The Upside - Health

People with Down syndrome experience multiple and often complex health issues at a much higher rate than the general population. Advancements in treatment of some of the early issues, such as cardiac problems, are a major reason for the marked improvement in life expectancy of people with Down syndrome in a relatively short time, but there are still many developmental and health issues which have a huge impact of the life of a person with Down syndrome. Down syndrome affects the whole body. We have highlighted a few examples of the health impacts below, but there are many more conditions which are much more common in people with Down syndrome, making them much more likely to feel the impact of systemic problems in our public health service.

 

Did you know?

 

Speech and Language 

Some issues are almost universal among people with Down syndrome. Learning to talk is a particular challenge. Difficulties with understanding and using language present obstacles in daily life.  Delayed language impacts on learning, and the effects are lifelong.

 

Best practice dictates frequent intensive therapy should start in early childhood, with continued access throughout life. Unfortunately, the present situation involves long waiting lists followed by short programmes of treatment.

 

In pre-pandemic Ireland in 2019, the average number of therapy sessions for a person with Down syndrome was five. Not five sessions a week, or five sessions a month or five sessions a term, but five sessions in the year. More than half of the people who responded had been offered no therapy at all.

 

Alzheimer’s disease

 

“We need to make sure that people with Down syndrome are included in the conversation about brain health. There are things we can all do throughout our lives to keep our brains healthy – exercise, keeping our brains active, taking care of our heart – these things are all important.  

 

People with Down syndrome are at a much higher risk of early onset Alzheimer’s than the rest of the population. The risk of developing dementia in people with Down syndrome is 23.4% at age 50, 45% by age 55 and 88% by the age of 65, according to research in Trinity’s Centre for Ageing and Intellectual Disability.

We are hugely supportive of Dr McGlinchey’s latest research project PREVENT dementia – DS, this project is part of a collaborative international study with the Horizon 21 European Down syndrome Consortium, that is working to understand more about what changes happen in the brain before Alzheimer’s disease starts. It is hoped that this will help to prevent dementia.  This research will focus on younger people with Down syndrome in their twenties, thirties and forties.

 

The Lancet Commission (2020) suggests that up to 40% of dementia cases in the general population may be preventable through lifestyle modifications. We must ensure that people with Down syndrome have the same opportunities to engage in positive lifestyle activities such as:

• Physical activity, including regular exercise
• Mental stimulation, with the opportunity to make decisions and choices, learn new skills and access to lifelong learning
• Social inclusion to be part of a local community, with good access to transport, voluntary and paid employment, and local groups, activities

 

Making these healthy lifestyle choices, in particular lifelong learning, are often not an option for adults with Down syndrome or are only available in very limited ways and opportunities decrease as people age. This has to change.

 

Arthritis

For children with Down syndrome, the incidence of arthritis is much higher than for other children. Down syndrome-associated arthritis (DA) is an aggressive, erosive, inflammatory arthritis that affects one in 50 children with Down syndrome. Up until now, there was little information on its unique immunological features, which hindered effective treatment. Thanks to groundbreaking Irish research, we have greater understanding of DA but we need to put systems and resources in place so that children can easily access assessment and treatment for the condition.

 

Sleep

‘Sleep apnoea is much more common in people with Down syndrome of all ages. If not treated, it can lead to heart and lung damage and can affect multiple organ systems. It also contributes to behavioral or psychological problems.’ (McGuire and Chiccoine, 2021)

‘Sleep apnoea is common in Down syndrome, clinical diagnosis is unreliable and universal screening is recommended.’ (Hill et al, 2017)

An estimated 60-70% of children with Down syndrome in Ireland have sleep apnoea, but currently many are undiagnosed and untreated, with long waiting lists for sleep studies. All children with Down syndrome should be screened in early childhood, and again if there are concerns at any point in their life, but currently the resources aren’t there. This is an incredibly common condition which can have huge consequences, but it is treatable. Children with Down syndrome respond to treatment as well as their peers according to research carried out recently in Crumlin. (McDonagh et al, 2021).

 

DSI is actively fundraising for oximetry equipment for initial home screening, but additional HSE resources need to be found for additional respiratory physiologists and equipment.