Kusumadewi "DY" Suharya
    Category: Inspiring Women By : Ulisari Eslita Read : 274 Date : Tuesday, April 10, 2018 - 21:01:31

    Toto Santiko Budi for Forbes Indonesia

    According to the World Alzheimer Report 2015, there are at least 46 million worldwide who live with dementia—more than the population of Spain. This number is estimated to increase to 132 million by 2050. In Indonesia, there are at least 1.2 million people who live with dementia, better known as pikun. The most common type of dementia is Alzheimer, accounting for an estimated 70% of cases. Alzheimer is a slowly progressive brain disease that begins well before symptoms emerge. Eventually sufferers can die from the disease due to complications stemming from the brain’s lose of control of bodily functions.

    After public health expert Kusumadewi Suharya’s mother was diagnosed with dementia, she founded the advocacy group Yayasan Alzheimers Indonesia (Alzi) in 2013. She has worked tirelessly to raise awareness about dementia with officials and the public, and Alzi’s message has reached at least an estimated 150 million Indonesians, with Alzi active in 12 cities and about 1,000 volunteers in 20 provinces. Alzi also works with the U.N.’s World Health Organization on dementia issues.

    In large part because of Kusumadewi’s efforts, in 2015, the Jakarta government declared Jakarta a “dementia and age-friendly” city, and in 2016, the Health Ministry launched a national dementia plan. “This is the first time in Southeast Asia [for a national plan],” says Kusumadewi, who goes by DY. Another positive sign: requests for dementia checks in hospitals in Jakarta, Semarang and Yogyakarta have tripled in recent years. Her most successful effort is the “Jangan Maklum Dengan Pikun” (do not underestimate memory loss) campaign, which educates society on the early warning signs of dementia, and how to handle it.

    She also made dementia work into a career, working as the regional director for Asia-Pacific for the London-based global NGO Alzheimer Disease International (of which Alzi is a member). Last year was a significant one for DY, as Alzheimer Disease International’s Asia Pacific annual regional conference was held in Jakarta, and she was also named as an Ashoka Fellow for her dementia work.

    DY has been responsible for helping change conventional attitudes, which assume dementia is just part of growing old, and a shameful burden to be kept secret. Sometimes those with dementia are kept inside a house against their will by their own families. “They are kept out of the public eye as they are considered a stigma on their family,” says DY.

    DY’s family, at first, adopted a similar attitude when their mother Tien Suharya began acting strangely—becoming forgetful, short-tempered and depressed. Before being diagnosed with dementia in 2009, DY and her family couldn’t recognize the symptoms. “I didn’t feel comfortable at home and I decided to escape,” DY recalls, who moved to Australia to get a doctorate in public health at Curtin University.

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