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People with intellectual disabilities often die earlier

By Kathryn Doyle

NEW YORK (Reuters Health) - People with intellectual disabilities in the UK die of preventable causes more often than the general population, according to a new study. They also tend to die a decade or two earlier.

People with intellectual disabilities have below-average mental function, which could be due to a range of causes, and a lack of necessary skills for daily living, according to the National Institutes of Health. Intellectual disabilities are diagnosed before age 18 and affect up to three percent of people in the U.S.

"We know that a small number of people with intellectual disabilities will have life-limiting genetic conditions that result in them dying sooner than people without those conditions," Pauline Heslop said. She led the study at the Norah Fry Research Centre at the University of Bristol in the UK.

"We also know that people with Down's Syndrome are more likely to develop dementia at a younger age than people in the general population, and thus would die sooner with this condition," Heslop told Reuters Health.

But with good support, most people with intellectual disabilities should live as long as everyone else, she said.

She and her coauthors reviewed data on 247 people with intellectual disabilities who died in southwest England between 2010 and 2012.

Men in the study died at age 65, on average, 13 years earlier than the life expectancy for a man in the UK. Women with intellectual disabilities died at an average age of 63, 20 years earlier than women in general.

In the general population of England and Wales, 13 percent of deaths could feasibly have been prevented with better healthcare. That compares to 37 percent of deaths among people with intellectual disabilities, based on information from their death certificates.

The researchers also reviewed the deaths of 58 people without intellectual disabilities. They compared the circumstances leading to their deaths with information from 58 of the people with intellectual disabilities.

People with intellectual disabilities were more likely to depend on others for feeding or moving around. They were also more likely to live in inappropriate facilities, without access to a bathroom, for example.

Those factors, along with delays in diagnosis and treatment of health problems and difficulty adjusting care as needs changed with age, contributed to earlier deaths, the authors write in The Lancet.

There is no evidence that living in an institution is better than living in the community for people with intellectual disabilities, Heslop said. The important point is the quality of support people received.

"Assumptions were sometimes made by medical professionals that a person living with minimal support in the community might be receiving more support than they actually were, particularly if they were always accompanied to health appointments by a support worker or carer," she said. Doctors might assume that caretakers are always present at home when in fact they are not.

Having a significant friend or partner was also important in the study. People with friends or partners were less likely to die from a preventable cause. That means community connectedness, friends and advocates could play a key role in the health of people with intellectual disabilities, Heslop said.

"What is pointed out here is the need to do more to ensure that the benefits of living in the community are gained by everyone," Philip McCallion said. He is the director of the Center for Excellence in Aging Services at the University at Albany in New York and wrote an editorial accompanying the new study.

"All healthcare professionals need to know more about the unique health needs of people with ID (intellectual disabilities) - it must be part of everyone's healthcare training including information on where and how to access specialist knowledge," McCallion told Reuters Health.

People with intellectual disabilities are more likely to be sedentary and to suffer from certain chronic diseases that require medication, he said.

"We need to think that screening, prevention, health promotion and active management of chronic conditions is as important for people with ID as it is for everyone else and require that this occur," McCallion said.

SOURCE: http://bit.ly/1bLssv2 The Lancet, online December 11, 2013.

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