The many challenges of dementia care in Malaysia

SEPTEMBER is World Alzheimer’s Month. The theme for this year, “Never too early, never too late”, emphasises risk reduction actions to prevent dementia as well as to delay its progress.

Dementia is a medical condition where damage to brain cells leads to memory loss, thinking impairments and behavioural changes. The two common types of dementia are Alzheimer’s disease and vascular dementia.

People living with dementia find it difficult to remember things, think clearly, recognise familiar people and places, and perform basic daily tasks.

Dementia often starts with mild changes but worsens over time to a point where a person can no longer communicate, walk, or control bowel movements.

It is important to understand that dementia is not part of normal ageing. Rather, it is the result of underlying disease processes that affect the brain's ability to work properly.

The World Health Organisation (WHO) has declared dementia a global public health priority due to the rapidly ageing populations worldwide. The number of people living with dementia worldwide is expected to increase to 139 million in 2050 from the 55 million recorded in 2019.

According to Alzheimer’s Disease International (ADI), around 123,000 Malaysians were estimated to be living with dementia in 2015. This figure is expected to increase to 261,000 by 2030 and 590,000 by 2050.

The world has made remarkable strides in the diagnosis and treatment of dementia. Yet, in Malaysia, we are still far from having the healthcare system capable of delivering affordable care to people living with dementia.

There is a severe lack of medical specialists who are trained to treat older adults. There are only 60 geriatricians in the country, and most of these experts are working in urban areas, predominantly in Kuala Lumpur and Selangor. Hence, patients have to wait for a long time to get an appointment, subsequently delaying early diagnosis and care planning for them.

A serious shortage of hospital beds for the geriatric population also forces rejection or premature discharge of older adults with dementia and other non-communicable diseases. Sending them home early without timely specialist intervention often worsens their condition and may cause a cycle of health deterioration and hospital re-admissions.

There is also a lack of care homes with dementia-focused services. Currently, out of 173 government elderly care facilities, only two (Rumah Ehsan) cater to dependent older adults without caregivers and who require assisted living. Though NGOs and private sector concerns have increased the number of care homes around the country, other issues persist, such as the lack of regulation, high cost, and uneven geographical distribution.

Ahead of Budget 2024, higher healthcare spending is urged, ideally in the range of between 5% and 7% of the total gross domestic product (GDP) as recommended by WHO.

We also urge the government to invest more in training and incentives for geriatric medicine. Increased funding should provide scholarships to pursue geriatric specialisation and promote career growth.

Building the capacity of healthcare professionals in primary care settings is crucial too. This should be done through the provision of ongoing training so that timely diagnoses and referrals can be made.

Augmenting geriatric and gerontology content in all medical school curricula will also build a workforce empowered to serve our rapidly ageing population in the near future.

Family caregivers are the main pillar of care delivery, providing round-the-clock support to the person living with dementia. But the constant demands of the patient, coupled with lack of professional knowledge and care-related training, can lead to mental and emotional burnout for the caregiver.

Lack of public understanding about dementia may also lead to the stigmatisation of patients, further isolating the caregivers.

Providing training and support to improve the caregivers’ skills and self-efficacy, as well as public education to increase awareness and compassion for people living with dementia and their families, will reduce caregiver exhaustion, overcome stigma, and enable those impacted by dementia to receive the diligent care and community acceptance they deserve.

We hope the implementation of the Health White Paper will allow our nation to be better equipped for current and future dementia care needs.

LOH KEN JOEY

PROF DR ALVIN NG LAI OON

PROF DR ELIL RENGANATHAN

and PROF DATIN DR CHIA YOOK CHIN

School of Medical and Life Sciences,

Sunway University

DR LEE WAN LING

Faculty of Medicine,

Universiti Malaya

ASSOC PROF DR DEVI MOHAN

Jeffrey Cheah School of Medicine and Health Sciences

Monash University Malaysia