We must redouble our efforts to help dementia victims – Alzheimer’s Society chief executive Jeremy Hughes

DEMENTIA is the biggest health and care challenge facing us today – yet the system is in disarray, completely unprepared to support the growing numbers of people receiving a dementia diagnosis.

The Alzheimer's Society is campaigning for greater support for dementia sufferers and their families.

People with dementia and their families face typical care costs of £100,000, and too many are receiving inadequate care.

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Since March 2017, people with dementia have spent more than one million unnecessary days stuck in hospital beds, despite being well enough to go home, at a cost to the NHS of over £400m.

Boris Johnson has promised action on social care.

This can’t go on.

The Alzheimer’s Society’s Fix Dementia Care campaign is calling on the Government to provide a long-term funding solution to end the social care crisis.

Government plans have been repeatedly delayed and we now need an immediate investment in an NHS Dementia Fund, to address the most urgent needs, improving quality of care for people with dementia across the country.

Social care is now a major political priority.

A diagnosis of dementia is life changing and Alzheimer’s Society is there to support people through the adjustments to everyday life that become necessary. It may explain why everyday tasks like going to the shops or cooking a meal have become more challenging, but the implications of that diagnosis not only affect the rest of the individual’s life and how they live it, it also has a massive impact on a family’s finances. The money that has been saved for a long and happy retirement – and perhaps to leave a legacy to the children – is instead swallowed up in care costs. The NHS doesn’t pay for social care – the individual and their family are the ones who have to spend their own hard-earned savings to cover the bills.

Dementia is, and has long been, a most discriminated-against condition. While the NHS provides free treatment for those diagnosed with heart disease or cancer – and rightly so – people with dementia are left at the mercy of a broken social care system. Despite being caused by diseases of the brain, dementia largely requires a ‘social’ rather than just a ‘medical’ response. As a result, a diagnosis brings financial punishment.

Jeremy Hughes is chief executive of the Alzheimer's Society.

This absence of state support for vulnerable people with dementia is an embarrassment. People are being forced to sell their homes and use their entire life savings just to pay for their basic care. Since the Green Paper on social care was first promised in March 2017, families living with dementia up and down the country have spent £15bn out of their own pockets on care costs.

And it’s not just people with dementia paying the price, the NHS is too. Alzheimer’s Society research found that, in just one year, over 70,000 people with dementia went into A&E because inadequate, under-funded or scarce social care left them vulnerable to avoidable emergencies like falls, infections and dehydration, at an estimated cost to the NHS of £400m. Stories like that of an 82-year-old rushed to hospital in a critical condition, barely conscious and hallucinating, because carers failed to notice or treat an infection, are tragically too common.

Surely we can do better than this for the 850,000 people in the UK living with dementia?

Sixty per cent of homecare recipients and 70 per cent of residential care residents have dementia; the social care crisis is a dementia crisis. There just isn’t enough money in the system to support people properly, and we can’t keep leaving it to those people unlucky enough to develop dementia to pick up the bill.

This is why Alzheimer’s Society is demanding long term social care reform, and calling on the Government to sustainably fund dementia care for the future. We need bold, decisive action and cross-party support to find a solution to funding social care that pools the risk of catastrophic dementia costs across society. By 2021, one million people in the UK will be living with dementia, and they will all deserve good quality social care.

But while a longer-term sustainable solution is found, we can’t afford to wait.

Alzheimer’s Society is calling for a dedicated NHS Dementia Fund to provide a lifeline to hundreds of thousands of people living with dementia who have already waited too long for decisive, political leadership on social care.

The dementia care system needs a financial boost now, paid for from unallocated money in the NHS Long-Term Plan, which puts people at the centre of their own care. This will give control and choice to people diagnosed with dementia and their families, supported by a team of professionals. The fund would allow people to access care earlier and, in the long term, would save the NHS money by cutting unnecessary hospital admissions. There is already overwhelming cross party political support for this proposal, with over 180 MPs backing the call.

The problem of social care and inadequate funding has been ignored for decades. It needs more than a sticking plaster approach, it needs long-term planning. Alzheimer’s Society is campaigning for a taxation solution or a system of auto-enrolment, similar to pensions, that would share the burden of dementia care costs across society, rather than it falling on the shoulders of those who are already coping with life with dementia and the personal challenges a diagnosis brings.

Jeremy Hughes CBE is chief executive of the Alzheimer’s Society.