DEMENTIA campaigners have urged the Scottish Government to scrap a 'cap' on the financial support given to those in the advanced stages of the disease for nursing costs in residential care.

Henry Simmons, Chief Executive of Alzheimer Scotland, paid tribute to Barbara Windsor following her death at the age of 83, and her campaigning efforts which he said  had taken dementia “out of the shadows”.

After being diagnosed with Alzheimer’s Disease the actress and her husband led efforts in England for greater financial support for patients and their families and met with Boris Johnson, who has agreed to a review.

Mr Simmons said Scotland was ahead of England in dementia strategy, a national review of health and social care is already underway, but he said any changes could be at least five years away.

The charity wants the government to remove the standard, minimum contribution from local authorities towards nursing costs, with care home residents instead, assessed on their individual needs.

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For those in care homes who are self-funding, the state contributes £180 a week towards personal care and £81 a week for nursing care.

Mr Simmons says these amounts are not reflective of the true cost of the care required for people with advanced dementia who require intensive nursing.

More than 15,000 Scots have backed Alzheimer Scotland’s Fair Care campaign, backed by the Herald and the charity is calling for a manifesto pledge from each of the political parties in support of this, ahead of next year’s elections. Labour's Monica Lennon has already signalled the party's support.

“It’s tangible, it’s real and it’s possible,” said Mr Simmons. “This is an inequality that can be fixed.

“There will be thousands of people with advanced dementia who have passed away with coronavirus and they have still had to pay for their care. 

“You have people living in residential care who can’t walk, can’t toilet, can’t shower, doesn’t have the capacity to consent and yet we still take money from their bank account to pay for that care?

“It is perfectly reasonable for people to pay for their accommodation and their ongoing support but the part they shouldn’t pay for is their nursing care or personal care component.”

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Paying tribute to Barbara Windsor he said: “What Barbara and her husband did was draw dementia out of the shadows. 

“She got a personal commitment from Boris Johnson that they would look at financial support. 

“We already have a commitment of a review in Scotland but we won’t see the benefit of that for years. 

“There is a really simple solution that would solve part of the problem. 

“Free care contributions are set at a minimum  level. If that standard was removed and people were actually assessed properly for the level of nursing and personal care they require, that should then be paid for by the state.

“That would move from people only receiving a contribution in nursing care from around £90 to something like a £500 contribution.

“We are looking for the free nursing care component to be reviewed, to be opened up and assessed against needs. It’s a simple ask.”

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He said the impact of the pandemic had been devastating for those with dementia, at all stages of the illness.

Figures from the National Records of Scotland show the number of deaths registered at the height of the coronavirus pandemic from dementia and Alzheimer’s disease rose by a quarter.

Those in the earlier stages of the disease missed out on community support and the help of designated link workers.

Mr Simmons said there was evidence many people with dementia had been admitted to care homes years earlier than anticipated because their condition deteriorated at a faster rate.

“There are probably around 7000 people who haven’t received the same quality of post-diagnostic support that they would have had,” he said.

“Our link workers have done their best but they have had to do it all by phone or online. We have a group of people who still need an extra level of post-diagnostic support.

“We also have another group of people who might have had a delayed diagnosis or who also need support. 

“There are people who were using our community services and living quite well with dementia and the impact on them has been substantial.

“What is obvious to us is that they have declined quite rapidly.  

“There are those who were more advanced and who used our day centres, their needs have really progressed and we are seeing a lot of people who have had to be admitted to residential care.

“We’ve had to wait six months to get our resource centres open and it’s been a detailed and difficult process but I’m delighted to say we now have services open in Glasgow in Bridgeton, Midlothian and Dundee.”

In response to the charity’s call to scrap the set contribution towards nursing and personal care costs, Scottish Greens MSP John Finnie said:

“It’s essential that every individual gets all the support they need. This should be determined by medical professionals, not an arbitrary financial cap.” 

Labour health spokeswoman Monica Lennon said: "Last year in a parliamentary debate I backed the Alzheimer Scotland campaign for free nursing care for people with advanced dementia and Scottish Labour is committed to delivering this.”

A Scottish Government spokesman said: “The Independent Review of Adult Social Care, chaired  by Derek Feeley, is taking a human-rights based approach and will comprehensively review all aspects of adult social care, including how it is organised, commissioned, regulated and funded.

“It will report next month and we will fully consider its recommendations to ensure the best service possible for those who use and work in our adult social care service.”