Campaigners say dementia patients and their carers are being unfairly charged for care.
One woman, who helps care for her husband at home, talks about her fight for help.
Freddie Smith was just 64 when he was diagnosed with a form of dementia brought on by a series of mini-strokes.
"It suddenly became clear," says his wife, Angela.
"For a while he had been asking me what the time was or keeping bags of change in his pocket - he didn't know what they were worth so kept paying with notes."
That was 11 years ago and ever since his condition has been deteriorating, so that now he struggles to move and cannot communicate.
The 49-year-old, from Kent, said she soon found herself asking for help caring for her husband.
But despite his diagnosis, she was told she would have to pay for the help he needed dressing, eating and going to the toilet.
Mrs Smith, who works as an exercise instructor and in a post office, says: "In the end all my wages, about £200 a week, was going on paying for his carers.
"I even had to rely on my mother, who was in her 80s, to help him out, make him drinks and drive him to the day centre.
"What gets me is that this is a medical condition, he was diagnosed, and yet he did not get the help he needed from the NHS. My life was a nightmare."
However, that has now changed. Four years ago, after many years of battling, she finally convinced the NHS to fund Freddie's care.
He now has what is called a continuing care package, which means carers are now funded to look after him at home.
Mrs Smith even gets respite care meaning she can put him in a home while she goes on holiday.
"It has made the world of difference. Like many people, I would not want him to go in a home full-time, but to do that you do need help.
"I am getting that now, but I know I am one of the lucky ones. So many people don't get what I do and I think that is wrong."