A care sector leader has issued a clarion call to the Scottish Government to fix a “grotesque inequality” in dementia support as part of a major overhaul of services.
Donald Macaskill, chief executive of Scottish Care, said ministers must explain how they will tackle the “dementia tax” affecting tens of thousands of Scots before the new National Care Service is established.
Mr Macaskill, whose mother died of the disease, said the fact that people with advanced dementia pay for nursing care that would be free for any other terminal illness was “an abuse of human rights and dignity”.
The root of the problem, he said, is that people with dementia are assessed “under the prism” of social care rather than healthcare.
“Why is dementia so different to other terminal conditions?” said Mr Macaskill. “It’s unequal, it’s unfair, and it needs to stop.
READ MORE: SNP criticised for 'failing to even mention' dementia tax in care consultation
“This is naive ignorance. It is a denial of the clinical reality that dementia is a disease first and foremost and one that requires significant clinical and health service intervention alongside social care support and re-enablement.
“Where this simplistic dualism is seen most acutely is in how society resources and finances dementia care – or to be more accurate does not finance it.”
Mr Macaskill said he “fully supported” Alzheimer Scotland’s Fair Dementia Care campaign, which is backed by The Herald.
He said a planned rise in free personal and nursing care contributions, which will almost double support, would not be sufficient to address the problem.
He said: “Self-directed support – or individualised support – should be the right of all including those with dementia, as should the right to be allocated an individual budget – something we have failed to do for nursing and residential care residents.
“This is a serious shortcoming which serves to perpetuate discrimination and inequality.
“It is wholly iniquitous that if diagnosed with dementia one has to sell one’s home to receive residential nursing home support.
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“Now credit where it is due, the Scottish Government have committed to extending free personal and nursing care to better reflect the true cost of care and have recognised the gap between the true cost and the reality of underfunded rates in our care homes. But that does not go far enough.
“People who have lived with dementia, and those they love, have known for years about the grotesque inequality of the funding of care and support.”
“It is a knowledge that should shame those who make political decisions and exercise fiscal oversight.”
In an emotive and deeply personal blog post published on the Scottish Care website, Mr Macaskill referenced his own mother’s struggle with the disease.
He said: “Having worked until her early 80s, her decline seemed so rapid and yet so inexorably slow.
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“This was a woman whose solution to all of life’s traumas and ills was the making of a cup of tea.
“Then came that moment when she had forgotten the steps of her healing ritual and stood frightened in an empty moment without remembrance. She had forgotten how to make a cup of tea.
"The stripping of inner knowledge is one of the obscenities of this disease.”
A public consultation on plans to create Scotland’s new National Care Service is due to conclude in November.
The UK Government has said Scotland will receive roughly £1.1 billion from a planned rise in National Insurance contributions, which must be allocated to social care.
Alzheimer Scotland’s campaign is backed by Scottish Labour, the Conservatives and the Green party.
A Scottish Government spokesman said: “We are committed to delivering a National Care Service by the end of this Parliament in order to help improve the provision and consistency of care services across Scotland, with tackling inequality at its heart.
“We recognise care costs can be high, including for those with dementia who have significant health and care needs, which is why we have already uprated nursing care contributions.
"We are also committed to removing all non-residential social care charges in this parliament, and we are currently consulting on further increases to bring Free Personal Nursing Care rates into line with the National Care Home Contract.
In response Mr Macaskill said: "The commitment to the National Care Service is clear but the consultation document is silent on the issues raised by Alzheimer Scotland and myself and on how it’s all going to be paid for."
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