Over 60 MPs support Alzheimer’s Society’s call for new £2.4bn Dementia Fund

An Alzheimer’s Society report calling for a new £2.4 billion Dementia Fund, while showing that people with dementia face an average 15% higher social care costs than others, has received backing from 68 cross party MPs after an open letter was delivered to Matt Hancock before the report’s official launch.

The new report, launching today, calls for urgent investment in high-quality, person-centred care through a dedicated Dementia Fund to end the dementia penalty people face when paying for care. 

The letter, written by MP Rachael Maskell, Chair of the APPG for Ageing and Older people, received 68 signatures, including MPs from the Conservative, Labour, Liberal Democrat, Green and Change UK parties. The letter addresses the social care system struggles, and the need for urgent investment into services and support for people with dementia in absence of the long-awaited social care Green Paper.   

People with dementia are faced with higher costs for their care, costing an average 15% more than if they had standard social care. Typically, people with dementia spend £100,000 on their care – an astronomical sum, which would take 125 years to save for – well over a lifetime. 

Due to the current failings of the social care system, people with dementia often needlessly end up in A&E with dehydration, an infection, or due to a fall. For some, when they are unable to return home they can wait up to a year in hospital for a care home place. A quarter of hospital beds are taken up by people with dementia, and these avoidable admissions are draining millions from the NHS – our report found 72,496 emergency admissions of over-65s with dementia (2016-2017), an increase of 70% in just 5 years, costing the NHS an estimated £400 million.

The charity argues that the Dementia Fund would benefit the NHS in the long term, meaning fewer people living with dementia are forced to go to A&E at crisis point, and would ensure better support is in place to enable people living with dementia to leave hospital as soon as they are well enough. The Fund would help NHS Long Term Plan plans to revolutionise community care, which are being fuelled by a £3.5bn cash injection. Providing choice and control and delivered through integrated commissioning, the Dementia Fund could provide a lifeline to hundreds of thousands of people living with dementia.

Ruth Sharp, from Bournemouth, whose mother Mary has vascular dementia, was denied help from social services because they argued Mary could still use the toilet, even though she forgot to eat meals, flooded the bathroom, and almost set herself on fire with the cooker. Ruth and her family were so desperate they had to disconnect the gas. All they could afford was a private carer to come two mornings a week to take Mary out for coffee.

Despite the family’s best efforts, Mary suffered a fall at home and cut her head. She spent a month in hospital before going to a care home, paid for from selling Mary’s home. Although the care home was good at first, it changed management. Fewer staff, and a lack of dementia training led to a serious deterioration in Mary’s condition – leaving her bedridden, underweight and uncommunicative.  Ruth has since moved Mary to a new home where she’s finally getting good care, but this home costs an extra £500 per week.

Ruth is now battling cancer for the second time in her life, and reflects upon the injustice between the difference of care between her and her mother’s illnesses. Her cancer treatments and needs are being completely funded by the NHS, but her mother and the family have been left to pay huge costs to ensure sufficient support for Mary.

Ruth said:

'We have fought in the past for help with funding, but we have accepted that it isn’t a fight we can win. Any money that our mother has or that goes into her bank will go to paying towards her care. And despite dementia being a medical condition, it is a battle to get help to pay for medical care'.

Jeremy Hughes, Chief Executive at Alzheimer’s Society, says:

'Social care is in a desperate state, in urgent need of a complete overhaul. Decades of underfunding have left people with dementia struggling with a system that is unfair and unsustainable. The injustice of people battling to get care, on top of battling the devastating effects of dementia can’t go on.

'If you develop cancer or heart disease, your care is covered by the NHS. People with Alzheimer’s disease and other forms of dementia have the right and expectation that the NHS will also support them. We are calling for urgent investment in high quality care through a dedicated Dementia Fund. It’s time to end the dementia penalty that‘s preventing people from getting the care they need and deserve.

'The overwhelming cross party support shown through the open letter to the Health Secretary illustrates how indisputable this crisis is. A Dementia Fund will provide help now to remedy the situation for people with dementia, while we wait for the Green Paper and a long-term sustainable funding solution for social care.'

As The King’s Fund revealed last week, despite rising demand, nearly 13,000 less people are receiving social care support and local authority spending is £700m less than it was in 2010/11.

The injustice for people with dementia was recognised during the ‘dementia tax’ debate in the 2017 general election, and echoed last week by Damian Green when he described the ‘dementia lottery’ that people are facing when trying to access care.

Alzheimer’s Society is calling for a £2.4bn Dementia Fund, mapped within plans to deliver the NHS Long Term Plan and then established in the upcoming Spending Review. This will end the dementia penalty, bringing fairness into the system and improving quality of care while a long-term funding solution is sought. Support the Fix Dementia Care campaign by visiting alzheimers.org.uk/fixdementiacare.