Lynn Shand's mother, Elizabeth, requires care, "from the moment she gets up to the moment she goes to bed."

The 84-year-old has advanced dementia, the most complex phase of the terminal illness, when most people require 24-hour nursing care.

Her £1050 weekly fees - on the lower end of what many families are asked to pay - are being funded through her husband's savings and the pot is almost depleted. 

However, her daughter is resolute that she will refuse to sell the family home when the money runs out, as she is obliged to under the current rules.

"I would rather take her out of the home than sell her house," said the airport worker, who lives in Aberdeen.

"I won't sell it until she is no longer here - I refuse point blank to do it. That was my mum's worst nightmare - all her money going [on her care]."

She says her mother is now "just existing" in the home and believes it is unfair that she is paying for, predominantly, nursing care that would be free if she had any other terminal illness.

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"Dementia patients are scrutinised for every ounce of their life savings, through no fault of their own," she says.

Alzheimer Scotland say many of those who are forced to sell homes, they might wish to leave to relatives, "are not wealthy people".

Beverley Connolly's father's Jim Smith pays £1900 a week for his care in a home in Edinburgh. His daughter estimates he has paid out around £300,000, so far.

"What he is paying is absolutely horrendous," said Ms Connolly. "It's going up again in October - that's the first time they have had an interim increase. 

READ MORE: Low cost alternative to aged care helping more Scots to stay at home 

"To be perfectly honest, I don't know where it goes because the staff get paid minimum [living] wage - £9.50 an hour.

"Somebody somewhere is making money out of this big time."

The 87-year-old retired council engineer, was diagnosed with vascular dementia ten years ago after suffering a stroke. His daughter says they sold the family home, in part because it was too big for her mother, Ellen, to manage but also because his savings were running out.

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"If you have money you have to pay until that diminishes but if you don't have money then you could end up in the next room to my dad and not paying anything apart from your state pension," she said.

"I think it's very unfair, My dad was a very hard worker, there were times when he had two jobs to pay off his mortgage. My mum worked full time as well."

She said the family didn't expect to get his care "for nothing" but believe that changes are needed to create a fairer system for those who self-fund.

"There doesn't seem to be any sort of regulation around it - care homes can charge what they like," she said.

"I know that things are more expensive like electricity and it's harder for them to recruit and retain staff but they are not paying the staff any more.

READ MORE: Kevin Stewart: SNP's social care plans are 'bold and ambitious'

"From what I've read about the new National Care Service, it doesn't seem like they [the government] want to contribute more, they just want more control over it."

She said the government's failure to address the so-called "dementia tax' could be because people can live longer with the disease than other terminal illnesses and says she would be happy to pay more in taxes for her own care in the future.

"If everyone pays what they can, I think that's fair," she said.

She acknowledged that the care her father is getting is good.

"He's happy, he's settled, he's involved in activities. He's non-verbal now - over lockdown he lost the power to speak. But he smiles and he knows that he knows us," she said.

A report published recently found that privately run care homes fare worse on value for money, treatment of staff and quality of care compared to the non-profit sector.

Analysis of data from the Care Inspectorate, Scottish Social Services Council and Labour Force Survey also found that providers exhibited a “concerning level of market power”.

The STUC (Scottish Trades Union Congress)  which carried out the analysis, is calling for the Scottish care home estate to be transferred out of private ownership in totality.

The UK government plans to introduce a new £86,000 cap on the amount anyone in England will need to spend on their personal care over a lifetime. However, the Tories were criticised for an amendment which means council contributions will not count towards the cap, meaning it will be of less benefit for poorer families.

Health Secretary Humza Yousaf said Scotland's new National Care Service will end the 'postcode lottery of care' but the bill does not suggest a cap or a rise in taxes and efforts will be focussed on helping people live at home for as long as possible.

Cathie Russell, of the campaign group Care Home Relatives Scotland, says the Scottish Government's assertion that it provides 'free personal and nursing care" is not reflective of the true cost. This year's contribution is around £300 a week.

She said: "Most people are perfectly willing to contribute but people are getting hit with fee rises twice a year now - as much as an extra £200 a week.

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"The least the government could do is buy all the places and recharge those who have to pay. It’s really not right that your relative is charged £90,000 a year for a place the council pays just £42,000 for and for exactly the same service.

"I wouldn’t want a young person heavily taxed to protect other people’s inheritance but I do feel strongly that the current system is a racket and is completely punitive on people who have taken a lot of care with their money.

"I would prefer to see inheritance tax revisited to even things out," she added.

"Folk that never give their old relatives a kind look inherit more than £325,000 without a penny tax to pay (in fact it can be £500,000 if it’s a house that’s left to them) and get to keep 60% of everything over that but folk who have been caring for parents for years and are totally attentive lose everything when their parents are so poorly they go into care."

Scottish Care say there is an argument that a failure by councils to pay adequate fees has led to self-funders effectively subsidising the shortfall from the state. 

A spokewoman added: "Others have pointed to the disparity between what it costs a local authority or the NHS to run their care homes (a rough average of £1,300 a week) and what they pay independent (private or charitable) care homes at just under £800 a week.

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"The true value of care homes should be recognised, they now carry out the role of former cottage hospitals, delivering complex and support to people with a range of advanced conditions for a third of the cost of a hospital." 

Unless a care home chooses to be completely private, they sign up to the National Care Home Contract, which sets fees and is negotiated each year between Scottish Care, COSLA, Scotland Excel and local councils.

"Out of those only Scottish Care has an interest in what is best for care home residents, the rest are only interested in how much money they can have for themselves," says Brian Murray, who owns Abbey Court care home in Glasgow.

"Yes, there are privately owned care homes run by companies only interested in profit but its not all of them and its not the majority and I believe it's the job of the care inspectorate and the government to weed them out."

READ MORE: 'If we get it right good, aged care may not cost as much as we think'

Professor June Andrews, a former nurse who writes extensively about aged care, says most people under-estimate how much it costs to run a care home.

She said: "A Premier Inn in Edinburgh Leith was offering an ensuite room with breakfast for £150 per night.  

"A care home [might charge £250 a night.  So what extra do you get for £100?  Three meals, and full personal care including help with your personal care, medical supervision, entertainment and peace of mind for your relatives, 24 hour personal support - £100 is maybe not a lot for that.  

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"Especially as no one minds if you are incontinent and cause a domestic crisis from that, or if you are difficult with staff.  Someone looks after you if you are upset, the staff tell your family how you are doing - that doesn’t happen in a Premier Inn.  

"And the price doesn’t go up during the Edinburgh Festival or at Christmas and New Year."

Lynda Robertson's mother Leah Arthur has been in a care home in Edinburgh since last year and is paying around £1000 a week.

The family would like to move her back to her own home because they believe the nursing home environment has been "detrimental to her dementia progression" and have been quoted £1295 a week for 24-hour care, more than she currently pays.

She said: "This will of course still mean her house will have to fund it. 

"The house they bought when I was 14 and explained to me [it was to] provide financial security for myself and my sister and any family we might have'.

"My parents sacrificed and worked hard in this belief only for it all to be taken away."

Like many families, they have found, navigating the care system difficult and stressful.

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Lynda's sister, Jennifer Dick said: "It's such a minefield from the beginning, trying to get straight answers. 

"Even now, trying to find out will mum will actually get from the council...

"I know some people sign their house off to their children.

"It's devastating for mum and dad that they worked all their days, paid their taxes. Maybe it's something we should have been more aware of."

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