Alzheimer's Society calls for end to Dementia Tax

The Dementia Tax shows that over two thirds of people with dementia are paying for basic care, such as help with washing, dressing and going to the toilet, as a result of their medical condition.  The majority of people are paying at least a £100 a week towards the costs of care.

Based on an Alzheimer's Society survey of over 2,300 people with dementia and their carers in England, the report found that;

• People with dementia living in care homes are hit the hardest with over half of people paying over £300 a week towards their care.
• Two thirds of people caring for a person at home pay for vital care with one in three paying over £50 a week. The biggest cost was for help with personal care such as eating, washing or using the toilet.
• 77 per cent of carers who use respite services in care homes have to pay towards the costs of this vital break, with one in three paying over £150 a week
• Only half of people with dementia who live at home are getting all the help from social services they need.
• Charging increasingly affects people from all backgrounds. The report found that 40 per cent of manual and service workers are contributing more than £300 per week towards their care.

The charity argues that the current system of means testing for social care is a tax on people with dementia whose care is deemed to be social care, rather than health care free on the NHS. 

Neil Hunt, chief executive, Alzheimer's Society says,

The dementia tax is persecuting thousands of people from all walks of life who are being hit hard by a system that provides poor care at a huge cost. The horrific truth is that the current charging system leaves vulnerable people who have a devastating and incurable condition to pay for essential help. We hear from people who have to pay for care out of money they need to heat their houses and buy food.

It is not unreasonable to ask people to make a contribution towards the cost of their care, but people will not pay to prop up a broken system that fails to deliver quality care.

We must scrap the dementia tax and gain a political consensus on a move towards a transparent, sustainable and fair system. Until then short term emergency measures need to be put in place to prevent the collapse of this broken system.

Writer AA Gill, an Alzheimer's Society Ambassador says,

Dementia is not a natural part of ageing and can strike any of us. One in three of us who live to be over 65 will die with this condition, yet the way we treat people with dementia is one of the nation's biggest social scandals.

As a diagnosis of dementia robs people gradually of their lives, they are being robbed of their finances to pay for vital care and support. It is time to scrap the dementia tax and introduce a system of care that is simple to understand, doesn't discriminate based on condition or age and provides good quality care.

Edwina Jarvis, who cares for her father Raymond says,

Dad had an accountancy business and was exceptionally frugal, ensuring that he and Mum had savings for their old age. He paid tax and national insurance throughout his life. Never in his wildest dreams did he anticipate needing to live in a specialist nursing home and pay £40,000 a year out of his own pocket for the privilege.

This high cost only pays for basic care. On several occasions we have found him sitting in his own urine and he often gets meals like spaghetti hoops and turkey twizzlers. It is heartbreaking to see that my father has been robbed of his life savings to pay for this, simply because of the way his illness is classified.

Eve Salisbury a carer for husband John says,

It broke my heart to put John into residential care. By the time I did, John needed 24 hour supervision. I was physically exhausted and getting out of bed was becoming a struggle. John's pensions now pay for most of the £406 a month I pay for care, but I have to make up the extra.

When they made a £10 increase in care fees I thought; I'm going to have to stop having milk delivered. Basic things like that, because that's £4.80 a week and that will cover half of it.

Alzheimer's Society's report is published during the Government's public consultation on a new system of paying for care. It sets out long term and short term recommendations to end the way the charging system discriminates against people with dementia.

Alzheimer's Society wants all political parties to outline their plans for a new fairer system of who pays for care and a political consensus to be reached.

About 'The Dementia Tax'

The Dementia Tax is a report based on an Alzheimer's Society survey of over 2,300 people in England with experience of dementia care and is supported by qualitative findings of focus groups.  It explains what care people are receiving, what they are contributing towards the costs of care, and makes recommendations for the future.

Please note: The report will be available later this morning (Thursday 26 June).

Read the summary of our findings

Find out more in our campaign section www.alzheimers.org.uk/action