Down’s syndrome and dementia related

People with Down’s syndrome are at greater risk of developing dementia much earlier than the general population.

Reports suggest people with Down’s syndrome are living longer than ever before. Since the 1980s, their life-expectancy has doubled and many now live into their 60s.

Along with the 60,000 people with Down’s syndrome in the UK, this development is coupled with the startling knowledge that people with Down’s are significantly more at risk of developing dementia. They also tend to develop it at a much younger age, 30 to 40 years earlier than the general population.

By 50, half of people with the syndrome are at risk of developing dementia, and this presents a “huge burden” to families and services, the report suggests.

Down’s syndrome is caused by the presence of an extra chromosome in a baby’s cells. It occurs by chance at conception and is irreversible.

Diana Kerr, a leading expert in the dual diagnosis at University of Edinburgh, worries local authorities are not ready to meet the increasing demands of the increase of Down’s syndrome population – partly because of a false perception that people with the syndrome do not live long enough.

Often changes in personality are the first sign of dementia, and a diagnosis is crucial for accessing the right services. It also means the family or carers can begin to change their responses and environment to make life more manageable for the person with Down’s.

But Ms Kerr insists many options for carers are not costly and that simply training families and staff “who are supporting people with dementia to get into their world, instead of expecting them to get into our world”, could greatly improve the situation.

However, the default care option for many people with Down’s syndrome no longer able to remain at home is to be placed in a care home for the elderly.

Ms Kerr’s findings warn this is generally not the best solution as, while it may be cheaper than specialist dementia care for those with a learning disability, there is often a lack of understanding among staff about the unique care needs involved.

Professor Tony Holland recently received funding from the Medical Research Council in the UK for a four-year study into a protein called amyloid.

People with Down’s syndrome have unusually high levels of amyloid in the brain, and Professor Holland wants to find out if this is the driving force behind dementia in those with Down’s syndrome.

If the study concludes the protein is the key factor, the next step will be to find treatments that reduce the amount of amyloid being deposited in the brain, and thus attempting to prevent the onset of dementia in the Down’s syndrome population.

However until a medical breakthrough can defeat dementia, Mr Kerr fears recent improvements in quality of life for people with Down’s could quickly regress.

“If we do not do something about the needs of people with Down’s as they get older and have developed dementia, they will go back into the institutions that we have spent the last 30 or so years trying to get them out of,” she said.

UK Down’s syndrome facts

• About one in every 1,000 babies born in the UK will have Down’s syndrome.
• There are 60,000 people in the UK with the condition.
• Although the chance of a baby having Down’s syndrome is higher for older mothers, more babies with Down’s syndrome are born to younger women.
• Down’s syndrome is not a disease. People with Down’s syndrome are not ill and do not “suffer” from the condition.
• People with the syndrome will have a degree of learning difficulty. However, most people with Down’s syndrome will walk and talk and many will read and write, go to ordinary schools and lead fulfilling, semi-independent lives.
• Today the average life-expectancy for a person with Down’s syndrome is between 50 and 60. A considerable number of people with Down’s syndrome live into their 60s.