Kusumadewi (DY) Suharya

For long dementia has been considered as normal process of aging. Not many people realized that in most cases it is caused by Alzheimer, a degenerative disease affecting the brain tissue. DY is creating a support system for people with dementia as well as building public awareness of warning signs.

DY pioneers a cross generations movement to improve the quality of life of people with Alzheimer and their caregivers as well as reduce the risk of dementia among general population. Through Alzheimer Indonesia Foundation (ALZI), the first and only organization addressing Alzheimer in the country, she’s building her vision of active dementia and ageing friendly cities across Indonesia.

DY is educating the common to view dementia as a public health problem, thus engaging them in prevention measure rather than passively accepting the condition. Through “Do Not Underestimate Memory Loss” campaign, DY is introducing early warning signs of dementia and what to do upon detection. The impact is indicated by sharp increase of request for early detection of Dementia and cognitive issues in 3 hospitals in 3 cities of Indonesia. There’s also an increase of demand on seminar and educational session on dementia. This campaign also includes education on healthy lifestyle as part of risk reduction.

Furthermore, DY is advocating municipality government to integrate promotion, prevention, and care of dementia into municipality program and infrastructure. Jakarta, the first in Indonesia to declare itself as Dementia and Ageing Friendly City, launched recently its “purple troop”, a multidisciplinary task force to provide public educate on dementia risk reduction and assist people with dementia found around the city. This initiative is led by Office of Social Affair, involving general practitioner, neurologist, psychiatrist, psychologist, communication expert, legal expert, community leader, and government official from health and social sector.

DY realizes how tackling dementia would require a holistic approach. Recently, she advocated Health Ministry to launch Indonesia’s Dementia National Plan in March 2016 which covers national efforts on awareness, risk reduction and health promotion, early detection, access to quality care, and fulfilment of human rights for people with dementia. The plan includes strengthening human resources and overall infrastructure, promoting life cycle approach, and supporting research on cognitive and dementia issues.

The campaign has been appreciated regionally, indicated by adaptation of the information, communication, and education material to 10 languages to be used in 5 countries (among which Arabic, French, and Dutch). Nationally, ALZI has been the go-to-source on all things related to dementia. The caregiver support group started in Jakarta (1 city) and has now grown to 10 cities in Indonesia with 3 ALZI champions.

Dementia is a manifestation of Alzheimer disease, commonly found among senior citizen. In the World Alzheimer Report 2015 it was estimated that 22.9 million people were living with dementia in the Asia Pacific region, with 1.2 million of whom in Indonesia. This figure is projected to reach 67.2 million by 2050 - a 194% increase over 35 years. The cost of dementia in the region was estimated to be US$180.1 billion.

As it affects mental function, dementia cause a profound impact on individuals and caregivers, including increased risks in performing daily activities. However, most people understand it as normal part of aging, the solution for which would be facilities like retirement home or professional palliative home care. This induced further social stigma that view people with dementia, particularly senior citizen, as a burden of society and object of ridicule. While higher life expectancy would result in increase of elderly population, it’s timely to view dementia as public health problem and make effort to ensure wellbeing of the population.

DY established ALZI to improve the quality of life of people with Alzheimer and their caregivers. As Alzheimer’s disease is life-changing for both those who are diagnosed and those close to them, she initiated the first Alzheimer caregiver support group in Indonesia which provide a place for caregivers to connect with other caregivers who truly understand what they are going through as well as exchange practical information on caregiving problems and possible solutions, talk through challenges and ways of coping, and share feelings, needs and concerns. Engaging neurologist, psychiatrist, psycho-getriatrician, psychologist, and medical doctor, through Basic Dementia Care Skills program for caregivers and monthly caregiver meeting, she builds caregivers’ capacity to understand the disease and how to properly treat Alzheimer patients as well as mentally strengthen the caregivers due to the higher risk of stress and depression. Started in Jakarta 3 years ago, it now has been spreading in 10 cities in Indonesia. Furthermore, Dementia Care Skills training for family caregivers, careworkers and domestic workers, modules has been certified and endorsed by Alzheimer's Disease International, and in the process of getting it certified nationally in Indonesia as means to providing paid services.

