People with Down’s syndrome are at greater risk of developing dementia much earlier than the general population. As they age, their families and carers are now struggling to cope, writes Tim Lawton.
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.
According to Right Diagnosis, approximately 1 in 800 people have Down Syndrome. For the estimated 70,000 people in South Africa with Down’s syndrome, this development is coupled with the startling knowledge that people with Down’s are significantly more at risk of developing dementia than people without Down’s syndrome.
Not only that but they also develop it at a much younger age – 30 to 40 years earlier than the general population.
Charlene is just 29 and was diagnosed with dementia six years ago. Her mum has witnessed her change from a fun-loving, karaoke-singing young person to “an old lady”. Previously unaware of the high prevalence of dementia in people with Down’s, it was a shock for the family to learn that Charlene was developing the disease in her early 20s.
Charlene is unusually young to start developing dementia, but studies do show that the risk increases dramatically with age. By 50, half of people with Down’s are at risk of developing dementia, and this, in turn, is presenting a huge burden to families and services.
Adults with Down syndrome have a high risk of developing dementia.
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.
However, the default care option for many people with Down’s no longer able to remain at home is to be placed in a care home for the elderly. Diana Kerr’s findings warn that this is generally not the best solution. It may be cheaper than specialist dementia care for those with a learning disability, but there is often a lack of understanding among staff about the unique care needs involved.
For Elaine this is something that she worries about daily. She cared for her daughter Mandy until dementia rapidly took hold in her 40s, when the burden on Elaine became too great. She ended up in hospital and Mandy was placed in a local care home.
Elaine visits the care home daily, and pushes to make sure that Mandy receives as much support as she can get. Where she thinks there is a shortfall in the available support, Elaine tries to fill it herself – such as trips to the physiotherapist so Mandy can stand for just a short time every week.
Nationally, there are few facilities that cater specifically for those with Down’s syndrome and dementia. As more and more people develop dementia, experts warn that, due to a lack of resources, more will end up in homes for the elderly, like Mandy.
While families and services provide varied support to people with Down’s syndrome, scientists at Cambridge University are seeking treatments that could prevent future generations getting dementia at all. Professor Tony Holland has recently received funding from the Medical Research Council for a four-year study into a protein called amyloid.
However until a medical breakthrough can defeat dementia, 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 20, 30 years trying to get them out of – long-stay units where they are left in a bed, where they can restrain people with chemicals so they don’t have to tie them down.”
Source: Channel 4 News
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