Alzheimer's Society's view on charging for care

Find out what we think about the issue of funding of care and support, which affects people with dementia, carers and families.

Alzheimer’s Society has campaigned for many years to end the 'dementia tax'.

At present, two-thirds (£22.2 billion) of the cost of dementia is paid by people with dementia and their families, either in the value of unpaid care (£13.9 billion) or in paying for private social care (Alzheimer’s Society, 2019).

This is in contrast to other conditions, such as heart disease and cancer, where the NHS provides care that is free at the point of use.

Typical dementia care costs around £100,000, although this can be as much as £500,000.

Alzheimer’s Society research has found that if people were to save for the cost of their dementia care (at the same rate as their pension), they would have to save for 125 years (Alzheimer’s Society, 2018).

Delivering care for people affected by dementia is on average 15 per cent more costly than standard social care (Alzheimer’s Society, 2019) and can cost up to 40 per cent more than for people without dementia.

Moreover, people with dementia and carers are paying for services that often do not deliver good quality care. Alzheimer's Society has found that people with dementia are willing to contribute to the cost of care but want a system that shares the cost of care between the individual and the state.

What is Alzheimer's Society calling for:

Alzheimer’s Society supports the Care and Support Alliance’s call that care should be free at the point of use and risk must be pooled on a compulsory whole adult population basis, funded through taxation.

With universal free care, people with dementia could be confident that they will receive the care they need, when they need it, without risk of extra costs. Many people anticipate dementia care is available for free.

In our 2018 survey of the public, half of respondents incorrectly believed the costs of dementia care are covered by the NHS. In reality, they would pay these costs themselves.

Eight in ten people don’t know the typical cost of care.

With one in three people born today predicted to develop dementia, it is impossible to tell who will in future require care and support. With a growing and ageing population, it is vital seeds are planted towards a new way of approaching care for future generations, providing reassurance to individuals and families.

We believe a system that funds social care on the same basis as the NHS and schools will enable a sustainable, innovative system of care

Immediate investment of £8 billion to stabilise the social care system

After decades of increasing demand without equivalent funding rises, adult social care is on the brink of collapse.

Annual funding is £700 million below 2010/11 levels (The King’s Fund, 2019), resulting in many councils facing significant funding pressures, with family carers having to pick up more and more of the support previously provided by care professionals.

The House of Lords Economic Affairs Committee (2019) called for £8 billion in funding for adult social care by 2020/21, to restore quality and access to 2009/10 standards.  

Alzheimer’s Society estimates that £2.65 billion of that money would be spent on care for people with dementia, to improve the devastating financial and emotional impact they and their families face when accessing care.

End the Dementia Penalty and injustice of dementia

The Dementia Penalty is the extra cost people with dementia face to cover their needs as a direct result of the health condition they have developed.

Reform of social care must recognise the complex care needs of dementia and the debilitating costs currently being borne by families.

People with dementia should have the same right to care as people with other conditions, without excessive, unfair costs.

We want to see an end to the Dementia Penalty, the unique injustice of dementia, and support a system that delivers demonstrable improvements in people’s lives

There needs to be a national debate

We are concerned that the proposals of the Dilnot Commission for a cap on the cost of care will only help a small number of people and people will still be liable for so-called 'hotel costs' – the cost of living in a residential care home. In addition, the Dilnot proposals do not address the chronic underfunding of social care.

Alzheimer’s Society calls for a national debate about how to improve quality, meet the level of unmet need, abolish the postcode lottery and end the dementia tax.

Improved financial support for carers

Many carers of people with dementia are worse off as a result of reduced income from work and higher costs (CEBR 2019). This is despite the fact that carers of people with dementia save an estimated £13.9 billion every year (CPEC, 2019).

Carers’ allowance should be increased and the unfair cap on carers’ earnings per week ended so that more people are able to afford to care.

Services for 'moderate' care needs

Alzheimer's Society believes that the current system of social care does not constitute a 'safety net' as only poorer people with high levels of need are eligible for publicly funded care. This in contrast to the NHS, which provides care that is free at the point of use.

Alzheimer’s Society calls for free care and support to be provided for 'moderate' need. There are nearly 200,000 people with moderate dementia with care needs in England.

Investment in care to protect the NHS

There can be no sustainable NHS without reform of social care funding.

The NHS Long Term Plan itself acknowledges how frustrating it is 'for the emergency patient in A&E waiting for a bed still occupied by someone stuck in hospital waiting for a social care package at home'.

Lack of care and support results in unnecessary hospital admissions and keeps people with dementia in hospital for longer.

40,000 people with dementia were stuck in hospital for over a month in 2017/18 alone, at a cost of £165 million (Alzheimer’s Society, 2020).

There were more than 70,000 potentially avoidable emergency admissions of over-65s with dementia at an estimated cost of £400 million in 2016/17.

Funding the care system appropriately will both enhance the sustainability of the NHS and enable a fair, affordable and high-quality social care system.

Improved care quality

The debate on future funding for social care is taking place in a context where people have to pay for care that can often not be of high quality.

In order to address current widespread failings, the regulatory system must be strengthened and incentivise high-quality provision.

For more information, please see our position statement on Care regulation.

Campaign with us

Join our campaigns and help us fix the broken dementia care system. We want to make sure that every person affected by dementia gets the care and support they deserve, when they need it.

Find out more

References and further information

Last updated 31 July 2020

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