This article first appeared in Forum, The Edge Malaysia Weekly on May 27, 2024 - June 2, 2024

We write this column to highlight the importance of building a comprehensive dementia care landscape in Malaysia, and to highlight the fierce urgency to accelerate our efforts. One in 12 Malaysians (or an estimated 330,000 people in 2023) is living with dementia today. With the rapid increase in our older population, the number of people living with dementia (PLwD) will increase exponentially. Without adequate preventive measures and policies, the financial strain on families and healthcare systems will increase correspondingly.

Dementia develops gradually, and often first presents itself with a pre-dementia state called mild cognitive impairment (MCI). In MCI, there is mild memory loss and a decline in other brain functions, but the ability to perform daily tasks is preserved. If MCI is detected, then dementia can be prevented or delayed, but a cure is no longer possible once dementia has developed.

It is worrying that one in four of Malaysians aged above 60 has MCI. To prevent dementia in those who have MCI, three specific areas require special attention: increased awareness of early detection in our community, increased capacity for effective diagnosis and treatment through training of healthcare professionals (HCPs) and healthcare innovations, and a better-developed ecosystem for sustainable healthcare.

Based on a survey, 80% of seniors in Malaysia believe that dementia symptoms are a part of normal ageing (Fact: it is not normal). The cultural stigma and societal stereotypes of dementia have led many, including HCPs, to believe that memory loss is an inevitability of growing old. At present, asking about or testing for memory problems is not conducted during routine clinic visits despite MCI being so common.

Training on dementia and geriatrics is not compulsory in medical schools and the curriculum of other HCPs, including allied health professionals such as pharmacists and nurses. Although many schools do recognise the rising need and have incorporated some teaching on geriatrics, many struggle to deliver enough training because of the lack of expertise. Furthermore, many practising doctors today would not have had exposure to geriatric medicine throughout their training. Hence, few doctors and healthcare practitioners today can conduct a memory test, let alone confidently diagnose MCI or dementia.

Specialist clinics for PLwDs and community support for caregivers do exist in Malaysia. They are, however, limited to large urban centres and work in silos. Those with suspected dementia often struggle to access specialist clinics and investigations. At the same time, those with suspected MCI resort to seeing (limited, busy and overworked) specialists just to access basic memory screening. Hence it is unrealistic for these limited specialists and support services to also accommodate the even larger numbers with MCI in the future, which would only lead to even longer waits for those with full-blown dementia.

Downstream, after the diagnosis is made, PLwD and their care partners often struggle to obtain the psychological, social and financial support they need. Sadly, with the rapid development of innovative treatments today, treatments have not been accessible and affordable to patients who need them quickly enough. Challenges and measures to strengthen the social support system for older adults — under welfare assistance, the Employees Provident Fund (EPF) and the Social Security Organisation (Socso) — deserve a dedicated article and are not considered in this article.

Thailand and Taiwan have made significant strides in redesigning their health systems to sustainably cater for an ageing population. A key aspect of their approach involves investing in human capital, particularly through the education and training of health volunteers and HCPs in geriatric care and dementia. Both countries have also focused on strengthening the financing of healthcare systems to support population-based preventive measures, advanced diagnostics and treatment options, as well as community networks for seniors. In the Netherlands, the national dementia strategies feature effective case management systems. Case managers, usually registered nurses, coordinate and streamline care across different specialties and settings for higher quality of care and efficiency. The prevention and management of dementia is highly complex and lies beyond the hospitals and clinics.

Two areas particularly, namely dementia-friendly environmental design and advance care planning, are not explored in this article. These best practices, whether they are adopted from other countries or co-designed by stakeholders, must be localised and expanded to be useful for the Malaysian context.

The World Health Organization (WHO) had launched a Global Action Plan for Dementia in 2017. In his first term as health minister, Datuk Seri Dr Dzulkefly Ahmad had agreed to and set in motion the development of a National Action Plan for Dementia. After numerous versions, contributed to by many stakeholders, including care partners, the plan will finally be launched, five years later. The exact timing of the launch has yet to be determined. Until the National Action Plan for Dementia is launched, however, relevant stakeholders are currently held in suspense on any strategy, vision and implementation.

Thus, we propose five recommendations to strengthen the landscape of dementia care in Malaysia, in preparation for the much-expected event. As the National Dementia Action Plan will align to the seven action areas of the WHO Global Action Plan, we would like to make the following propositions.

1. Expand dementia education and awareness campaigns

There should be a multi-stakeholder all-of-society approach. In order for existing awareness campaigns to gain traction and impact, such efforts should be supported by all government agencies, not just the Ministry of Health (MoH), and genuine collaborations should occur with non-governmental organisations and civil society organisations.

2. Empower communities to manage modifiable risk factors of dementia

Existing MoH public health campaigns in partnership with patient advocacy groups and the media should be strengthened to motivate people to live and age healthily, such as lifestyle and dietary modifications (for example, smoking cessation, exercise, social activities). Some 40% of dementia risk factors are modifiable, hence by investing in and incentivising positive lifestyle approaches, we can effectively reduce the number of people living with dementia in this country.

3. Offer training opportunities for all health and social care professionals who are likely to encounter an older person

Referral pathways from general practitioners (GPs) to specialists should be strengthened. For instance, MoH can expand training programmes in MCI management and specialised dementia treatment for primary care, geriatric psychiatrists, geriatricians, neurologists and other relevant HCPs. The screening or early detection of memory loss needs to be conducted in the community, involving every HCP — including the pharmacist, who may encounter the older person — and those found with MCI will need to access preventive services which involve nutritional, exercise, cognitive training and social interventions within the community. Consequently, more specialists can provide comprehensive assessments for those referred with suspected dementia, ensuring early diagnosis and treatment initiation of dementia, thus improving prognosis.

4. Coordinate multidisciplinary long-term care plans

There should be no differentiation between health and social care. Designated personnel should be appointed within the community to coordinate healthcare, social care and long-term care which will include personal care, rehabilitation, primary care and specialist care to improve overall access to care from the onset of dementia. The challenge lies in incentivising “case managers” to adopt a coordinated approach as opposed to an episodic approach to caring for PLwDs.

5. Pilot and expand innovative funding mechanisms for dementia

The Ministry of Finance, in partnership with the relevant ministries and private healthcare providers, should introduce innovative funding mechanisms. Examples of innovative funding mechanisms may include bulk purchasing of medicines or equipment, and expanding insurance coverage, subsidies and public-private partnerships to reduce the cost burden of community-based services, dementia treatment and post-diagnostic support on patients and their families. Some private companies have kick-started some initiatives. An example is Japan’s “Dementia Care Support Insurance”, a group insurance co-­developed by an insurance company and pharmaceutical company to support early detection and improve access to MCI and dementia treatment.

Dementia is a complex societal condition that goes far beyond medicines and healthcare, to encompass social, financial and psychological care, for PLwDs and also their family members. Thus, assuming “more money will ultimately solve dementia” is insufficient, and Malaysia must implement a future-proof whole-of-society approach to empower our parents and grandparents.

Esther Chua is consulting manager at Angsana Health. Dr Tan Maw Pin is a professor in geriatric medicine at Universiti Malaya. Kam Ai Teng is managing director of Eisai Malaysia.

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