By Maryam Moshiri
Business reporter, BBC News
A task such as making a cup of tea is simple enough for most of us, but it's the kind of everyday act that's becoming more and more difficult for 70-year-old Graham Doggett.
Graham suffers from posterial cortical atrophy, the rare form of Alzheimer's disease highlighted by writer Terry Pratchett, who has the same condition.
The number of dementia patients in the UK is predicted to double
Graham, who used to work as a chemistry lecturer at York University, is cared for by his wife Susan. The couple do receive some financial help, but Graham says it wasn't easy to get and isn't enough.
"The little bit we do get is very welcome but we had to fight great battles to get, not care, but finance," says Graham.
And that's what worries the Alzheimer's Society the most. The dementia charity says the current system of paying for care for people with dementia is a "confusing mess".
It warns that many people are unaware of the benefits they are entitled to and the system of means-testing for social care leads to thousands of people struggling to access the care they need.
There are three main types of benefits you can claim if you suffer from dementia:
- Attendance allowance: You have to be over the age of 65, it's not means-tested and you could get up to £67.
- Disability living allowance: You qualify if you are under the age of 65 - it too is not means tested and you could get up to £67.
- Money for carers: For this, you have to be caring for someone with dementia for more than 35 hours a week and you could receive up to just over £50.
According to the current rules, social care means help with tasks such as washing, cooking or using the toilet and is not paid for by the government unless you qualify.
It's not the same as health care, which could involved administering medicine and is paid for by the NHS.
Terry Pratchett has been diagnosed with early-onset Alzheimer's
The Alzheimer's Society calls this an artificial divide and carers such as Susan Doggett believe this is unfair.
"My mother had cancer and was in the hospice for the last six weeks of her life," she says.
"When I think about how wonderfully she was cared for, that is what everybody would want for their end of life care."
The chief executive of the Alzheimer's Society, Neil Hunt, believes the government's attitude to dementia care needs to change.
"We need a system that is more transparent, much easier for people to navigate, so they don't end up getting bounced between health and social services or the benefits system," he says.
Earlier this month, the government announced its National Dementia Strategy, which promises to transform the way dementia is dealt with by the health system.
The Minister for Care Services, Phil Hope, says the government is looking into the problem.
"A person who's got dementia may get both health care and they may still have to pay for social care, because they might have both health needs and social care needs," he says.
"While that's the case at the moment, we are looking at all of this and will be publishing a Social Care Green Paper in the spring of this year."
The direct cost of dementia to the NHS currently stands at more than £3bn a year and the number of sufferers is set to double to 1.4 million over the next 30 years.
Campaigners fear the economic downturn will mean the government will have less money and resources to dedicate to a growing problem.