Most people would opt to spend the last years of their lives in their own home if they had the good fortune to remain well enough to do so.

A dementia diagnosis means this is unlikely to be possible.

As the disease progresses, 24-hour care is required, usually in a nursing home and there is no doubt that that – in most cases – the care provided is very good.

However, the advanced stages of the illness can last any number of years, meaning the costs for those who self-fund are going to ratchet up in a relatively short space of time.

The daughter of one man with vascular dementia told The Herald he was paying £1,900 a week for care, on the upper end of costs but by no means exceptional.

The Herald:

The Scottish Government says the new National Care Service will aim to allow people to remain at home for as long as possible, with more care provided in the community. However, there will always be people for whom that is not possible.

Is it fair that because of their diagnosis, people living with dementia must foot the bill for round-the-clock nursing care that would be free if they had another terminal illness?

Alzheimer Scotland does not think so and is leading a campaign – which The Herald supports –- to reclassify social care costs as nursing care, which should then be provided free by the NHS.

As Henry Simmons, Chief Executive of the charity, puts it: “Take a person living with advanced dementia. “Their illness – a direct result of an untreatable brain disease – has progressed to the point where they may require assistance to walk, bathe, toilet and communicate.

“For this person, these are unequivocally health care needs. 

“Why do we still feel that it is acceptable that we ask this person to pay for their care?

The SNP says that people with dementia receive “free” care in the form of personal and nursing contributions but campaigners say £300 a week is not reflective of the cost of that care and does not make much of a dent in fees averaging £1500 a week.

What then is the solution? All the main political parties are supportive of an end to the “dementia tax’”and Labour has said if elected it would use Barnett consequentials  to truly end all non-residential care costs but the Scottish Government has not shown any intent to addressing it.

The campaigning group Care Home Relatives Scotland say the price of living in a care home must also be looked at and have called for a parliamentary working group or citizens’ jury to be set up to look at fees.

As Alzheimer Scotland points out, those who self-fund their care are not all wealthy people but under the current system are paying a very high price for being unable to live out their days at home.

To support the charity's Fair Dementia Care campaign click here