Doctors accused of discriminating against Down's syndrome patients
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《英国医生杂志》
The Down抯 Syndrome Association this week accused doctors of discriminating against people with Down抯 syndrome who have developed dementia by either delaying or not offering access to the full range of social and medical treatments available to them.
The association, which is the United Kingdom抯 main charity that champions the rights of people with the syndrome, states that lack of understanding means that many doctors overlook the possibility of dementia in middle aged people with the syndrome. Instead, doctors tend to attribute the distressing symptoms of dementia to learning difficulties that all people with Down抯 syndrome have to some degree. This inevitably leads to delays in the diagnosis of dementia and suboptimal medical and social care, says the association.
Currently, 60 000 people in the United Kingdom have Down抯 syndrome; two babies are born every day with the condition. People with the syndrome are among the most at risk of getting Alzheimer抯 disease at a relatively young age, often developing dementia 30 or 40 years before the general population. For example, about 40-50% of 50 year old people with Down抯 syndrome have clinical features of dementia, an equivalent incidence to 90 year olds in the general population, according to statistics provided by Professor Tony Holland, health foundation chair in learning disabilities in the department of psychiatry, University of Cambridge. People in their 30s with the syndrome have about a 2% incidence of dementia, which is comparable to that of 70 year olds in the general population.
The association between Alzheimer抯 disease and Down抯 syndrome may be linked to chromosome 21, the chromosome that people with Down抯 syndrome have an extra copy of. A gene present on this chromosome has been related to Alzheimer抯 disease, although it is not inevitable that all people with Down抯 syndrome will develop dementia, according to the association.
The main medical treatment that the association feels people with Down抯 syndrome and dementia are discriminated against receiving is the cholinesterase inhibitor donepezil (Aricept) which is approved by the National Institute for Clinical Excellence for those with Alzheimer抯 dementia. The institute抯 guidelines, however, exclude those with coexistence of a learning disability, effectively anyone with Down抯 syndrome.
The association says that some general practitioners are citing these guidelines as a reason for refusing to prescribe donepezil. New guidelines are due to be published in 2006 and are expected to improve provision for people with Down抯 syndrome.
The new guidelines will also take into account recent research which casts doubt on the actual effectiveness of the drug itself for those with Alzheimer抯 dementia in the general population (3 July, p 9). No large trials have investigated the effectiveness of donepezil in people with Down抯 syndrome and dementia.
Professor Tony Holland, who has developed a new diagnostic tool to help try and pick up dementia in people with Down抯 syndrome, said, 揇iagnosis is increasingly important to ensure that people with Down抯 syndrome have access to the full range of treatments without concern that they will be discriminated against.?(London Debashis Singh)
The association, which is the United Kingdom抯 main charity that champions the rights of people with the syndrome, states that lack of understanding means that many doctors overlook the possibility of dementia in middle aged people with the syndrome. Instead, doctors tend to attribute the distressing symptoms of dementia to learning difficulties that all people with Down抯 syndrome have to some degree. This inevitably leads to delays in the diagnosis of dementia and suboptimal medical and social care, says the association.
Currently, 60 000 people in the United Kingdom have Down抯 syndrome; two babies are born every day with the condition. People with the syndrome are among the most at risk of getting Alzheimer抯 disease at a relatively young age, often developing dementia 30 or 40 years before the general population. For example, about 40-50% of 50 year old people with Down抯 syndrome have clinical features of dementia, an equivalent incidence to 90 year olds in the general population, according to statistics provided by Professor Tony Holland, health foundation chair in learning disabilities in the department of psychiatry, University of Cambridge. People in their 30s with the syndrome have about a 2% incidence of dementia, which is comparable to that of 70 year olds in the general population.
The association between Alzheimer抯 disease and Down抯 syndrome may be linked to chromosome 21, the chromosome that people with Down抯 syndrome have an extra copy of. A gene present on this chromosome has been related to Alzheimer抯 disease, although it is not inevitable that all people with Down抯 syndrome will develop dementia, according to the association.
The main medical treatment that the association feels people with Down抯 syndrome and dementia are discriminated against receiving is the cholinesterase inhibitor donepezil (Aricept) which is approved by the National Institute for Clinical Excellence for those with Alzheimer抯 dementia. The institute抯 guidelines, however, exclude those with coexistence of a learning disability, effectively anyone with Down抯 syndrome.
The association says that some general practitioners are citing these guidelines as a reason for refusing to prescribe donepezil. New guidelines are due to be published in 2006 and are expected to improve provision for people with Down抯 syndrome.
The new guidelines will also take into account recent research which casts doubt on the actual effectiveness of the drug itself for those with Alzheimer抯 dementia in the general population (3 July, p 9). No large trials have investigated the effectiveness of donepezil in people with Down抯 syndrome and dementia.
Professor Tony Holland, who has developed a new diagnostic tool to help try and pick up dementia in people with Down抯 syndrome, said, 揇iagnosis is increasingly important to ensure that people with Down抯 syndrome have access to the full range of treatments without concern that they will be discriminated against.?(London Debashis Singh)