Living with Both Down Syndrome and Dementia

Down Syndrome is a genetic condition that affects people’s learning abilities and causes some unique physical characteristics.

Back in the 1980’s, the average life expectancy for someone with the condition was only 25 years old. However, with the advancements in science and medicine, many people with Down syndrome now comfortably live until the age of the 60.

Living longer

This advancement in age, however, is somewhat of a bittersweet victory. People with Down syndrome are typically more prone to brain changes as they get older, resulting in an increase in those with Down syndrome developing dementia at an earlier age compared to people without the condition.

With the life expectancy back in the 20th century being so low for those with Down syndrome, many people did not tend to live long enough for signs of dementia to emerge.

But now, in the 21st century, the rise in people with Down syndrome being diagnosed with dementia is becoming and increasing problem; a problem not often addressed when it comes to providing dementia care.

An increasing number

According to Young Dementia UK, one in 50 people with Down syndrome will develop Alzheimer’s disease between the ages of 30 to 39.

This number increases to one in 10 for people between the ages of 40 and 49, and then up to one in three people for people in their 50’s.

In addition, according to Alzheimer’s Society, one in 10 people with a learning disability will develop dementia, compared to one in 14 of the wider population.

Diagnosis difficulties

Yet despite the ever-increasing number of people with Down syndrome developing dementia, many are left undiagnosed.

Phil Freeman of the Dementia Action Alliance states that the low rate of diagnosis is due to a combination of signs of dementia displaying differently in those with Down syndrome, plus the fact that many signs may just be treated as another condition of Down syndrome, rather than dementia:

“Symptoms may be mistaken for a pre-existing disability and therefore they are less likely to receive a timely diagnosis. Ultimately this means more avoidable deaths when poor judgements are made about quality of life and treatments,” he said.

“Skilled organisations need to be able to spot early warning signs in already challenging circumstances.”

Providing dementia care

Even if dementia is correctly diagnosed, organising dementia care for someone with Down syndrome and dementia can be a difficult task.

Firstly, someone with Down syndrome may not fully understand what being diagnosed with dementia may mean for them.

There is also the issue that many care facilities, such as dementia day centres providing dementia day care, may not being able to provide the specialised support needed for someone with both Down syndrome and dementia.

Additionally, there is evidence that some forms of therapy, particularly non-drug treatments, do not have the same effect on those with Down syndrome, making treating dementia even more of a difficult task.

Mr Freeman says these combined issues leave a substantial number of the population with insufficient care, and that more needs to be done to rectify the problem:

“They fall through the gaps and don’t get the support they need – we must rectify this,” he said.


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