SCOTS suffering from advanced dementia are facing “one of the greatest hidden health inequalities” because they are forced to pay for specialist nursing care unlike other terminal illnesses such as cancer.

The charity Alzheimer Scotland 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 families facing “disproportionate” charges.

A campaign launched today by The Herald and our sister title the Evening Times backs the charity’s call to the Government to ensure all patients with advanced dementia can access specialist nurses, palliative care and consultant geriatricians at no cost in the final months or years of their lives.

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.

Alzheimer Scotland will launch a new documentary today in Glasgow, as part of its campaign push, which aims to highlight the “unfair” disparity of dementia care costs, featuring former STV anchor Mike Edwards whose mother was diagnosed with vascular dementia in 2015.

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

“The Government’s callous dismissal of the plight of these sick and dying people makes me feel angry and sad that my country has abandoned them, my husband and me, for the sake of money.”

Henry Simmons, chief executive of Alzheimer Scotland, said: “The nature of dementia is that you could be living well for many years and enjoying a good quality of life but your needs will start to change and you will require more support.

“Patients are in a social care assessment situation and have to pay for elements of their care as a result of that, but the problem is there is not a reassessment from when their needs change from social care to almost entirely healthcare.

“If they go into a residential care setting, someone with advanced dementia requires 24-hour nursing care, help to eat, to toilet, to bathe. All of which would be described as NHS healthcare needs.

“However, there is no definition within our current policy for advanced dementia. This person has now progressed and at that point they need healthcare and it should be free.

“The model would be that an advanced specialist team will come in to allow that person to remain where they want to remain be that at home or in a care home which could be specialist geriatricians, palliative care, nursing care.

“This is all readily available but you don’t see that being brought to the person where they are. The cancer specialists we see are clear that the level of support is far better than what they experience in their own personal lives with regard to dementia.

“With dementia there is also loss of capacity, so if you think about it we are still taking thousands of pounds out of their bank account for care which we would argue is healthcare. That’s where the injustice lies. It’s a huge amount of money for some people. These are people who have paid into our system their whole lives, who have built our societies. For us to say, we can’t afford that, it’s unjustifiable.”

Alzheimer Scotland is also campaigning for improvements in the support offered to people with dementia and their families.

The Scottish Government says every person diagnosed with dementia is entitled to a year of post-diagnostic support.

However, according to the charity less than half of those diagnosed are referred because of a shortage of dedicated link workers, who may be mental health nurses, occupational therapists or social workers.

Mr Simmons said: “A link worker costs around £1,500 per year per person. The evidence is that it can delay admission to a care home for two to three years.”

The Scottish Government has said it is considering the findings of a report by the charity, Delivering Fair Dementia Care for People with Advanced Dementia.

The report says residential care-charging policies are confusing and can result in significant costs, particularly for those classed as self-funding.

The charity estimates that 40 per cent of funds are going towards care.

Mr Simmonds said: “The question is not so much how do we pay for this, it’s do we want to pay for it? My problem isn’t to raise taxes and decide how we spend it, my problem is to represent those individuals who don’t have a voice.

“We have a duty to inform the policy makers and the public that this is an injustice and an inequality.

“The response we have had from political parties, there are very few people who have said this is wrong. I’m not saying it can be fixed overnight.

“In the society we want to live in which is a fair and inclusive one, we have a section of our population who will develop advanced dementia and require round-the-clock nursing care and it’s not right that we charge them for the privilege of that when no other condition is treated in that way.

“We’ve seeing some good progress, we’ve got all the models, all the research and it’s not all about massive amounts of money. We are inundated from people from America and Japan all wanting to use our models. Our models are about transforming the system without too much cost. Palliative care specialists exist, geriatricians exist, the skill set exists. What we are saying is that when people reach that point, they should no longer be subject to care charges.

“You might be in a residential care home. You still need to pay for your housing costs but your care, which is defined as healthcare shouldn’t be chargeable.

“That to me is probably one of the greatest, hidden inequalities in our health and social care system because we don’t charge anyone else.”

Alzheimer Scotland is asking all Scotland’s political parties to commit to a manifesto pledge in the next Scottish parliamentary election that patients with advanced dementia patients will be entitled to free medical care. The charity is also aiming to win the public’s backing with 10,000 signatures and we hope to increase this tally to 50,000.

To support the campaign go http://www.alzscot.org/fairdementiacare