The Alzheimer’s Society said today that thousands of people with dementia are being charged “significant amounts” for basic care which is often of poor quality.
The charity argues the means-tested system of care in England has created The Dementia Tax – the title of its new report – which drains people’s pensions and savings.
According to a survey of 2,300 people with dementia and their carers, more than two-thirds had to pay for help with basic tasks such as washing and dressing, with the majority paying at least £100 a week.
More than half of people with dementia living in care homes contributed more than £300 per week towards the costs of care, with 53% using savings and 80% state pensions.
Sixty-eight percent of people accessing home care services made a contribution to the cost.
Only 39% of people with dementia living at home said they were receiving all the help from social services that was needed, and 47% believed they received enough information about services available to them. Only 19% of carers said they received all the help they needed.
The decreasing number of local authorities providing help for lower-level to moderate needs and rising care home bills left service users and their families feeling “ransacked to prop up a system which cannot guarantee good quality care”, according to the charity.
“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,” said Neil Hunt, chief executive of the Alzheimer’s Society.
“We must scrap the dementia tax and gain a political consensus on a move towards a transparent, sustainable and fair system.”
The report comes a week after the government launched a consultation on a national dementia strategy for England, expected this autumn, while consultation on the government’s green paper on the future of care and support is also ongoing.
But any new settlements could take five to ten years to implement, and “will not come soon enough”, the report said.
In the meantime, it called for an increase in the rate of attendance allowance – which is paid to disabled people over-65s either living at home or self-funding their residential care – and the income and capital thresholds determining care charges. These are set nationally for residential care and locally, under national guidance, for home care.
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