Millions of people suffering with dementia are often left without care or support until their illness reaches crisis point, according to a report on Thursday on the ethical dilemmas of the brain-wasting disease.
The report by a British medical ethics group criticised health authorities for failing to take a broader view of dementia and called for more focus on easing the daily problems it poses for those who have it, and those who care for them.
Alzheimer's Disease International predicted last week that more than 35 million people around the world will suffer from Alzheimer's disease or other forms of dementia in 2010. That number is expected to almost double every 20 years, to 66 million in 2030 and more than 115 million in 2050.
"Often people can get help with their medical problems, but there is not the same help available to deal with the ethical and moral problems they face," said Tony Hope, chairman of the Nuffield Council on Bioethics' working party on dementia and a professor of medical ethics at Oxford University.
The Nuffield report drew a comparison between cancer care 20 years ago and dementia care now. It said that with rapidly ageing populations, health authorities needed to refocus their approach to recognise dementia's huge impact.
"It is not considered acceptable to make people with cancer wait until crisis point before getting support, and people with dementia should not have to wait either," it said.
SHOULD I LIE? OR LOCK HIM IN?
"It is often the little things that are the most distressing," Rhona Knight, a family doctor and member of the committee, told reporters.
She said carers of dementia patients often needed support in deciding for example whether to lie to loved ones to get them to cooperate with treatment, or whether to lock them in the house or restrict access to appliances or vehicles to keep them safe.
There are few treatments for Alzheimer's, the most common cause of dementia, and other forms such as vascular dementia, which is caused by clogged arteries in the brain.
Drugs can relieve some of the symptoms for a while, but patients lose their memories, their ability to navigate and to understand the world, and to care for themselves.
There is no cure and the costs of illness are forecast to rise dramatically in the coming decades. Experts cite a 2005 study from Sweden's Karolinska Institute that estimated dementia cost global economies $315 billion a year, $227 billion for rich countries and $88 billion for low- and middle-income countries.
The British report said the key to improving care was changing attitudes and ensuring care is there early.
People should have support from the time they start to worry about dementia symptoms, and not have to wait until the illness progressed to a point where only drugs can help, it said.
It pointed to examples of good practice, such as a growing network of "Alzheimer Cafes" spreading from the Netherlands across Britain where people with dementia and their carers can meet and talk to other sufferers and health or social workers.