An exploration of the UK carer world

The Times - dementia coverage - 2 Feb 2014 and back

A search on that date gives 30 Jan as the most recent.  The entries are posted in the order presented on the source page.The Times - dementia coverage - 2 Feb 2014 and back  here

Alzheimer’s and other forms of dementia affect every aspect of life for sufferers and carers — the eventual loss of self is devastating for all concerned

Sir, As the full-time carer for my partner who was diagnosed several years ago with early-onset Alzheimer’s disease I welcome your coverage of the crisis regarding dementia and the G8 conference (“Cameron to double cash for dementia”, Dec 11). However, there is also frustration as this crisis has been looming for years and funding for research is still way behind that for cancer, many forms of which can now be effectively treated or cured.

Alzheimer’s and other forms of dementia affect every aspect of life for sufferers and carers — the eventual loss of self is devastating for all concerned. Raising awareness of this is essential, but adequate funding must be in place to back this up and to support the excellent work done by the charities involved. The effect on families, particularly where early onset is diagnosed, in terms of work, finance and retirement plans, is often underestimated. Early diagnosis is improving and really helps but knowing that there is no cure or new effective treatments as yet can be hard to live with.

Jacki Shorley

Kibworth, Leics

Sir, While the G8 summit puts dementia care in the news for all the right reasons, there is still an overwhelming tendency for the media to seek out the deeply disturbing poor-care stories in the UK. As Sir Terry Pratchett put it, on Newsnight this week, “Every time I read a newspaper or look at a screen, some bad care has been found somewhere in Britain.”

At a time when dementia care is being given the attention it desperately needs, it would be remiss of those of us campaigning for higher standards not to make the point that the vast majority of the UK’s more than 21,000 care homes are staffed by compassionate, caring individuals who work incredibly hard in very demanding circumstances. There is bad practice in all industries and all sectors but we cannot allow the bad news to define dementia care as it currently does. It is painfully demoralising for a sector that needs our support much more than our scorn.

As more medical breakthroughs are made and greater financial commitment is provided, it will be the UK’s committed and dedicated care homes and dementia care workers who will drive up standards and it is they who should take centre stage in the news coverage.

Leon Smith

Nightingale Care Home

London SW12

Sir, It is not widely known that dementia is also a cruel illness for young people. Research by the Alzheimer’s Society in 2011 estimated that some 600 people are affected with young-onset dementia in Oxfordshire, and around 157 of them require specialist home care. At the moment, as elsewhere, they are likely to be in care homes which mainly care for people in their eighties and nineties. Younger people are likely to be physically active and require different forms of stimulation and activity. We fervently hope to begin breaking down the stigma associated with what many still regard as an illness of older people.

Geoffrey Shepherd

Young Dementia UK Homes, Oxon

Sir, I lead the King’s College London research group that generated the estimates of the current and future numbers of people with dementia worldwide (36 million now, nearly doubling every 20 years) and societal cost ($604 billion, or 1 per cent of global GDP) cited in the G8 Dementia Summit declaration.

The declaration commits to seeking “a cure or a disease modifying therapy” by 2025.

Twelve years is both a cruelly long time to wait, and a very short time in which to achieve this ambition. The outcome is uncertain. The UK’s planned uplift in research spending (£66m) represents less than half a per cent of the annual societal cost of dementia in the UK. In the meantime we estimate that 28 million of the world’s 36 million people with dementia go without a diagnosis, let alone access to structured care and support.

If a disease-modifying therapy is identified, we will lack a culture of help-seeking, and an effective health and social care system for diagnosing and delivering treatment as part of a holistic package of care. These limitations will be all the more apparent in low and middle-income countries where nearly two thirds of the world’s older people with dementia live.

Equity and justice are critical issues here. If the WHO is to identify dementia as “an increasing threat to global health”, does that mean that a Trade Related Aspects of Intellectual Property Rights (TRIPS) exemption would be invoked for least developed countries, as was the case with antiretroviral treatment for HIV?

Would the treatment be affordable in middle-income countries such as India and China, many of whose older people may participate in “global trials” to provide evidence of therapeutic efficacy and safety to US and European regulatory authorities?

Living well with dementia is possible, and all the more likely with support, education, recognition and adequate remuneration for carers, and integrated, person-centred health and social care.

