Advanced dementia care charges 'unfair' says charity

"This is simply not true," said the charity. "Many people – particularly those with advanced dementia – face care bills of thousands of pounds each week that would be free if they had any other terminal illness."

The government contributes £248.70 a week for personal care and £111.90 a week for nursing care. Care home fees in Scotland for self-funded residents range from £1160 to £1410 per week.

The report reveals a "fragmented, crisis-prone" system that is failing to meet the long-term care needs of people with advanced dementia.

The number of people aged over 65 with the disease in Scotland is predicted to increase by 50% in the next 20 years.

Alzheimer Scotland says people with advanced dementia should not have to pay for healthcare

The report warns that a lack of national and local strategic commissioning and planning has left the residential care home system largely in the hands of the open market. 

As financial pressures build, provision in many areas is now at risk of collapse.

Alzheimer Scotland say the current approach also stifles the development of innovative community-based long-term care models, forcing a one-size-fits-all approach that does not cater to the diverse needs or wishes of people with dementia.

Henry Simmons, Alzheimer Scotland’s Chief Executive, said: “Long-term residential care for people with dementia has been developed largely through an open market approach, with no meaningful local plans or strategy.

"We need an urgent and coherent assessment of local current and future needs, and we need to plan and design services that can meet these needs going forward.

"The reliance that we have on one model of residential care must be challenged.

“Added to this are the inequalities that people with advanced forms of dementia are facing in terms of the inordinate cost of care.

"Even people who are in the terminal stages of advanced dementia are having to pay between £1200 and £2000 per week for care.

"Care which would be free if they had any other form of terminal illness. Care which is health care. It is simply unfair and must be stopped.

“Many thousands of people face this inequality because they are deemed to have a moderate estate, but this should not be the issue. This is never considered in any other part of our healthcare system and we desperately need to bring an end to this inequality and unfairness.

He added: “A fiscal challenge is not a good enough excuse for the Scottish Government to continue to allow this inequity to exist."

Bill Alexander, 74, from Larbert, is a full-time carer for his wife Christine, 72, who has Alzheimer's disease and vascular dementia. 

He said: "We’ve hardly been apart in over 50 years and want to stay together as a couple and get the support we’ll both need.

"The worry for me is a future where the only option is a care home.

"I urge the Scottish Government to listen to the voice, hopes and wishes of people living with dementia and their families.

"Put yourselves in our shoes – would you want only one option for your parents, your family? Would you want this for your own long-term care?"

READ MORE:

• 'Dementia tax' likened to refusing to treat a child with cancer on the NHS
• Scottish care home costs reveal 'postcode lottery' pricing 
• Care home self-funders paying 40% more than state-paid elderly 

Donald Macaskill, Scottish Care’s Chief Executive, said: “This report makes clear that people want to have a wider selection of choice about the care they may need and that they want more voice and control."

Professor Andrew Elder, President of the Royal College of Physicians ofEdinburgh added: "The College has, for some time, been highlighting concerns about the residential care home sector and the pressures it is under as we see care homes continuing to close.

"It is clear that we will also require additional care home capacity for the growing number of older people with dementia who are unable to remain in their own homes."

A spokesman for the Scottish Government said: "The Scottish Government and COSLA jointly published a new Dementia Strategy for Scotland earlier this year which sets out an ambitious 10-year vision for dementia policy reflecting on some of the changes in our population demographics.

"The Scottish Government remains committed to the removal of non-residential social care support charges so that services are based on a person’s need and not their ability to pay.

"We will consider this report’s findings and work with Alzheimer Scotland and our partners to identify new ways that we can support people living with dementia.”

The Herald is backing Alzheimer Scotland's Fair Dementia Care campaign.