An exploration of the UK carer world

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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pagetop here   for pasting   The Times - dementia coverage - 2 Feb 2014 and back  here

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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pagetop here   for pasting   The Times - dementia coverage - 2 Feb 2014 and back  here