I suspect that this will be as true in 2025 as it is now. Two and a half cheers then for David Cameron, Jeremy Hunt, and the G8 leaders for their magnificent initiative. I hope, fervently for a cure. However, let no one be in any doubt that the critical issue here is investment in care, and it is on this issue that we should hold governments to account.

Professor Martin Prince


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December 10 2013

David Cameron has been urged to “declare war” on dementia to end the “shocking” research gap between the condition and cancer.

As the Prime Minister prepares to host health ministers from the world’s richest countries at tomorrow’s G8 dementia conference in London, campaigners are calling for a global action plan to address what is becoming a “21st-century plague”.

Britain spends about four times as much on cancer research as dementia and six times as many scientists work on cancer. Charities say that the meeting should be a “defining moment” that must vastly increase research into the condition and attract the best scientists to study it.

Research into dementia lags decades behind cancer, and the Alzheimer’s Society says that Mr Cameron should take inspiration from the declaration in 1971 by Richard Nixon, who was then the US President, of a “war on cancer”. A huge increase in funding and political focus on cancer helped to spur huge progress in treatments, with many types now curable.

Jeremy Hughes, chief executive of the charity, said: “Dementia is fast becoming the biggest health and social care challenge of this generation. We must tackle dementia now, for those currently living with the condition across the world and for those millions who will develop dementia in the future.

“Lack of funding means dementia research is falling behind other conditions. The G8 is our once-in-a-generation chance to conquer this condition and we must see meaningful action after the talking is over.”

He added: “The G8 summit could be the defining moment for dementia that people look back on many years in the future, as many do now for Nixon’s declaration on cancer. It is shocking how dementia research is decades behind cancer. There are six times more UK researchers working on cancer than dementia. Now is the time for action and for governments worldwide to step up and commit to a collaborative plan.”

Hilary Evans, of Alzheimer’s Research UK, said: “The G8 dementia research summit is a unique opportunity for representatives from some of the most powerful countries to come together to discuss ways to tackle dementia through research. The economic impact of dementia, which costs the UK economy alone more than £23 billion a year, is staggering and shows the desperate need for progress to be made.

“We want the G8 dementia summit to deliver a clear, co-ordinated and long-term action plan that breaks down barriers to progress and prioritises dementia research on a global scale.”

Mr Cameron will host the first G8 meeting devoted to a particular disease. Already 44 million people worldwide live with dementia, a figure that is expected to triple over the next four decades. The world has “stuck our head in the sand” for too long, according to Mr Cameron.

The Prime Minister has promised to double Britain’s spending on dementia research to £66 million by 2015. That is dwarfed by the Government’s £266.million annual spend on cancer. About 4,000 scientists work in dementia research, compared with up to 28,000 on cancer, the Alzheimer’s Society calculates. That has contributed to much slower progress in dementia, it argues.

The first drug to treat the condition was introduced in 1996, whereas chemotherapy was introduced in 1958.

The underlying causes of dementia are also poorly understood. Atticus Hainsworth, a neuroscientist at St George’s, University of London, said: “Dementia is clearly going to be the 21st-century plague. We lack therapies because we don’t know enough about the biology of the ageing brain.”   


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A devoted daughter snapped and beat up her 83-year-old mother, which led to her death, when she was unable to cope with the elderly woman’s severe dementia.

Ann Lupton, 54, had sent a text message to her husband while visiting her mother, “Mum is a nightmare!! Lol”, and later told him how Marie Hothersall had “been stubborn and hard work”, Liverpool Crown Court was told.

The next morning the elderly woman was found by a support worker badly injured on the floor of her home in Cottam, near Preston, Lancashire. The injuries were consistent with ‘‘forceful slapping, punching, kicking or stamping”.

Mrs Hothersall died from pneumonia two months later as a direct result of the injuries, the court heard.

Lupton, from Stoke-on-Trent, Staffordshire, admitted manslaughter but was jailed for just 16 months after her family said that they had forgiven her and that Mrs Hothersall’s death had been “a blessing”.

A BBC newsreader has called for families of dementia sufferers to receive more support, describing driving home in “floods of tears” after visiting her mother. Writing in Radio Times, Sally Magnusson, 58, daughter of the former Mastermind presenter Magnus, criticised the lack of guidance on how family members should care for relatives. Her mother, Mamie Bird, died in 2012.


