By Angus Crawford
BBC News reporter
Andrew was "loving and gregarious"
Not enough is being done to support the growing number of people with Down's syndrome who have dementia, say campaigners.
As many as 50% of all people with Down's in their 50s may now have Alzheimer's disease, as they often get the condition much earlier than others.
But critics say the issue was barely mentioned in a recent green paper on dementia care in England.
However, ministers said action was being taken to reform dementia care.
The Department of Health in England says it wants to make the system "fairer, simpler and more affordable - all of which should help people with Down's syndrome".
There are approximately 40,000 people with Down's syndrome in the UK, and thanks to medical advances they are living longer.
However, they appear to be vulnerable to Alzheimer's disease, because a protein thought to play a key role in the condition called amyloid tends to build up in their brains more quickly than in the rest of the population.
Professor Tony Holland, an expert in the psychiatry of learning disabilities at the University of Cambridge, said the issue had effectively been ignored by the government.
"We would like to see it acknowledged at a governmental level and then clear strategies put in place, which may vary across the country, that ensures they have access to the right services."
Prof Holland said some areas already had very high levels of care - but others lagged behind.
Carers claim it can be a struggle getting the right kind of help.
Nikki Lewis describes her brother Andrew as "warm hearted, loving and gregarious".
Nikki had to fight for care for her brother
He had Down's syndrome, but lived an independent life.
Then, in his 40s, his behaviour changed and his memory began to fail.
"It was very distressing, he hated not being able to find his words, he hated not being able to do all the things he used to do," she said.
Nikki had to fight, first to get an accurate diagnosis, and then for the care Andrew needed. He died aged 52.
Seven years on she says the system has begun to improve.
"I think the levels of care now are becoming much more professional, it's very gradual, some areas are far more progressive than others."
Nikki is convinced the problem is not recognised at government level.
Some good care
Dr Karen Dodd, from the Surrey and Borders NHS trust, said there were examples of excellent care, including a Surrey County Council-run project known as The Cottage.
Doors are painted red to help clients who, because of their illness, lose the ability to distinguish colours.
There are pictures on each door to show what is inside the room, a toilet on one, a television on another, a bubbling pan on the kitchen.
But Dr Dodd said a lack of funding can mean people getting the wrong kind of care.
"You might have someone who is only 40 or 50 going into a nursing home with people in their 80s and 90s," she said.
Care services minister Phil Hope said the green paper set out plans to redesign the care system so that it works better for everyone.
He said: "The green paper is based on making the system fairer, simpler and more affordable for everyone.
"Doing this will benefit people with Down's syndrome as much as any other group."
Mr Hope also said there were plans to improve healthcare for people with learning disabilities, for instance by offering annual health checks through the NHS.