ELDERLY Scots crippled by advanced dementia are paying an estimated £50.9 million a year for care that fails to meet their needs because the condition is not treated "as an illness", a landmark report has warned.
An expert group, chaired by former First Minister Henry McLeish, warned that sufferers and their families were being let down by a system that brackets advanced dementia as a social care - not a healthcare - problem.
Read more: Dementia is now leading killer of women in Scotland
The latest figures show that dementia is now the leading cause of death among women in Scotland, and prevalence is set to rocket as the population ages.
However, the report by the Fair Dementia Care Commission, established two years' ago by charity Alzheimer's Scotland, said people with advanced dementia "do not have equality of access to healthcare" on a par with other progressive terminal illnesses, and are "disproportionately subject to social care charges".
Those living in residential care homes are paying an estimated £49m a year in social care charges while those in the community stump up another £1.9m "for care which doesn't provide the health or nursing care they require", said the report.
It added: "It is right and fair that people living with advanced dementia have access to free health care - this would be no different from the expectations of people living in Scotland with any other type of advanced illness.
"However, the reality is that our current care system and cost frameworks do not respond to dementia as an illness, and this anomaly gives rise to serious and unacceptable health care inequalities."
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Existing provision of free personal care for the elderly, which funds washing, dressing, and basic help like meal preparation, does "not address the healthcare needs of people with advanced dementia".
The report calls on the Scottish Government to commit to investigating the costs of providing "appropriate and free health care" to people living with and dying from advanced dementia in Scotland.
It is also critical of the lack of transparency and variability across all 32 local authority areas in relation to social care charging, and calls on councils, the Scottish Government and local government umbrella body, Cosla, to commit to "more accurate recording and reporting of income from social care charging".
The crisis was described as a "human rights issue" by Donald Macaskill, chief executive of Scottish Care, adding that an "overhaul of social care funding" was required.
Mr McLeish, who chairs the Commission, added: "If we want to have the quality of provision in Scotland that they have in the likes of Scandinavia, you have to ask, who pays? And that raises the vexed question of taxation."
Read more: Better off elderly 'propping up' Scotland's troubled care home sector
Speaking at the launch of the report in Glasgow was Elaine Deehan, from Argyll, whose personal experience underlines the distress and upheaval advanced dementia wreaks on so many families.
Her mother, Patricia, now 82, was diagnosed with dementia in 2011 and by 2015 she was seriously ill. Mrs Deehan and her husband sold their home in England, where they had lived for 24 years, to return to Scotland, move in with her mother and become her full-time carers.
Mrs Deehan gave up her own career as an acute nurse, but admits she struggled with the emotional toll of being a carer. As her mother's condition deteriorated, the family pushed for her to get full-time residential care.
"We went through six residential nursing homes," said Mrs Deehan. "They all said they couldn't cope with her. She was very mobile - she was a rambler when she was younger, and she'd just go missing.
"In one of the homes she was admitted to A&E 11 times in ten months. She would fall. There were stairs, which weren't suitable for her. At one point she had a major gash to her head that needed sutured."
One three-month stay at one of the homes cost her mother £14,000, and another hiked up the fees by 13.% "with no explanation", said Mrs Deehan.
More than £100,000 in total has been spent on Patricia's social care since 2015, but that does not even include the thousands more that the family has spent on additional nursing care not covered by social care.
After four years, she has finally been granted a bed in a specialist NHS dementia assessment unit and is earmarked for admission to a long-stay NHS unit.
Mrs Deehan added: "It's only after a lot of pushing from us. If people don't have anyone to speak up for them, they've no hope."
Henry Simmons, chief executive of Alzheimer's Scotland, said: "I think most of the public would be shocked to know that someone who is unable to feed themselves, unable to go to the toilet, unable to consent, but they can be asked to pay for their care.
"There's been a blanket over this issue for too long."
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