Dementia costs crisis deepens after it emerges 770,000 people have been refused state support

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More than 770,000 elderly people have been refused state support since the Government pledged to reform the broken care system.

The shocking figure emerged amid growing pressure on the new prime minister to tackle the social care crisis that burdens families with crippling dementia costs.

More than 20,000 readers have signed the Mail’s petition to end the dementia care cost betrayal since it was launched on Saturday. 

As support flooded in, official figures revealed that 895 people a day have been turned down for local authority care since ministers promised reform in March 2017.

It means more than three quarters of a million families have had to find the money to care for elderly relatives, during which time politicians have delayed their plan six times.

Anyone who has more than £23,250 in savings – including the value of their home – is rejected for state-funded care. In the two years and four months since the green paper was promised, nearly 9,000 families have had their savings run down below this threshold, meaning they have become eligible for support having been originally turned down. 

In the same period, 66,684 people have died while waiting for care.

Those with dementia – who make up about two-thirds of those in care – have borne the brunt of the delay.

The figures, collected from councils by NHS Digital and analysed by the Age UK charity, lay bare the scale of the crisis facing hundreds of thousands of families.

Last week the Mail launched a campaign calling for ministers to end the scandal. An exclusive poll for this newspaper found that one in three people with dementia have been forced to sell their home to pay for care.

Since then, Tory leadership contenders Boris Johnson and Jeremy Hunt have both echoed our call for urgent reform.

Families have spent £15 billion over the past two years supporting relatives who have the illness. And yesterday it emerged that families are spending twice as much on fees for relatives in care homes as they did a decade ago.

Research shows that ‘self-funding’ for care home places rose from £3.97 billion in 2007 to £7.74 billion last year – an increase of 95 per cent.

Age UK has calculated that since March 2017 more than a million older people have developed a need for care, such as needing help with washing or dressing, that has not been met.

Caroline Abrahams, from Age UK said: ‘It is appalling that so many older people who need help have been turned down for care, that well over a million are living with an unmet need for care and, most tragically of all, so many have died waiting for their care to be put in place.

‘In the real world older people and their families are suffering every day in huge numbers because of ministers’ lack of firm action on social care.

‘There is a desperate need for certainty and stability, to help providers to hold on to good staff and deliver great care.’

The Mail is calling for an urgent formation of a cross-party group to tackle the funding crisis – tasked with dealing with the issue once and for all. In the meantime, the Government must set up a ‘dementia fund’ to help families pay the extra cost of supporting those affected by dementia. 

And it must end the ‘double subsidy’ which sees those deemed able to afford to pay for care subsidising the costs of support for those funded by the state.

Sally Copley, director of policy at the Alzheimer’s Society, said: ‘It’s frankly immoral that over three quarters of a million people have been denied their right to financial support to pay for vital care, especially when the majority are likely to have dementia.

‘It doesn’t have to be like this. With a sustainable long-term plan for funding the care system, we could finally see good quality dementia care in this country, for everyone who needs it.’

Sophie Andrews, chief executive of Silver Line, a charity providing support to older people, said: ‘There has been a worrying lack of focus and direction which has led to the inexplicable delay to the social care green paper.

‘People facing a dementia diagnosis, and their families, have so much to worry about as it is without having to face this ongoing uncertainty about how to pay for care. We fully support the campaign to make this a priority now.’

My Dad, like so many of his generation, was careful about money. He counted every penny. He was the kind of man who thought that having an overdraft was stealing from the bank. He worked hard all of his life in the hope that he would one day be able to leave my sister and me with a nest egg when he died.

But, in 2001, any hope of that was wiped out in one short, shocking sentence in a doctor’s office: ‘I’m sorry to have to tell you, but your father has Alzheimer’s.’

I clutched my husband’s hand. The words filled me with dread. But even then, I couldn’t begin to imagine the trauma we would have to endure during the next three years before my Dad’s death – not just the awful physical and mental symptoms, but the callous refusal of government to assist our family with the huge financial cost.

As the Daily Mail revealed last week, one in three people with dementia have to sell their home to pay for care that can cost as much as £100,000 a year.

Thanks to an outrageously misguided definition of what constitutes ‘health care’, the expense of carers, equipment and care homes are treated by the Government not as medical bills but as ‘social’ costs – to be met by the sufferer.

The state steps in only if the patient has less than £23,250 in savings, and that includes the value of any property.

That dementia is singled out in this way defies belief. It is nothing short of scandalous that hard-working families have shelled out £15billion in the past two years to care for loved ones. If my father had been diagnosed with cancer – as my Mum was, almost 50 years ago – the NHS would have surrounded him with care and concern, practical and emotional support. But because he had an illness that was digging into his brain, he had to be cared for at his own expense.

It is as though people with dementia are being punished by our Government for having the temerity to die that way.

At first, before I understood what dementia meant, I found Dad’s lapses of memory lovable and amusing, or at worst a bit annoying. This was 20 years ago, when society’s understanding of the disease was, like mine, far from developed.

