JUNE 19 — Dementia often enters a family quietly. It may begin with a misplaced item, a repeated question, a forgotten name, or a familiar route suddenly becoming unfamiliar.
At first, these changes are frequently dismissed as a normal part of ageing. Only later do families realise that what they are witnessing is not simply forgetfulness, but a condition that gradually affects memory, judgement, behaviour and independence.
This quiet arrival is becoming a growing national concern.
Globally, the number of people living with dementia is projected to increase from 57.4 million in 2019 to more than 150 million by 2050.
Malaysia is not exempt from this demographic reality. The National Health and Morbidity Survey reported that 8.5 per cent of older Malaysians were living with dementia in 2018.
Estimates by the Alzheimer’s Disease Foundation Malaysia suggest that between 204,000 and 264,000 Malaysians were affected in 2020, and these numbers are expected to rise substantially over the coming decades.
Yet dementia is not merely a medical issue to be managed in clinics and hospitals. It is also a family issue, a community issue and increasingly, an educational issue.
How society understands dementia will determine whether those living with the condition are met with patience or fear, support or neglect, dignity or stigma.
Countries facing rapidly ageing populations have recognised that dementia care cannot depend solely on healthcare professionals.
Japan’s Dementia Supporters programme and school-based initiatives in the United Kingdom demonstrate that dementia-friendly societies are built not only through healthcare systems, but also through classrooms, neighbourhoods and everyday human interactions.
These efforts share a common principle: public education should begin before a crisis occurs. It is too late to educate families only when a loved one has already experienced significant cognitive decline.
Likewise, it is too late to nurture empathy after misconceptions and stigma have become deeply rooted.
In Malaysia, research on dementia has expanded considerably. However, much of the attention has focused on patients, caregivers, healthcare workers and university students. One important group has largely been overlooked: school-going adolescents.
At first glance, teenagers may seem unrelated to conversations about dementia. Yet they may be among the most important groups to engage.
Today’s adolescents will become tomorrow’s adult children caring for ageing parents. Some will become doctors, nurses, teachers, policymakers and community leaders.
Even those outside healthcare professions will live and work in a society where dementia becomes increasingly common.
The beliefs they develop today will shape how they respond in the future. If young people grow up believing that dementia is simply “old age”, or something shameful and frightening, these assumptions may persist into adulthood.
However, if they learn early that dementia is a medical condition requiring understanding and support, they may help create a more compassionate society.
With this in mind, our study explored dementia literacy among 916 adolescents from 18 secondary schools across Seberang Perai, Pulau Pinang.
The findings were both encouraging and concerning. On the positive side, more than 70 per cent of respondents had heard about dementia, while 86 per cent correctly recognised that dementia affects the brain.
Many students also understood that healthy lifestyle choices may help reduce dementia risk and acknowledged that there are different types of dementia.
However, important misconceptions remained. Nearly 60 per cent of participants believed that dementia is a normal part of ageing. This misunderstanding has serious implications.
When dementia symptoms are viewed as an inevitable consequence of getting older, families may delay seeking professional help. Opportunities for early diagnosis, planning and support may therefore be missed.
Another worrying finding was that 61 per cent of respondents believed dementia could be transmitted from one person to another. Scientifically, this is incorrect.
Dementia is not contagious. It cannot spread through touch, proximity or shared meals. Socially, however, this misconception matters greatly.
Fear of contagion can lead to avoidance. Avoidance can fuel isolation. Over time, isolation may reinforce stigma against individuals living with dementia and their families.
The study also found that many adolescents expressed discomfort or fear about interacting with someone who has dementia. While this may appear troubling, it does not necessarily indicate a lack of compassion.
Rather, it reflects limited knowledge and exposure. Encouragingly, more than 80 per cent of participants expressed interest in learning more about dementia.
This suggests that adolescents are receptive to education and that their attitudes are still developing.
The classroom therefore represents a valuable opportunity for intervention. Although our study was conducted in northern Malaysia, its implications extend beyond a single region.
As Malaysia moves towards becoming an ageing nation, dementia literacy will become increasingly important.
Healthcare services will continue to play a critical role. Families will remain central to caregiving.
However, neither healthcare systems nor families can shoulder this responsibility alone. Broader social understanding is essential.
Dementia education could be incorporated into existing school subjects such as Health Education and Moral Education.
Community-based projects, intergenerational activities and school awareness programmes may also provide meaningful opportunities for learning.
The objective is not to turn students into healthcare professionals. Rather, it is to raise a generation that recognises dementia early, responds with empathy and supports affected families without judgement.
Malaysia’s future caregivers are already sitting in classrooms today. If we aspire to build a dementia-friendly nation tomorrow, we must begin educating our young people today.
Dementia literacy should not start only when the condition arrives at our doorstep. By then, it may already be too late.
* Dr Ernest Mangantig is a Senior Lecturer in the Department of Community Health, Pusat Kanser Tun Abdullah Ahmad Badawi, Universiti Sains Malaysia.
* This is the personal opinion of the writer or publication and does not necessarily represent the views of NewsPulse.
