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Dementia cases set to rise 312 per cent by 2050: Is Malaysia prepared? 

KUALA LUMPUR: The number of older adults suffering from dementia, an incurable chronic degenerative condition, in Malaysia is expected to nearly triple over the next 30 years.

According to the Alzheimer's Disease Foundation, Malaysia (ADFM) in 2020, the population of persons living with dementia that, in its end-stage, leaves them dependent on 24-hour care, is estimated to be at 204,000 to 264,000 (8.5 per cent to 11 per cent). 

This number is projected to treble to 637,500 to 825,000 by the year 2050, an increase of 312 per cent, a prediction largely based on data which shows that Malaysia is fast becoming an ageing nation

Besides that, lifestyle and environmental risk factors also contribute to exponential growth in numbers of dementia cases, the foundation said. 

"In 2020, the total elderly population in Malaysia is estimated at 2.4 million or 7.5 per cent of the total population of 32 million. It is projected to grow to 14 per cent by 2050, with elderly aged 65 years and above estimated to reach 7.5 million. 

"In 2018, it was published in the National Health and Mobility Survey that 8.5 per cent of the older adults in Malaysia could suffer from dementia (of which Alzheimer's disease will account for 60 per cent to 70 per cent of the dementia cases). 

"We believe that the person living with dementia in Malaysia will be as high as 11 per cent of the older adults in the country.

"This is due to society's lack of awareness of the disease; the lay public misinterpretation of memory loss as a normal sign of ageing; stigma attached to being diagnosed; and with many not diagnosed or misdiagnosed," ADFM told the New Straits Times (NST).

ADFM, a non-profit organisation founded in 1997, and member of Alzheimer's Disease International, UK (ADI), said this following release of the new global report on stalled progress of World Health Organisation (WHO) Member States in developing national plans to tackle dementia. 

The report, 'From Plan to Impact V: WHO Global Action Plan: The time to act is now', published by ADI, the global federation for 105 Alzheimer's and dementia associations worldwide, in May 2022 was released at the World Health Assembly in Geneva recently.

Dementia leads to deterioration in memory, impairs thinking and comprehension, changes behaviour and affects a person's ability to perform everyday activities. This deterioration of function has led dementia to be one of the major causes of disability among the elderly, ADFM said.

The foundation also said the physical, psychological and economic impact caused by dementia is further compounded as the disease not only affects the individual, but also their caregivers, families and society.

Dementia is an umbrella term for several diseases, of which the most common is Alzheimer's disease, ADFM said. 

"Other major forms include vascular dementia, dementia with Lewy bodies, and a group of diseases that contribute to frontotemporal dementia. The boundaries between different forms of dementia are indistinct and mixed forms often co-exist. 

"Dementia is currently incurable, but, non-pharmaceutical treatments and prescribed medications can ease behavioural and psychological symptoms for a period of time."

SPOTLIGHTING DEMENTIA WORLDWIDE

Globally, according to ADI, the latest dementia prevalence statistics show that the number of people living with dementia will rise to 139 million by 2050.

These forecasts, ADI said do not account for the accelerated risk of dementia that may occur as a consequence of Covid-19.

 

Dementia is already the seventh leading cause of death globally, rising as high as first or second in some countries, the group said in a statement to the NST.

Forecasts show increases of almost 2,000 per cent in some countries by 2050, especially those in the Middle East, and potentially almost 30 per cent of all global dementia cases being in China by the same year, said ADI. 

"Dementia forecasts are showing an alarming rise in prevalence by 2050. Age is the biggest risk factor for dementia and the global population is ageing," ADI chief executive officer, Paola Barbarino said. 

"Further, we have serious concerns that the neurological impact of Covid-19 on the brain may spark a future wave of people developing dementia – driving prevalence up even higher," she was quoted as saying in the statement. 

Barbarino had in September 2021 suggested that the degenerative effect of coronavirus could fuel the "pandemic of dementia".

ADI, however, noted that despite dementia prevalence increasing at alarming rates across the world, global progress to tackle the neurodegenerative condition is far too slow.

According to ADI's latest report, only a fifth (39 out of 194) of all WHO Member States have followed through with their promise to create a national dementia plan by 2025, a commitment made during the 2017 World Health Assembly.

While 21 countries are currently developing a national dementia plan, including Malaysia or have integrated dementia within a wider health plan that is also in development. 

In May 2017, the Global Action Plan on the Public Health Response to Dementia 2017-2020 was adopted by the Seventieth World Health Assembly in Geneva, Switzerland.  

The endorsement of the global dementia action plan represents an international commitment to improving the lives of people with dementia, their carers and families, ADI said.

It asserts the need for policy change aimed at enhancing prevention, treatment and care for people with dementia and their carers through better integration of health and social sectors. 

WHY IS DEMENTIA A CONCERN?

ADFM noted that older adults with dementia are particularly vulnerable to various types of abuse, including physical, emotional and physical abuse, neglect, and abandonment. 

"The older adults with dementia are more likely to end up in residential care, institutions which are currently under-regulated in the country, further exposing them to subpar quality care and abuse.

"The dementia community faces various ethical and legal challenges such as advance care planning, surrogate-decision making, testamentary and decision-making capacity (with regards to treatment decisions, life and care choices, property and finance management, and wills); criminal cases perpetrated by people with dementia; apparently mundane issues of daily life such as driving."