Sir, Like Sally Magnusson (“Dementia led daughter to kill”, Jan 28), I have often cried myself home after visiting a parent with advanced dementia. So have thousands of others. Realising over and over again that the person you love has disappeared, while a shell lives on, brings repeated shock, and grief.

Your article may have left readers with the impression of a lack of guidance for family members. In fact several charities provide support. Admiral Nurses, provided through Dementia UK, are a lifeline for family carers. The Alzheimer’s Society (dealing with all forms of dementia) has a helpline, and fantastic fact sheets covering a wide range of topics including communication, food, medication and other sources of advice and respite for families of dementia patients.

Susie Symes


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David Cameron has promised to double spending on dementia research over the next decade, as officials last night tried to hammer out a global deal to treat the condition as seriously as cancer or HIV.

A string of research initiatives are announced today as health ministers from the world’s richest countries gather in London for a G8 summit on dementia.

At the same time, NHS inspectors said they were starting a programme of 150 inspections of hospitals and care homes to check how people with dementia are treated.

The Prime Minister has pledged to spend £66 million a year on dementia research by 2015, but he now wants to increase that to £130 million by 2025, and is trying to convince other rich countries to pledge similar funding.

“If we are to beat dementia, we must work globally, with nations, business and scientists from all over the world,” Mr Cameron said.

The Innovative Medicines Initiative, a partnership between drug companies and the EU, will spend £44 million supporting trials into possible new dementia treatments.

Michel Goldman, executive director of the initiative, said: “The challenge of developing new treatments for Alzheimer’s is too great for any single organisation, country or company to tackle alone. What is needed is an international, collaborative approach.”

The Medical Research Council will spend £50 million researching how dementia affects the brain.

Hilary Evans, of Alzheimer’s Research UK, said: “It will be heartening to thousands of people living with dementia to see the UK leading the way in dementia research and to know that scientists are fighting for them.”

The Care Quality Commission will look at how services in England care for sufferers. David Behan, chief executive of the commission, said: “There is a real need to explore why people with dementia may not be receiving high quality care, as well as how the different services work together. ”

Peter Carter, chief executive of the Royal College of Nursing, said today’s summit was a “golden opportunity” to improve dementia care.


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 1 December 2013

Terry Pratchett outside Parliament, London (David Bebber)

SIR TERRY PRATCHETT, the bestselling author who is suffering from dementia, has accused David Cameron of failing in his pledge to tackle the crisis caused by the disease.

In an article for The Sunday Times the acclaimed author of the Discworld series, who was diagnosed with Alzheimer’s in 2007, says he fears the prime minister’s promise to improve life for dementia patients and fund research into drugs to treat the condition may prove to be no more than a “podium promise for the press”.

“David Cameron made a solemn pledge one year ago,” he writes. “In what I hoped wouldn’t simply be a podium promise for the press, he announced intentions to double money spent on dementia research and to tackle the ‘crisis’ the condition is causing.

“By 2015, £66m would be invested into research for the condition. It was progress, but the cynic in me knows this wasn’t nearly enough.”

Pratchett, who supports the Alzheimer’s Society which campaigns and cares for sufferers, adds: “Where is the change or hope for the people who wake up every morning feeling more confused, or less able to connect with their loved ones because they’ve got it [Alzheimer’s]?

“David Cameron name-dropping the ‘d’ word did push the condition up the political agenda, but I couldn’t see evidence of a revolution.”

About 800,000 people in the UK have dementia but there are only three clinical trials in progress around the world. By contrast, there are some 150 trials globally into various forms of cancer.

In an interview Pratchett, 65, who takes a drug called Aricept to try to slow the progression of the disease, spoke of his hope that a G8 “dementia summit” in London later this month will reinvigorate the search for better treatments.

Terry Pratchett says he sees no evidence of a revolution in treatmentTerry Pratchett says he sees no evidence of a revolution in treatment (ADRIAN SHERRATT)Pratchett, who continues to write at the house in Salisbury, Wiltshire, that he shares with his wife Lyn, was highly critical of the authorities that fail adequately to punish carers found to have abused vulnerable dementia patients.

Citing the case of Patricia Young, a carer in Northern Ireland who ate the meals of an Alzheimer’s patient in front of her but was put on probation, Pratchett said: “Every time I see the news I hear that someone with Alzheimer’s, in a home, has been mistreated. I would like to see things happen to people that did that — having these people hung up by their feet.”

