Living with dementia magazine October 2011

In last month's Living with dementia (page 11) we outlined the recommendations made in Andrew Dilnot's report. These recommendations aim to reform the way adult social care is paid for, making it fairer, simpler and stopping people paying exorbitant costs.

What do you pay now?

Ending the 'Dementia Tax' - where people with dementia and their families are left to pay for all their care costs while other diseases receive NHS funding - has been a long-term priority for Alzheimer's Society. The current system of paying for care is not only unfair but expensive, confusing and unclear.

According to the Society's 2008 report the Dementia Tax:

• 36 per cent pay more than £50 a week for home care
• 50 per cent of care home places cost more than £500 a week
• 51 per cent of people in care homes contribute more than £300 a week for their cost of their care
  

According to the Dilnot Report half of people aged over 65 can expect care costs of up to £20,000. One in 10 can expect costs of over £100,000.

Peggy Belcher, 92, has Alzheimer's and is one of those who has paid more than £100,000 over 12 years for her care. According to her daughter Ann Reid, 65, who has power of attorney over her mother, between £160,000 and £170,000 has been spent during this period. The majority of this has been funded from the sale of Peggy's house and her savings but, according to Ann, this will only last for a few more years.

She says,

'The trouble is that for the people who have state-funded care the cost for them hasn't gone up but that's not the case for people like my mum.

'The system has to change, it is seen as a grossly unfair system and it can't go on like this. If fees continue to go up more people like my mum will run out of money quicker and there will be less of them paying to keep the system going.

'There has to be a cap because you can't bleed people dry. For my mother the money from her house has gone and a lot of what she is using to pay for care now is inherited money from my grandfather - his house was sold when he died.'

How will people with dementia be protected from such high costs?

Such examples sound extreme but the current system of paying for dementia care means that people could face losing up to 90 per cent of their assets. The new system would raise the means test threshold to £100,000 from £23,250. This means more people would be eligible for state support and would have more of their savings protected.

Home care and care home costs would also be capped at £35,000 which would reduce the anxiety and uncertainty in the current system. Additional accommodation costs in residential care would be capped at between £7,000 and £10,000.

What doesn't the report recommend?

Although the report's recommendations offer more protection against extremely high costs, the vast majority of the care that people with dementia receive will still come from social care, which is means-tested, rather than from the NHS, which is free at point of use.

This means people with dementia and their families will still pay for care that people with other conditions, such as cancer, would receive for free. This is a serious concern for people such as Hilary Breakwell. Hilary, 53, cares for her mother Kate who has mixed dementia. She and her mother have struggled to even get an assessment and the only support she currently gets is from Alzheimer's Society and Age Concern.

Hilary is not able to work and although she receives income support and carer's allowance as well as her mother's pension and attendance allowance, they struggle financially.

She says,

'No one seems to understand what they are supposed to be providing. There's no clarity, which is so important so that you know what you are and what you're not entitled to rather than being left in a muddle.'

Ending the dementia tax

Hilary believes the Dilnot report's recommendations to make the funding system simpler and clearer would benefit her and her mother. But she remains concerned that dementia would still not be covered as a health problem.

She says,

'Dementia is an illness but people with dementia aren't considered to have health-based needs. It would make so much difference if dementia was recognised for what it is - a devastating, degenerative and terminal illness.'

The Society is continuing to consider the impact the report's recommendations would have on the lives of people with dementia and their carers. We are now pressing the government to develop concrete proposals for the future funding of social care based around the Dilnot proposals. Please write to your local MP to urge them to support implementation of the Dilnot report's proposals.