Report on the dementia situation in Indonesia
Executive Summary:
The dementia care landscape in Indonesia: context, systems, policies and services
Tara P Sani, Marselia Tan, Imelda Theresia, Patricia Tumbelaka, Aditya Putra, Yvonne S Handajani, Ni Wayan Suriastini, Nugroho Abikusno, Tri Budi W. Rahardjo, Yuda Turana, Klara Lorenz-Dant, Wendy Weidner and Adelina Comas-Herrera
Indonesia is the 4th most populous country in the world, having a population of 262.79 million people in 2018 (CIA World Factbook, 2019), which is predicted to rise to 305.6 million in 2035 (Subdirectorate of Statistical Demographic, 2013). Indonesia define lanjut usia/older people as people who are 60 years old or above, and in 2010 the census found that 7.6% of the population are in this category. It is expected that in 2035, older people will make up about 15.8% of the population (Adioetomo & Mujahid, 2014, p.xv). This increase in ageing population means that there will be more people to be supported by the productive age group, which can affect the country’s economic productivity.
Since 2014, Indonesia has introduced universal health care throught the Jaminan Kesehatan Nasional (JKN)/National Health Insurance System, which covers a wide range of services provided by the public sector and registered private providers. It is mainly financed through the government subsidies for socio-economically vulnerable users and independent contributions from civil servants, private sector employees salary/income (TNP2K, 2018, p.83).
The public sector of Indonesian healthcare system are mainly run by the Puskesmas (providing primary health care), Posyandu (focusing on promotive and preventative measures and mainly run by volunteers), and hospitals. Indonesia still has a relatively low density of medical practitioners compared to the world average, and the government has declared a focus on strengthening primary care physicians as a national policy agenda (Claramita et al., 2017, pp.24,27).
Indonesia is still in the process of developing its public Long-term Care (LTC) system. It is mainly comprises of social security mechanism and health care. Puskesmas and Posyandu play a big role in providing LTC, particularly in relation to the health care sector, but the available service differs across provinces.
Day care, respite care, and institutional care is still scarce in this country where caring for older people, children, and vulnerable members of the community are culturally and legally viewed as the responsibility of the family.
Indonesia has launched a National Dementia Plan 2016. Dementia primarily remains the Ministry of Health’s responsibility, while other ministries such as Coordinating Ministry for Human Development and Cultural Affairs, Min. Family Planning, Min. Social Affairs, Min. Education, Min. Finance, and Social Insurance Administration Organisation are important stakeholders influencing ageing and dementia policy in the country (Ministry of Health Republic of Indonesia, 2015b). A recently-issued National Strategy of Ageing compliments the National Dementia Plan in setting a direction for dementia policy in Indonesia.
Although the awareness of dementia is generally still low across the country, and that stigma surrounding the condition is still very prominent, awareness of dementia has been increasing over the past few years, promoted through the active campaigns done by NGOs such as Alzheimer Indonesia. There has been numerous partnership between the government, private sectors, and NGOs/civil society to raise awareness of dementia across the country.
Alzheimer’s Disease International (ADI) predicts that in 2050, almost 4 million people in Indonesia will live with dementia (Prince, et al., 2015). However, there has not been any routine monitoring of the number of people with dementia in Indonesia. Other than ADI’s prediction, there are two separate studies in two provinces of Indonesia conducted by an independent research institution, Surveymeter (Suriastini et al., 2016, 2018), which indicates a possibility of higher prevalence of cognitive decline compared to the global average. Recently, STRiDE-Dementia project has done a research on prevalence and cost of care of dementia in two provinces: DKI Jakarta and North Sumatera, and the data is expected to be published in 2022-2023. Considering the high prevalence of conditions posing higher risk of dementia, such as hypertension, diabetes, smoking, and physical inactivity, we might observe a high dementia prevalence.
Screening for dementia is supposed to take place at the primary care level, in which suspected cases will be referred for diagnostic measures at hospital levels. Diagnostic pathways still differ across the countries, with inequal distribution of health care resources between urban and rural areas. The screening tools recommended also differ between different guidelines/policy. A standardised clinical guideline which can be implemented across the country, backed up with locally-relevant evidence and provided with a clear instructions is needed.
There is a limited coverage by the JKN on treatment options (pharmacological and non-pharmacological) for dementia, which prompted some families to take the self-funded pathway to obtain diagnosis and management, even in some cases going abroad to get diagnosed.
When people are diagnosed with dementia, most commonly the family will take care of them. Data from Indonesian Family Life Survey 2000 show that unpaid Indonesian caregivers were predominantly women (54.3%) and only 41.4% were educated until senior high school or college level (Hoang et al., 2012). Support for caregivers are still limited, and NGOs play a big role in providing them.
With the COVID-19 pandemic, people with dementia are at a higher risk to experience severe symptoms or to die. Unfortunately, there is no data yet specifically on COVID-19 mortality or morbidity rate in people with dementia. The pandemic has disrupted a lot of available support programme for people with dementia and their carers, such as Posyandu Lansia, but has given way for raised awareness of mental health. This, along with the further development of teleconsultations, have made online psychological support more widely available for caregivers.
The limited data on dementia in Indonesia calls for more commitment from all stakeholders to support research. There are a lot of potentials in dementia research in Indonesia, for example using data from JKN. It is also important to make dementia research tools available to clinicians and resarchers across the country, including having cognitive screening instruments translated in more local languages and dialects in Indonesia. Having more high-quality and locally-relevant evidence on will support dementia policy-making in responding better to this health and socioeconomic challenge.
The full desk review is available here
References:
CIA World Factbook. (2019). Indonesia. https://www.cia.gov/the-world-factbook/countries/indonesia/
Subdirectorate of Statistical Demographic. (2013). Indonesia Population Projection 2010-2035. BPS – Statistics Indonesia.
Adioetomo, S. M., & Mujahid, G. (2014). Indonesia on The Threshold of Population Ageing – UNFPA Indonesia Monograph Series: No.1. (H. Posselt, Ed.; Issue 1). UNFPA Indonesia.
TNP2K. (2018b). The future of the social protection system in indonesia: social protection for all (p. 83). http://tnp2k.go.id/download/24864181129 SP Exe Summary ENG-web.pdf
Claramita, M., Syah, N. A., Ekawati, F. M., Hilman, O., & Kusnanto, H. (2017). Primary Health Care Systems (PRIMASYS): Comprehensive case study from Indonesia. World Health Organization (pp.24,27). https://www.who.int/alliance-hpsr/projects/AHPSR-PRIMASYS-Indonesia-comprehensive.pdf
Ministry of Health Republic of Indonesia. (2015b). National Strategy: Management of Alzheimer and Other Dementia Diseases: Towards Healthy and Productive Older Persons. Ministry of Health Republic of Indonesia.
Prince, M., Wimo, A., Guerchet, M., Ali, G.-C., Wu, Y.-T., Prina, M., & Alzheimer’s Disease International. (2015). World Alzheimer Report 2015 The Global Impact of Dementia: An analysis of prevalence, incidence, cost and trends. https://www.alz.co.uk/research/WorldAlzheimerReport2015.pdf
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