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Dementia in those with Down syndrome now twice as likely

A first of its kind report in the world shows that those with an intellectual disability are less likely to suffer from a heart attack

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THE PREVALENCE OF dementia among people with Down syndrome has almost doubled, according to a new study by Trinity College’s School of Nursing and Midwifery.

Dementia has increased from 15.8% to 29.9%, according to the second wave of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (TILDA).

This is a much higher level than those seen in the general population.

Intellectual disability 

Not only has the prevalence almost doubled, but the study, which is the first one in the world to include people with a intellectual disability (ID) into a long term ageing study, shows that the average age of the onset of dementia for people with Down syndrome is 55 years old, with some cases presenting in their 40s.

By comparison, the majority with dementia in the general population are over 65 years of age.

Osteoporosis has also doubled since the first wave of the report three years ago. It has doubled from 8.1% to 16.4% for those with an ID. The study showed that nearly 70% who took part in the health assessment study had poor bone health, which the report states indicates a high level of under diagnosing.

There was also a 50% increase in cataracts.

Other findings show that those with an ID are less like to suffer from other conditions.

Rates of hypertension were more than 50% lower in the ID group (17.5%) than those in the general population (37%).

Heart attack 

People with an ID are also less likely to suffer from a heart attack than those in the general population whose chances are three times higher.

Professor Mary McCarron said the report allows us to understand the ageing process in those with an ID.

“We need housing that is sustainable for their needs, staffing supports as well as a volunteer programme,” she said. She said reorganisation is needed of the current supports, stating that the health issues are a big concern, adding that as a society we haven’t been proactive in our response in how we respond to these issues.

Minister of State, Department of Health and Department of Justice, Equality and Defence Kathleen Lynch said the report told us a lot of things that we did not know and said that it should influence Government policy.

“Yes, we knew that people with ID aged faster than the rest of us, but we didn’t know what the milestones were along the way, but we do now,” she said.

I am that people with an ID will automatically have their blood pressure taken – this study shows us that they should and I am not certain that people with ID all had bone density studies done, this shows us that they should.

Lynch added that dementia issues in the report are “profound”. She said that as a society we can’t allow people with an ID to go into nursing homes in their 40s or 50s. “That would simply be reintroducing the institutional model, but either can we allow them live in splendid isolation in their communities,” she added.

Change of policy 

The minister said the strategy Government will be launching in the next few weeks in relation to dementia may need to be re-examined to ensure that the IDS-TILDA study has a greater impact on the strategy.

What we are going to do for the general population is not necessarily what we should be doing for the population with ID.

Asked whether her department had the resources to implement the changes the report are calling for, Minister Lynch said it is always possible but said that budgets are always stretched.

If I was to get triple the budget I have there would be someone asking me are you sure you don’t need more and I would be saying, yes I do, that’s what happens coming up to budget day every year.
What I am saying is that there are considerable resources, but then again, we have a big population to deal with, the resources are always stretched.

She said the report will enable her to put the limited resources she has into the areas of greatest need.

Read: Student with Down syndrome, Eleanor Murray, celebrates 93% Leaving Cert Applied result>

Opinion: If the HSE doesn’t understand Down Syndrome, how can it care for those with it?>

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