He added: “It is okay for the government to say, ‘We can do this and we can do that’, but they are supposed to be doing all this and all of that anyway.

"It is all about people with clipboards . . . It [abuse] has to be [dealt with as an offence] and it has to be done quickly and it has to be done properly and it has to be public.”

Pratchett, who was initially misdiagnosed, said GPs often failed to spot the signs of dementia and urged patients to push for a thorough assessment. His diagnosis allowed him to receive treatment and to meet others also suffering from posterior cortical atrophy, his form of Alzheimer’s.

While the author has said he would have an assisted suicide if he felt the time had come, he is concerned about those who are in a less privileged position.

“Let it be said that I have the money and the people to make certain that I know when I am going to die,” he said.

“I think there is a spaceship somewhere round about Jupiter that is waiting for me. It’s a little code.”

A spokeswoman for Jeremy Hunt, the health secretary, said: “This government has made tackling dementia an unprecedented priority and the prime minister has personally led the charge with his Dementia Challenge [that was] launched last year.

“We have made good progress domestically and are now leading the global fightback by bringing the G8 countries together to redouble international efforts to find effective treatments and cures.”


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Crisis over ‘21st-century plague’ of dementia

Regular exercise can radically cut the risk of dementia, scientists have found, as health chiefs from the world’s richest countries converge on Britain to fight “the 21st-century plague”.

Dementia patients deserve better from a civilised society, says Sally Magnusson

Magnus Linklater

Too many patients suffering from dementia are being let down by the institutions that are meant to be caring for them because they are no longer regarded as individuals, Sally Magnusson, the TV journalist, said yesterday.

Dementia in ethnic groups set for big rise

Tom Knowles

Dementia is forecast to rise sharply over the next ten years among Britain’s black and Asian populations — groups that are likely to receive the least support because of the stigma attached to the disease within their communities.

Dementia sufferers are hit by failings in care system

Katie Gibbons

More than half of dementia sufferers are receiving inadequate care or incorrect medication because of significant NHS failings in treatment of the condition, the Health Secretary has warned.

Alzheimer’s appeal

...first G8 summit dedicated to tackling the issue of dementia. Globally, more than 44 million people are dealing with this awful condition; a figure which will soar to 76 million by 2030. And as well as the human cost,dementia causes economic damage estimated at more than $604 billion...

World leaders must act

Terry Pratchett
  • The Sunday Times
  • Published: 01 December 2013
  • People

EARLIER this year I gave the government a hard time. I claimed that those in parliament were failing us.

Test will tell your risk of dementia

Jonathan Leake
  • The Sunday Times
  • Published: 08 December 2013
  • Health

DAVID CAMERON will use this week’s G8 summit on dementia to launch a UK research programme to identify those at risk before any symptoms appear.

Why carbs are destroying your brain

Barbara McMahon

...argues that the opposite is true and that we have much more control over our brain than we think. The origin of brain disease such asdementia is predominantly dietary, he says, and the result of us consuming too many carbohydrates (particularly wheat-based bread and pasta as well as...

Dementia patients at risk in struggling care system, watchdog warns

People with dementia are being put at risk because the health and social care system is struggling to cope, the care watchdog warned today.

Diagnosing early dementia ‘does more harm than good’

People with dementia are often better off not knowing that they have the disease, and screening for it would be a “disaster in slow motion”, an expert has claimed.

All dementia patients ‘to receive help’

  • The Times
  • Published: 16 December 2013
  • Scotland

Dementia sufferers under the age of 65 are to get improved access to care in Scotland under plans being explored by Alex Neil, the Health Secretary.

Mediterranean diet ‘reduces dementia’

The fight to avert a dementia crisis should prioritise a Mediterranean diet over “dubious” drugs, a group of doctors and health experts has warned.

Where Memories Go: Why Dementia Changes Everything by Sally Magnusson

Iain Finlayson

...decline into dementia, but by the effort Sally Magnusson has made to reach beyond her own bewilderment and grief. In this moving memorial, she seeks a deeper, better understanding of the disease, the medical services it requires and its devastating effect on families. Where Memories Go...

Dementia figures fall but women still suffer more

  • The Times
  • Published: 17 July 2013
  • Science

The number of people with dementia in Britain is falling far below previous estimates based on the ageing population, according to research.


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