More than 70 percent of people in Indonesia consider memory loss as normal part of aging, rather than understand it as Dementia symptom. To prevent people, especially younger generation from Alzheimer and to enable people for early detection, therefore, DY coined popular jargon “Jangan Maklum Dengan Pikun” (Do Not Underestimate Memory Loss) to raise public awareness about 10 Warning Signs of Alzheimer. The campaign and movement have increased visibility of dementia awareness and influenced the public across generations. It has also seen the introduction of community-based initiatives in Indonesia on the importance of having a healthy brain, taking part in activities to minimise the risk of getting dementia and empowering the elderly to remain active and participate in society. Key words for the campaign have been ‘partnership’ and ‘collaboration’, with the successful impact of involving public private partnership champions from Government, Private Sectors, Institutions, Media,Communities etc. In just a year of the campaign, objectives have been achieved beyond expectation, far more people from the general public have been reached (a total of 150 million people out of the 250 million Indonesian population) and support from multi-disciplinary experts has been gained and volunteers have in-creased from 5 people to more than 1000 in more than 20 provinces in Indonesia and 3 other countries (Swiss, UK, Netherland).

DY advocated DKI Jakarta administration to create Alzheimer-friendly city which has declared Jakarta as a Dementia and Age Friendly City in September 2015. The idea materialized with the launch of integrated support from technology and other resources through the Purple Troops (including health practitioners, social workers, community leaders and other professional volunteers) who aim to provide services and information related to dementia care and risk reduction activities in Jakarta City. With all support systems in place, the 10 warning signs of Alzheimer’s and information about the ways to reduce the risk have been broadcasted in Jakarta City’s LED videotron. DY also designed city park dedicated for senior citizen which includes social activities and brain exercises to help reducing the impacts of Alzheimer on the patients as well as preventing young generation from Alzheimer’s disease. Successfully convinced the governor, the prototype will be replicated in many city parks in Jakarta, managed by caregivers and Dementia’s Friends. With the support Educational Director of Jakarta, more than 20,000 youth from junior high, high school, vocational school students have received information on Dementia care.

In 2017, DY is developing and working to collaborate with another business enterprise in delivering services related to home care for the ageing community, person with dementia and caregivers, eventually by 2020 ALZI will have a Centre of Excellence that provides all of these paid services, such as early detection/screening by our scientific committee members network, consultation and counselling in collaboration with psychologists, psychiatrists, neurologists, geriatrician (linked up to home care), educational-awareness raising sessions, training to equipped caregivers the knowledge and skills needed in providing person centred care approach, risk reduction services, active ageing programs, establishing a dementia and age friendly city.

In 2008, when DY had just started working on her PhD in Public Health at Curtin University in Perth, Australia, her dad told her that her mother had been diagnosed with malnutrition. A year later, the situation worsened. Her mother was not only malnourished, but the doctor’s MRI test and assessment had diagnosed her with vascular dementia, the second most common cause of dementia and results from decreased blood flow to the brain, which deprives brain cells of essentials nutrients and oxygen. Her mother was 75 when she received the diagnosis from the doctors, but from what DY can recall her mother had been gradually demonstrating each of the 10 warning signs of Alzheimer for 20 years. Her behavior made DY avoided her mother and settled overseas.

The official diagnosis from the doctors, received in 2009, affected DY deeply and eventually motivated her to leave Australia and come back to be near her mother in early 2012. It inspired her as well to establish Alzheimer’s Indonesia (ALZI) in August 2013. However, in her years as a student living in Australia, she got a job working part time as a bus driver. Her job was to pick up and drive elderly and special needs people from their homes to workshops and offices, where they would work and be productive. They were paid A$2000 per month by the government and private sector as part of corporate social responsibility. She learnt that collaboration is the key to make a similar scheme happen in Indonesia.

Her mother is now in the last stage of Alzheimer’s, and she knows there is nothing she can do to cure her mother. However, her mother has empowered DY to initiate further collaboration with government, private sector, institutions, support groups, communities and all sectors to reduce people’s risk of contracting dementia or any other non-cardiovascuar disease.

DY has approximately 10 years of experience in public health and 10 years of experience in media and communication. Currently, she is assigned as Regional Director Asia Pacific Alzheimer’s Disease International to monitor and assist 17 countries of Alzheimer’s Disease International members in Asia Pacific. DY takes the opportunity to put Indonesia as role model for other countries and spread her ideas across the region. In 2017, ALZI will host Alzheimer’s Disease International Asia Pacific Conference which estimated 1000 participants from 17 countries will join in.