Growing number of those with both Down syndrome and dementia, who struggle with diagnosis and care
Published on
25 Sep 2023
Published by
The Straits Times
SINGAPORE – Mr John Koh, 44, used to get all his things ready the night before work the next day. He would take public transport and buy his meals on his own.
But he is now “almost like a totally different person”, said his mother, Madam Cheng Chiang Luang, 70.
He has since quit his cleaning job, and loses his temper if woken up by his parents when he does not want to.
He forgets his keys and home address, and is no longer as interested in drawing and football as he used to be.
Mr Koh, who has Down syndrome, began showing these changes in behaviour in 2020.
He is among a growing group of people here with Down syndrome who are also facing the trials of early onset dementia.
Early onset dementia refers to any form of dementia that develops in people under age 65. Symptoms of dementia include mood swings, behaviour and personality changes, and memory loss.
About one in 700 to 800 babies is born with Down syndrome, according to international estimates.
Recent studies have also shown that by age 60, 50 per cent to 80 per cent of them develop dementia, said Dr Chen Shiling, who runs IDHealth, a clinic for adults with intellectual disabilities and their families.
This is much higher than the rate for the general population, which is about 10 per cent in those above the age of 60.
She suggested that this could be because individuals with Down syndrome have an extra copy of chromosome 21, which could lead to increased production of the amyloid protein, which is linked to brain changes that those with Alzheimer’s disease, a type of dementia, experience.
What is more worrying is that for those with Down syndrome, they develop it even earlier – in their 40s and 50s, said Dr Chen, who also runs a dementia clinic once a week at Khoo Teck Puat Hospital.
With life expectancy increasing for all Singaporeans, those with Down syndrome also live longer now than they did before.
Previously, their life expectancy was in the 20s, but this has gone up to the 60s, which means more of them develop dementia.
The current system for assessment, diagnosis, treatment and disease management has not kept up with the increase in such cases, she noted.
In terms of diagnosis, a person with Down syndrome will first show symptoms of dementia through behavioural changes. This is different from a regular person, who will usually show signs of forgetfulness first.
In evaluating the person, someone with Down syndrome will have difficulties in participating in assessment tools that the doctor uses.
When managing the symptoms, doctors typically prescribe medication, physical and cognitive exercises, and recommendations on how to build a more suitable environment.
But for someone with Down syndrome, the effects of medication on this group have not been as widely researched, and the usual exercises might be difficult to carry out, said Dr Chen.
Their caregivers also struggle, as caregiver parents would be older and not that fit or agile, she added.
Madam Cheng said that when Mr Koh first started showing changes in his behaviour, she had no idea it was dementia, as she thought it was just deterioration in his condition due to Down syndrome.
“I never thought he would change to this extent. As his kin, I feel like I have to love and care for him, but as his caregiver, I sometimes feel very helpless, unhappy and disappointed,” she said.
“I’m grateful to have met Dr Chen and her team, so I don’t feel so lonely, especially since I don’t know anyone else around me with dementia.”
Dr Chen said her team at the clinic plans to develop a clinical service that will assess people with intellectual disability – including those with Down syndrome – for dementia as accurately as possible, and that is suited to a local setting.
Individuals with intellectual disability who develop dementia also face many of the same challenges mentioned above. But the prevalence rate of dementia in this group is similar to that for the general population.
IDHealth social worker Low Soo Wen visits Mr Koh and his family at their Ang Mo Kio home about once a fortnight to help with cognitive stimulation and to advise how to improve the environment.
“We troubleshoot ways to help John complete simple tasks, such as going to the toilet,” she said.
“Getting to know John as a person before dementia was very important – like he used to be a cleaner, so we tried putting a sign for the toilet (as it is familiar to him).”
She said one of the biggest challenges is in supporting the caregivers, who can be emotionally and physically exhausted.
“We need a more robust system for caregiver and patient support, to anticipate the stressors and care needs,” she said.
Dr Chen added that with September being World Alzheimer’s Month, she hoped more awareness would be raised about this group not just among the public, but also across the healthcare and social sectors as they come across such individuals.
The team at IDHealth is also working with Dementia Singapore, which currently sends befrienders to the homes of Dr Chen’s patients, such as Mr Koh.
They build rapport with the individuals and try out activities to keep them engaged.
Dementia Singapore chief executive Jason Foo said his social service agency recognises that other organisations have improved “mainstream” care for dementia, so it hopes to address emerging needs and gaps.
“This group will not be able to fit into the existing day care centres and programmes for dementia, which are largely catered to the elderly,” he added.
The agency is researching overseas practices and trying out different methods, such as the befrienders that are currently deployed.
For Mr Koh’s parents, they hope other parents of those with Down syndrome and dementia have an easier time coping in the future – from diagnosis to assessment and to long-term care.
“I hope there will be more help for clinics like IDHealth and more support for patients and caregivers, so we don’t feel so lonely and helpless,” said Madam Cheng.
“While we still have the ability and strength, we can care for John. But if I leave before him, I don’t know what will happen.”
Source: The Straits Times © SPH Media Limited. Reproduced with permission.
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