A form of dementia that affects 'working-age' people has seen a five-fold increase in the last six years.   With no current cure for the disease, scientists at NNI are looking at research that would one day give hope to their patients and their families.

Mrs Jenny Lau (not her real name), 60, was high-flying a senior management executive, who managed a department in her organisation.   Five years after she was diagnosed with Alzheimer's at 55 years old, Mrs Lau is a shadow of her former self.

She had experienced memory loss for a few years after her diagnosis but symptoms of her condition started becoming more severe.   In 2012, her behaviour started to change drastically.   She would stare at or scold people around her at the slightest provocation and, on several occasions, almost got involved in public fights.

Today, she cannot recognise her friends and no longer remembers the names of her two sons. Even her husband of 30 years cannot be sure if she remembers his name.

" I miss her tremendously..."
- Mr Lau, husband and caregiver of Mrs Jenny Lau

With Alzheimer's affecting her brain governing memory, cognitive abilities, speech, judgment, reasoning and sense of restraint, she's now unable to tell 'left' from 'right' and does not know her 'A-B-Cs' and '1-2-3s'.

Mr Lau, her main caregiver, now has to watch over her day and night, to prevent repeat episodes of her overdosing on supplements or drinking mouthwash instead of gargling and spitting it out.

Mrs Lau suffers from Young-Onset Dementia (YOD), a condition that typically affects people aged between 45 and 65, although it can also hit people in their early 40s or even late 30s, significantly affecting their lives during their prime, when they are focused on their careers and providing for their families.

For this reason, it is also known as 'working-age' dementia. The most common causes of YOD are Alzheimer's disease and frontotemporal dementia (FTD). Some of the symptoms include difficulty with language, a shrinking vocabulary and changes in behaviour, especially the lack of inhibition in social situations or at work.

Dementia is a condition that is commonly associated with older persons. While it is true that this condition tends to affect those over 70 years old, statistics show that there has been an upward increase in the number of people diagnosed with Young-Onset Dementia (YOD) over the last 2 years.

"We are racing against time to find ways we can slow down the increasing numbers of YOD."
- Dr Adeline Ng, Consultant Neurologist at NNI

At the National Neuroscience Institute (NNI), about 33 per cent or one-third of all new dementia cases diagnosed annually are YOD cases.   In 2016, NNI's Neuroscience Clinic at TTSH Campus saw 179 patients aged below 65, which is approximately a five-fold increase from 2011.

Internationally, there have been very little studies done on YOD. Being a relatively new phenomenon in Asia, it is commonly assumed that most patients with YOD have a genetic predisposition where either a parent or grandparent has been diagnosed with the condition.

Studies have suggested, however, that less than 5 per cent of YOD patients carry a genetic mutation that accounts for this condition.   While FTD has been found to be caused by genetic mutations in Caucasians, the common FTD mutation genes have been found to be extremely rare in Asian patients.  This infers that the cause, both genetic and otherwise, of the majority of YOD cases remains unidentified.

A research team led by Dr Adeline Ng, consultant neurologist at NNI is looking into applying new technologies such as whole genome sequencing (WGS) – the study of an individual's entire genetic sequence - for 160 YOD patients (both Alzheimer's and FTD patients) as well as the collation of data through MRI scans, blood samples and clinical records for genetic and molecular analyses for each patient.

Young-Onset Dementia (YOD) ... can also hit people in their early 40s or even late 30s, significantly affecting their lives during their prime, when they are focused on their careers and providing for their families.

Said Dr Ng, "The social and economic burden of dementia, especially YOD, is tremendous. Due to the younger onset age of the disease, many patients may still be in employment and may have young families.

"With our ageing population and rising incidence of lifestyle diseases, we are racing against time to find ways we can slow down the increasing numbers of YOD.   We hope to detect novel genetic variants and biomarkers that will provide clues to better understand YOD; the causes and how we can better treat patients.

"Our three-year follow-up study will involve not only patients who are Chinese, but also those of Indian and Malay ethnicity, who are rarely studied in other Asian countries especially in the field of dementia. The team estimates that the funding support needed for this research project is close to $1 million dollars."

There is currently no cure for YOD. While an early diagnosis and treatment may slow down the symptoms, they will not halt the progression of disease. Still, Mr Lau hopes that one day, there will be a miracle.

"Ironically, even though my wife is now with me day and night, I miss her tremendously.   The hardest part for me in this journey is the loneliness.   I can no longer share my sadness and happiness with her, and no one else, not even my children, can fill this void," he said.

This article is part of a series that highlights the research and education causes for support in conjunction with the SingHealth Duke-NUS Gala Dinner 2017 that takes place on 3 Sept 2017.