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Thanks to advancements in healthcare, people with Down syndrome are living longer, healthier lives. Since the 1940s, life expectancy for people with this chromosomal condition has increased fivefold from just 12 to 60 years; and today, babies born with Down syndrome may live up to 80.
However, affecting half of those who reach their sixties, people with Down syndrome are much more likely to develop dementia than the general population – only 2 per cent of whom acquire it by the same age. With the amyloid proteins involved in dementia sitting on chromosome 21 (the third copy of which is responsible for Down syndrome), there is a strong genetic basis for this link.
Dangers of diagnostic overshadowing
Despite its extreme prevalence, Darryl Steff, Chief Executive of Down Syndrome Australia, says early dementia symptoms often get missed in people with Down syndrome, due to a phenomenon known as diagnostic overshadowing.
“Essentially, sometimes people are so fixated on the person’s diagnosis of Down syndrome that they tend to believe it’s the cause of any cognitive and behavioural abnormalities. As a result, they fail to consider the possibility of any emerging or comorbid conditions, like dementia,” he said ahead of the 15th Annual National Dementia Conference.
Diagnostic overshadowing can impact anyone, including GPs – many of whom do not have expertise in Down syndrome. When this happens, people don’t get the health and social support they need.
“Often the first signs of dementia are subtle – personality changes, difficulty paying attention, and challenges with social interaction. A lot of people – including GPs – consider this to be a part of Down syndrome, so it can be hard to get that secondary diagnosis, along with the requisite support,” Mr Steff said.
While families and carers are often better placed to detect these changes, some also fall prey to diagnostic overshadowing and dismiss any suspicions they might have. This poses a further challenge for GPs, who do not know whether their patient has deteriorated, or is demonstrating longer-standing traits.
“There is certainly overlap between some of the behavioural manifestations of dementia and Down syndrome – but generally, dementia involves a decline in cognition and is diagnosed on that basis.”
“When you aren’t sure if attentional problems, for example, have always been there, or if they are an emerging issue, there is an extra layer of difficulty in diagnosing that individual.”
Recommendations for improving diagnostics
The Department of Health and Aged Care (DOHA) recognises the prevalence and challenges around dementia in people with Down syndrome, and offers a comprehensive health assessment process (CHAP) on its website.
This evidence-based tool helps identify unmet health needs and monitors comorbid conditions in adults with intellectual disability.
Despite this resource being made freely available on DOHA’S website, the CHAP is not as well known as it should be.
Mr Steff believes improving awareness is key, and highlights developments in the UK, where management of these comorbidities is more advanced.
“It took the UK several years to see satisfactory levels of take up after they introduced a similar health assessment process. Part of that was due to increased awareness and also making the test free,” he said.
“I applaud the Department of Health’s plans to promote the CHAP more extensively over the next six months and believe this should be targeted at both health professionals and general citizens.”
Recommendations for improving support
Alongside efforts to improve diagnostics, Mr Steff says a fresh look is needed at the support available to people with this dementia and Down syndrome. With early onset a likely outcome with this comorbidity, Mr Steff says it is a shame many of those diagnosed can often only access support via the aged care system.
“It’s a really unfortunate outcome when younger people with Down syndrome and dementia are funnelled into aged care. They need better places to access people with skills and expertise in caring for them appropriately.
“Ideally, we need support workers and carers trained in caring for people with dementia outside of aged care, and more appropriate places for this to take place.”
Recommendations for improving management
While it is clear some major reforms are needed, Mr Steff believes simple interventions can go a long way. He says advice around diet and lifestyle can make a meaningful impact on the prevention and management of dementia.
“This is no different to what would be recommended to a person without a disability. Maintaining good general health, an active lifestyle and balanced diet can be really beneficial in keeping dementia symptoms at bay.”
Sharing more expert advice, Darryl Steff’s colleague Dr Rebecca Kelly, Chair Down Syndrome Australia, is due to present at the upcoming 15th Annual National Dementia Conference.
This year’s event will be held 12-13 June 2024 at the Crown Promenade Melbourne.
About Darryl Steff
Darryl has been the CEO of Down Syndrome Australia since January 2023. Prior to that he was CEO of Down Syndrome Queensland, where he led the organisation for over seven years, successfully advocating for the needs of people with Down syndrome.
Darryl has more than twenty years’experience in commercial and financial management, governance, process improvement and the leadership and management of teams.
This, and his experience of parenting a child with Down syndrome, provides Darryl with a unique insight and perspective, enabling him to advocate for change for people with intellectual disabilities.
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