SCOTS with advanced dementia cannot wait until the new National Care Service is set up to benefit from fairer care home costs, a charity leader has said.

A campaign by Alzheimer Scotland - backed by The Herald - to end a 'dementia tax' which sees those with the illness paying for care that would be free for other terminal illnesses has received cross-party support from the Green Party, Labour and the Liberal Democrats.

The Scottish Government has pledged to implement the recommendations of Derek Feeley's report on adult social care which will result in an almost doubling of 'free' personal care and nursing contributions.

Alzheimer Scotland say this is a welcome step forward but want to the see the changes implemented ahead of the National Care Service being introduced, which it says may be four or five years away.

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The charity would also like the government to re-examine the upper capital limit for care home self-funders, which is currently £28,750.

A public consultation was launched last week, which the government said will help inform the new care service.

Jim Pearson, Director of Policy and Research for Alzheimer Scotland said: "This is one of the most significant, transformative changes that we have since the introduction of the National Health Service.

"Whatever, it ends up looking like, it's four or five years away and there are people today who are living with dementia who don't have four or five years to wait.

"We cannot wait for the National Care Service to come along to sort out the issue over how much people pay for their care who are in the advanced stages of dementia.

"We want action on that now. We want to see the commitments they have already made, at least, to be implemented - and that is the increase in free personal and nursing care, which almost doubles it and abolishing non-residential costs.

"The recommendations in Feeley are good - that's a substantial increase but it doesn't address the issues for people who are self-funding.

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"These are not all wealthy people, they are people who happen to have bought their own council house 20 or 30 years ago and it's modest amounts of capital that are putting them into the position of self-funding and ending up paying these exorbitant fees."

Boris Johnson has suggested the UK government may opt to raise National Insurance Contributions to 'fix' social care. 

Mr Pearson said there is merit in opening up the discussion north of the border.

He said: "In Japan they have a tax that everyone over 40 pays. There are lots of different models. For me, that's a national conversation.

"If this is the type of health and social care service we want in Scotland, it is absolutely appropriate that you have a discussion with the public about how society will pay for it.

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"I think that as a society we need to think about how we value peoples' lives at every stage."

Alzheimer Scotland said its response to the National Care Service consultation will be shaped by the views of those affected by dementia and their families.

The charity has already highlighted its concerns about delays in diagnosing patients and a disparity in post-diagnosis support, which have been exacerbated by the pandemic,

Mr Pearson said: "We know that even before the pandemic fewer than 50% of people who should have been entitled to post-diagnostic support were being offered it. We know there are some steps being taken there but we need to see greater investment in this.

"We want to make sure that our response is informed by what people with dementia and their carers are telling us.

"It's critical that we get this right and it's critical that people who will be using the National Care Service have a say in what that looks like."

Anyone wishing to share their experiences of dementia with the charity can email