ADFM also said it is predicted that in every three seconds, one person in the world develops dementia, and it takes an average of three carers to care for one person with dementia.

ADFM further shared that it is estimated that the overall cost of dementia, including the cost of social care and unpaid family care per person with dementia, stands at USD705 (RM3,095) per person. 

"This amounts to an estimated healthcare cost of USD175 million (RM768 million) per year," the foundation said. 

ADI, concurred saying that as prevalence increases, the cost of dementia climbs even higher. 

The WHO's latest estimates show that the cost of dementia is expected to rise to US$2.8 trillion (RM12.3 trillion) per year by 2030, up from $1.3 trillion (RM5.7 trillion) per year in 2019, said ADI.

The global contribution of informal carers is worth 133 billion unpaid hours each year, ADI noted. 

"If hours of informal care are translated to full-time workers, it corresponds to about 67 million people – all of whom are unpaid, 70 per cent of whom are women," said Barbarino. 

"People living with dementia deserve dignity and care, and it is unpaid caregivers who bear this price, a cost which could be mitigated through a national dementia plan," she said.

WHAT NEEDS TO BE DONE?

ADFM said it is crucial for Malaysia to develop the national dementia action plan soon to prepare the government, stakeholders and the public at large. 

It said in 2019, the Health Ministry organised a workshop inviting medical and non-governmental bodies to discuss WHO's seven action areas of dementia plan in the effort to develop Malaysia's own National Dementia Action Plan (NDAP) 2020-2030. 

However, ADFM said the progress of the plan development was disrupted by the spread of Covid-19 in Malaysia. 

The foundation said it has been informed by health ministry representatives that the NDAP is expected to be completed by September 2023.

"ADFM in its latest follow up with the Health Ministry in December 2021 reveals that the draft national dementia action plan is ready pending discussion and finalisation. 

"Our discussion further reveals that this action plan is in-line with policy statement of National Health Priorities for Older Persons 2008 and its' Plan of Action Healthcare Services for Older Persons 2008-2020. 

"The NDAP adopted the principles in the WHO's global action plan. The national plan, set on three major elements, is proposed to focus on the most urgent actions to make much-needed progress for people with dementia and the health system."

ADFM shared that the NDAP's vision is to ensure effective, comprehensive, affordable, accessible, sustainable dementia care, rehabilitation and supportive services across the country to enable people with dementia to live with dignity and respect.

Its goals are to provide an inclusive dementia-friendly environment that ensures the quality of life of persons living with dementia, their carers and families, thus, reducing its impact on communities and the country, the foundation said.

While its principles are based on person-directed and person-centred; comprehensive; integrated; equity and evidence-based and best practices.

ADI, meanwhile, described Malaysia's NDAP, which is in development as "promising". 

WHY IS IT IMPORTANT FOR COUNTRIES TO HAVE NDAP?

ADI reported that 35 new national dementia plans are needed annually to reach the WHO target of 146 countries (75 per cent) by 2025. 

However, ADI said in many other nations, those who have plans have not funded them, creating once again empty promises and blunt tools.

With only three years left before the deadline to meet the targets of the WHO's global action plan, ADI said it is urging governments to take action now to be prepared for the imminent increase of dementia cases.

Investing in a national plan early can have cost-saving impacts in the future where examples include delaying onset or delaying and avoiding acute hospitalisation or residential care admittance, the group said. 

In the case of emerging treatments, the positive impact of enabling people with dementia and their carers to remain in work ensures they can continue making a positive societal and economic contribution, ADI added. 

"Tackling dementia now for some nations is like climbing Mount Everest - there is so much to do, but all nations need to start somewhere," Barbarino said.

"Time is running out to implement national dementia plans that will help us all cope with the oncoming wave of dementia cases," she said. 

Barbarino stressed that implementing a national dementia plan is a government's best tool for preparing for this looming global health crisis.

"So, for the 155 WHO Member States yet to follow through on their 2017 commitment, we ask – what's your plan? We must act now to minimise the impact of dementia later.

"Continued inaction now will lead to much greater health, care and societal challenges in managing dementia later. Governments must have robust strategies in place, to save healthcare systems from being overwhelmed."

CAN DEMENTIA BE PREVENTED?

ADFM said while there is no certain way to prevent all types of dementia, there is good evidence that a healthy lifestyle can help reduce risk of developing dementia when people are older. 

"Don't smoke. Stay at a healthy weight. Get plenty of exercise. Eat healthy food. Manage health problems including diabetes, high blood pressure, and high cholesterol.

"Stay mentally alert by learning new hobbies, reading, or solving crossword puzzles. Stay involved socially and attend community activities or support groups."

According to ADFM, the existing legislations and laws in Malaysia such as the Power of Attorney Act 1949 and Mental Health Act 2001 are not of sufficient scope or detail to fully protect the lives and rights of older adults, especially those with dementia.

Greater awareness and society inclusion are two key drivers to help the person with dementia to live a dignified and quality life, ADFM added.

"These drivers will inspire understanding and acceptance of an important and debilitating disease; trigger recognition of dementia as a rapid growing health and socioeconomic concern in a rapidly ageing Malaysia; and provide opportunities for open dialogue and exchange of ideas, information and resources regarding the disease.

"It would also promote investment in dementia treatment, support and research; dispel stigma, myths and fears regarding the disease; encourage people living with dementia and their caregivers to come forward and seek professional help and support at the earliest possible stages; and encourage the formation of dementia-friendly environment in various segments of society."

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