Gladys Respati is a Project Coordinator with OnTrackMedia Indonesia, an organization specializing in public awareness campaigns and media consultancy. For World Alzheimer’s Day, Grand Challenges Canada is featuring their project “Kickstarting Alzheimer’s Awareness in Indonesia.”
Pak Nurhadi is a 67-year-old pensioner who lives in a small house with his wife, Bu Siti (63), and his 83-year-old mother-in-law who has been diagnosed with Alzheimer’s disease. Pak Nurhadi’s wife is the primary caregiver, but he often shares the burden and hardships in caring for a person with dementia. Although capable of recalling long term memories from her youth, Pak Nurhadi’s mother-in-law has difficulty retaining new information. Memory loss, ‘odd’ and often ‘troubling’ behaviour, and frequent incontinence are just a few examples of what Pak Nurhadi and his family have to deal with on a daily basis. Fatigue and mental exhaustion lead to conflict between Pak Nurhadi and his wife. For Pak Nurhadi, controlling his emotions is perhaps the hardest part of living with a person with dementia.
There are many stories similar to Pak Nurhadi’s in Indonesia, where Alzheimer’s disease has only recently come to public attention. Memory loss is frequently perceived as a normal part of aging, and the government has not prioritised dementia as an important health issue. Many cases have potentially gone undetected, resulting in a lower quality of life for people with dementia and their families/caregivers.
In 2014, with the support of Grand Challenges Canada (funded by the Government of Canada), OnTrackMedia Indonesia (OTMI) & Alzheimer Indonesia (ALZI) launched the “Kickstarting Alzheimer’s Awareness in Indonesia” project. Through this project, OTMI and ALZI aimed to put Alzherimer’s under the spotlight through high-visibility, awareness-raising activities for the public, such as: Memory Walks in Jakarta, Semarang and Yogyakarta; 2 national seminars in September 2014 and April 2015; and a nationwide writing competition that garnered over 700 participants, ranging from journalists, medical practitioners, to the general public. More recently, the campaign has moved on to a younger audience by holding educational, awareness-raising initiatives in secondary schools, high schools and vocational schools, and reaching out to an estimated 10,000 students in Jakarta.
OTMI & ALZI also partnered with Juara Agency, a news media to produce a series of short, animated videos to explain the 10 warning signs and 7 stages of Alzheimer’s, and a tutorial on how to care for a person with dementia. The 10 signs video has been broadcast during talk shows on various national and regional TV stations in Indonesia, and variations of it were featured on LED billboards across Jakarta throughout World Alzheimer’s Month in September 2014. Along with coverage in printed and electronic media, the campaign achieved a public relations value of US$ 2 million and reached an estimated 66 million people. The videos have been very well received by the public, and are now regularly used during ALZI’s educational awareness-raising activities. Many health institutions have even requested copies of the 10 warning signs video, which they will play in hospital and clinic waiting rooms.
All of these efforts have been reinforced by strong public-private partnership, in which various government institutions, private companies, and elderly-friendly organisations have contributed by providing funding and expertise. The City and Provincial Governments of Jakarta, Central Java, and Yogyakarta, CIMB Niaga Bank, PR consultant Maverick, Juara Idea Agency, Yayasan Emong Lansia (YEL), Cipto Mangunkusumo, Kariadi and Sardjito General Hospitals are just a few of the many partners who assisted last year’s campaign, and continue to provide support today.
Along with public campaigns, OTMI & ALZI have also held monthly caregiver meetings in Jakarta and Yogyakarta, where caregivers can gather, share their experiences, and learn new methods of caring for a person with dementia directly from doctors, psychologists, and other experts in the field. In addition to these regular get-togethers, ALZI has also held training classes that aim to increase the capacity of caregivers.
In Indonesia, the road to becoming a truly elderly friendly country is still long, but we are making way for progress. Spurred by an increased awareness of the importance of tackling Alzheimer’s disease, brought about by the success of OTMI & ALZI’s campaign, an official Dementia Alzheimer National Plan and a Presidential Decree are now currently being formulated to provide guidelines for a combined effort for the prevention of Alzheimer’s disease and other forms of dementia. This will include public awareness campaigns and promotion of healthy lifestyles, ensuring access and information to high-quality services, diagnosis and early detection for Alzheimer’s and other forms of dementia, capacity building for health professionals and non-medical workers involved in the treatment of people affected by the disease, and research.
By raising awareness and encouraging all stakeholders to start taking action, we hope to improve the lives of people with dementia, as well as caregivers such as Pak Nurhadi and Bu Siti, and perhaps someday even eradicate Alzheimer’s disease in Indonesia.