Dementia is often considered a normal part of aging, leading memory loss and behavioral changes in older adults to be dismissed as ordinary. This can delay early symptoms, while families may not be prepared to meet the increasingly complex care needs that arise as the condition progresses.
The World Health Organization (WHO) estimated that approximately 55.2 million people worldwide were living with various forms of dementia in 2019. As the global population grows and ages, the number of people with Alzheimer’s disease and other forms of dementia could reach 139 million by 2050. South and Southeast Asia, including Indonesia, are among the regions with the highest numbers, with approximately 20.1 million people affected.
Alzheimer Indonesia estimated that 1.2 million people in Indonesia were living with dementia syndrome in 2016, a figure that could rise to 4 million by 2050.
Indonesia faces a significant challenge in addressing this health concern; clear national data on dementia prevalence are not yet available, and programs to address the condition still need strengthening. Dementia care extends beyond medical treatment: family support, health care workforce readiness, and long-term care planning all play important roles.
Early detection and prevention starting at a young age are therefore essential to help people with dementia (PwD) maintain their quality of life while preparing their families for changes as the condition progresses.
Dr. Sri Mulyani, S.Kep., Ns., M.Ng, a lecturer in mental health and community nursing at UGM’s Faculty of Medicine, Public Health, and Nursing (FK-KMK UGM), explained that families play an important role in recognizing behavioral changes in PwD. Family members often notice changes first, including behavior that differs from a person’s usual patterns.
“Usually, the people closest to them are the first to notice that something seems unusual or that their behavior has changed. What tends to be most disruptive is the change in behavior, not just forgetfulness,” she explained on Thursday (Oct. 22).
Some forms of forgetfulness can be considered normal aging. However, behavioral changes associated with dementia need to be recognized so that individuals can undergo medical assessment promptly. Early detection also helps families and health care professionals develop care plans tailored to people with dementia.
Families Play a Role in Long-Term Care
Dementia care involves informal caregivers, such as family members and neighbors, as well as formal or professional caregivers, including nurses, doctors, and nutritionists. Both groups help people with dementia maintain their independence, productivity, and quality of life after diagnosis.
“A diagnosis does not mean that life is over. After diagnosis, families still need to support and involve people with dementia, or PwD, in daily life so they can remain active. They should also continue to participate in family activities and receive support in pursuing their hobbies,” Sri said.
Early diagnosis also allows families to plan for long-term care. Dementia is a progressive condition that can worsen over time, although the rate of progression varies from person to person. Families need to prepare for the possibility that people with dementia will eventually require assistance with daily activities, such as bathing and eating, and may ultimately need round-the-clock supervision.
This planning includes dividing caregiving responsibilities, arranging finances, and documenting the person’s preferences regarding care and asset management. Planning early helps families anticipate future needs and reduces difficulties as the person’s condition worsens.
Nurses can also help families recognize symptoms, determine the need for further assessment, and adapt the home environment to improve safety. For example, families can place signs on bathroom doors, keep eating utensils in clearly visible locations, and store dangerous objects in locked places. These adjustments help people with dementia carry out daily activities according to their abilities.
Public Awareness and Health Care System Readiness
Although early detection is important, public awareness of dementia remains a challenge. People need to understand the difference between forgetfulness commonly associated with aging and symptoms that may indicate dementia, as well as know what steps to take when these signs appear.
“The biggest challenge is raising awareness first. Everyone needs to understand what dementia is and what its symptoms look like so they can distinguish normal aging from signs that may indicate dementia,” she explained.
Indonesia has had a National Dementia Plan since 2016. However, its implementation remains suboptimal. Public education must include information on where to seek assessment, how referral processes work, and which services are available so people with dementia receive appropriate care.
The health care system also needs improvement, particularly because Indonesia still lacks clear national data on dementia prevalence. Several studies have been conducted, but their scope has not yet provided a comprehensive picture. Screening results also cannot be equated with a diagnosis.
“There are no clear data on the number of people with dementia in Indonesia. What we have are studies with relatively limited sample sizes and screening results, which are different from diagnoses,” she said.
Compared to this situation in Singapore, which has implemented intensive prevention efforts. In her view, Indonesia still needs to strengthen public education, early detection, and community nursing services to meet dementia care needs both now and in the future.
Prevention Starts Early in Life
In addition to early detection, dementia prevention must begin before people reach old age. Research suggests that up to 40% of dementia cases could potentially be prevented by addressing risk factors. In Indonesia, education is one area that needs attention, alongside cardiovascular health.
“Research has shown that up to 40% of dementia cases may be preventable if preventive measures are taken from an early age,” she said.
Hypertension and diabetes need to be controlled to reduce the risk of cardiovascular diseases that may contribute to dementia. Dietary habits should also be addressed from childhood, particularly the consumption of fast food and foods and drinks high in sugar and calories, which can increase the risk of cardiovascular problems later in life.
Health education should begin as early as possible so people understand the link between lifestyle habits, heart health, and brain health.
“What is good for the heart is also good for protecting the brain,” she said.
Dementia can develop over decades before a person eventually requires round-the-clock care and supervision. Therefore, reducing risk factors, recognizing symptoms early, and ensuring support from families and health care professionals must go hand in hand to maintain the quality of life of people with dementia and prepare for their long-term care needs.
Author: Zabrina Kumara
Editor: Gusti Grehenson
Post-editor: Jasmine Ferdian
Photo: Magnific