“This is about trying to right a wrong. It seemed to me such a glaring inequality.”

Former First Minister Henry McLeish says he didn’t hesitate when he was asked to get involved in a campaign by Alzheimer Scotland, backed by The Herald and Evening Times, to free up the medical costs faced by people in the advanced stages of dementia and their families.

His motivation was both personal and political – his late father had suffered from dementia but he also wanted to use his influence to help force change in Scotland.

The former Labour leader was responsible for delivering free personal care for the elderly in Scotland during his short tenure leading the Government in 2000/01.

Earlier this year he helped launch the Fair Dementia Care Commission report, which details the heavy financial cost and bureaucratic minefield families face if a relative is in the final stages of the illness.

The charity argues that medical costs for treating people with advanced dementia should be free in the same way they are for other progressive and terminal illnesses, including cancer.

It says dementia is not treated as an illness with progressive and complex physical and cognitive symptoms, and needs are assessed as social care rather than healthcare, which leaves individuals and their own families facing “disproportionate” charges.

READ MORE: We need to change attitudes about dementia

“In Scotland, we love to talk about tackling social injustice and this is about trying to right a wrong,” says McLeish. “It seems to me that most people think that dementia is a health issue and so many people don’t believe me when I say that if you go into hospital treatment is free but when you come out it’s not.

“The point is that if we are to take pride in Scotland then this seems to be a fairly straightforward one. What’s happening can be easily rectified.”

McLeish’s own father Harry died almost nine years ago after being diagnosed with dementia, although he didn’t die of the illness, he says.

He lived alone for a long time in the Fife council house that was the family home after his mother died of cervical cancer, and McLeish describes him as a “lovely man, very generous, bookish, quiet and hard-working”.

“Maybe a decade before he died he was showing signs of impairment and eventually it was confirmed that he had a dementia,” he says. “Mercifully at that point, he still had a lot of his faculties.

“To help him overcome him thinking that he was stupid we had to joke about things.

“It got to the stage he was doing eccentric and nearly dangerous things. I was trying to project in my head that he’s going to get a whole lot worse and what will that mean in terms of accommodation and family.

“I think it’s the fact that with dementia, which is progressive and terminal, you see a loved one in front of you slowly moving away. Something over which you have no control.”

Estimates suggest around 20,000 Scots are living with advanced dementia.

Carers’ groups say being asked to pay for nursing costs comes as a “shock” to many families – weekly care home costs with 24-hour specialist nursing can reach £1,000 and the annual bill in Scotland is thought to total £50 million.

Alzheimer Scotland says the model would be that people with advanced dementia have access to an specialist team including geriatricians, palliative care and nurses, either at home or in residential care.

“It does push us to the bigger issue of demographics and what we do with an ageing population,” says McLeish.

“When free personal was introduced I was got at by Cabinet ministers, the Chancellor of the Exchequer of the time, saying to me, ‘please don’t do this’ because people in England might want it.

“We can afford it. We can find billions and billions for something that is bad for the nation (Brexit). Of course, there’s money but it’s about having the courage and the case to say, we can do this.

“I’m not trying to be clever after leaving politics. It’s easy to say this or that should change.”

McLeish believes “it makes no sense” that care policies for people affected by dementia vary widely across Scotland’s 32 local authorities and health and social care partnerships, but he suggests the public should be prepared to pay for a more streamlined approach.

He says: “The first time someone is getting involved in care, they’ve got to work through this jumble. I’m not saying that every local authority should work the same but there’s massive inequalities in all of that.

“We are talking about 11,000-12,000 people. It would be a useful start to say these are health issues. Let’s not pretend any longer than these are care issues. It’s health, free at the point of need.

“People say for health everybody should pay in and get the benefit but for social care there has to be a different argument, and I’m not quite sure what their argument is based on. It’s all inter-linked.

“We can’t have Nordic-type social healthcare systems without paying for it. They accept that a bigger share of GDP goes to the public sector but they vote for it. We need to make it clear that this is what you get out of it.

“We need more big debate in Scotland.

“For a country that is in good shape, it may be independent, it may be federal, it may be something but the way to get to these is to have a debate free of punishment for speaking out.

“Politicians have got ideas but too often I think, they are not coming through.”