blue space, and so that connectedness that is so vital for the care of nature is being broken.
“And, of course, climate change is affecting everybody’s life – and anyone who doesn’t think it, please just look at the flooding, look at the heat damage, look at our landscapes. These are new challenges, and the Trust is going to step up and face them again.
” She declared: “We’re going to restore nature. We’re not just going to stop the decline. We’re going to restore it.”
McGrady said: “We’re going to move more and more into cities.” “We’ve just done that at Castlefield,” she added, referring to the transformation of a Victorianera steel viaduct transformed into a green “sky garden” in the heart of Manchester.
She also spoke about a landscape project in Belfast: “We’ve just acquired an amazing bit of divis on the edge of Belfast that will make a massive difference to the north of the city.”
She paid tribute to the people who had built the organisation over 130 years: “I stand on the shoulders of many, many of those giants, and they’re the people who built an institution that is much loved, that is much respected and is really trusted, which in this day and age, is a rare and a precious thing I will fight to protect to the death.
” She concluded: “I hope that Octavia – if she’s looking down on us now – will be pleased to see the spirit of the National Trust remains and that we remain for everyone, forever.”
McGrady was followed by Steve Reed, secretary of state for the environment, food and rural affairs, who waved his National Trust membership card: “We all have a special place we love to visit. For me, it’s Sissinghurst Castle in Kent. I love the beautiful gardens designed by the writer and poet Vita Sackville-West and her husband Harold Nicolson, which remain popular today.”
He expressed the Labour government’s support for the Trust: “I look forward to working with the National Trust to develop this work and open up more of our beautiful countryside for everyone to enjoy.”
He said: “Nature underpins everything: our economy, our communities and our livelihoods. But we have become one of the most nature-depleted countries in the world. Restoring nature is a key pillar of the government’s plan for change.
“I’ve just arrived back this afternoon from the UN Oceans Conference in Nice. I was proud to announce a consultation on banning bottom-trawling in our marine protected areas. We can’t go on wiping out precious marine habitats, just because they’re out of sight beneath the sea.
“And yesterday, my colleague Matthew Pennycook announced that the government will update national planning policy to ensure swift bricks are incorporated into new buildings. They make a massive impact on expanding bird populations. We will make sure that now happens in new developments right across the country.
“We will create nine new national river walks, plant three new national forests and support communities to create new parks and green spaces in their neighbourhoods. We’ve already announced the first new national forest between the Cotswolds and the Mendips which will see 20 million trees planted in the coming years.
“It’s a national scandal that our rivers, lakes and seas are choked by record levels of pollution. We’re cleaning them up with new laws to ban bonuses for water bosses who oversee catastrophic pollution incidents, and bringing in over £100 billion of private funding to fix the broken pipes that are the primary cause of sewage leaks.”
The culture secretary, Lisa Nandy, also spoke in support of the Trust, in contrast to some of her predecessors under the Tories who had criticised a report revealing that nearly a hundred of its historic properties were built with money made in India or through the slave trade.
Nandy said she had visited Trust properties with her parents and now, with her 10-year-old son, had been to “hundreds of National Trust properties all over the country”. “What we’ve seen is an organisation that is truly national in the sense that you are rooted locally, standing with communities not just to protect and preserve, but to promote and celebrate the pride, heritage and contribution of those places and their people to our country.”
The volunteers were warmly thanked by the Trust’s chairman, René Olivieri.
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The King said the public should draw on the 'extraordinary courage and compassion' shown in response to the attacks. (Photo credit: X/@RoyalFamily)
PRIME MINISTER Keir Starmer and King Charles on Monday paid tribute to the unity shown in the aftermath of the 7 July bombings in London, as the country marked 20 years since the attacks.
On 7 July 2005, four Islamist extremists carried out suicide bombings at Aldgate Station, Edgware Road, King's Cross and Tavistock Square. The attacks killed 52 people and injured hundreds more.
Events are being held across London to commemorate the anniversary. Members of the royal family are expected to join survivors and families of the victims.
The King said the public should draw on the "extraordinary courage and compassion" shown in response to the attacks.
"We remember with profound sadness the 52 innocent people who were killed in senseless acts of evil -- and the enduring grief of their loved ones," he said in a statement published by the Press Association.
"In doing so, we should also remember the countless stories of extraordinary courage and compassion that emerged from the darkness of that day.
"The selfless bravery of our emergency services, transport workers, and fellow citizens who rushed towards danger to help strangers reminds us of the very best of humanity in the face of the very worst."
‘We stood together then, and we stand together now’
Starmer said, "Those who tried to divide us failed."
"We stood together then, and we stand together now -- against hate and for the values that define us of freedom, democracy and the rule of law."
He added, "We honour the courage shown that day -- the bravery of the emergency services, the strength of survivors, and the unity of Londoners in the face of terror."
The Duke and Duchess of Edinburgh will attend a National Service of Commemoration at St Paul’s Cathedral. A separate service will also take place at the memorial in Hyde Park for survivors and families of the victims.
Call for unity and vigilance
Charles said, "While the horrors will never be forgotten", the country "may take comfort from the way such events rally communities together".
"It is this spirit of unity that has helped London, and our nation, to heal," he said.
"Let us therefore use this 20th anniversary to reaffirm our commitment to building a society where people of all faiths and backgrounds can live together with mutual respect and understanding."
Home secretary Yvette Cooper, speaking ahead of the anniversary, said Islamist and right-wing extremism remained the most significant threats to the UK.