But his behaviour soon became strange and frightening, to him and us: He couldn’t remember people’s names, he couldn’t remember where he was meant to be, he even forgot to feed his dog, or he fed his dog five times in a day.

Within a couple of days of the diagnosis, we were paying for Dad’s care. I was working in London, and my sister lives abroad, so we hired carers. Initially, they came twice a day, to cook, chat and see he was OK.

I tried to visit every weekend, but it was a three-hour drive and I didn’t always make it.

After 15 months, Dad needed two carers with him. He was increasingly agitated and could fly off the handle.

It was horrible: this former Army major who never left the house without checking his hair now dribbled around the house, with egg stains on his cardigan.

And the cost: Two live-in carers would set us back about £40,000 a year, and this was almost two decades ago. We couldn’t go on.

After he had an initial spell in our local hospital, we had to find a home. There was no prospect of getting any contribution from the state, even though Dad had faithfully paid all his taxes and contributions throughout his life.

My sister and I sold his lovely tudor house in Shropshire for £350,000 to fund his care.

Any home for advanced dementia is the last place in the world you’d want to be, and I am glad that my father only lived there for a few months.

Pneumonia carried him away one early November afternoon in 2004. By that point, we had spent almost £100,000 on his care.

I am still angry. Angry that no one came and asked us if we needed any help with my father, angrier still that, even after all these years and all the knowledge we now have, the Government refuses to foot the bill. We were promised dementia reform in March 2017: It has been delayed six times. It beggars belief that the NHS does not cover laundry services or meals on wheels for dementia patients.

Yet the Government wriggles out of its responsibilities by saying that they will pay for medical care, but not for social care.

Since my father’s death, I have become a patron of the Alzheimer’s Society and I have seen and read about the explosion of cases like my own.

And while no two people are the same, there are common elements to every story: The despair, the fear, the loneliness, the increasing inability to care for the sufferer… and always the implacable will of the Government not to help the victims.

I wonder what we will all have to do to make the Government understand that dementia is an illness, like any other. Its needs are clear and very tangible. Social care – the work that is done to keep people in their own homes and out of care homes – massively reduces the burden on the NHS. It is far, far cheaper to help a sufferer live at home for as long as possible. The state should be falling over itself to encourage us to do just that.

And when that becomes impossible, as inevitably it does, they should be afforded the dignity of a comfy bed in the NHS, taken care of in their last days, secure in the knowledge that their children and loved ones are not losing out because they are ill.

This is the society we all deserve. It is time the Government made it a reality.

More than 20,000 Daily Mail readers have already signed our petition demanding an end to the dementia care crisis.

This newspaper is calling for the Government to end its disgraceful neglect of families living with the burden of dementia.

On Saturday morning, we launched an online petition – found at change.org/dementiacare – so our readers can make their voices heard and send a powerful message to the new prime minister.

The 20,000-signature mark was passed last night.

The petition is calling for an end to the scandal that forces hardworking families to sell their homes to pay for dementia care.

It also demands the urgent establishment of a cross-party group to tackle the social care crisis, and the creation of an NHS ‘dementia fund’ to help families pay the extra costs of caring for those with the illness. 

The petition is being led by Mail reader Sharon Muranyi, one of thousands of Britons forced to sell their family homes due to the social care funding crisis.

Earlier this month Mrs Muranyi, 59, sold her 92-year-old father Fred Hickman’s beloved thatched cottage to pay for his dementia care.

‘We need as many signatures as possible so the new prime minister realises the scale of the problem and addresses this urgently,’ she said. ‘My father and hundreds of thousands of others deserve better.’

Mr Hickman, a Second World War veteran and former policeman, was diagnosed with vascular dementia in 2016, and had to be moved into a care home last May. He had saved prudently all his life, and had more than £23,250 in assets, so was not eligible for council social care funding.

Mr Hickman’s family had to pay the full cost of his care, spending a total of £120,000 over two years. Despite all of his police and state pension going on his £1,200-a-week care home fees, it wasn’t enough.

So Mrs Muranyi was forced to make the heartwrenching decision to sell her father’s cottage in Worcester, which he had owned since 1974.

She said: ‘He had lived there for the past 45 years and it was heartbreaking to see him leave it. But the lack of financial support from the Government meant it had to be done. He was a prudent saver all his life but has been penalised for it.

‘My father spent his life in public service.

‘But when he needed it most, he was deserted.’

Support for our campaign has flooded in from readers, charities, doctors and care organisations.

Caroline Abrahams, charity director at Age UK, said: ‘We encourage everyone to sign the Daily Mail’s dementia care petition – we need to put older people’s minds at rest.

‘We have heard and continue to hear of older people haunted by the fear of running out of money to fund their care, of having to sell up during their lifetimes, or of being able to get only inadequate care.

‘Their concerns are very real and they make life miserable.’

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