Memory loss matters for all of us

Building a cross-generation movement in Indonesia for those with dementia and their caregivers

Ashoka
Changemakers
2 min readSep 27, 2021

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Photo credit ALZI Indonesia

There are over 55 million people with dementia around the world, and nearly half live in the Asia Pacific region. Indonesia-based Ashoka Fellow DY Suharya experienced first-hand the lack of social support for patients with dementia and their families when her mother was diagnosed. She has since been pioneering a cross-generations movement that improves the quality of life of people with dementia and their caregivers.

For World’s Alzheimer’s Month, we caught up with DY to hear about how she is creating the first generation of institutions, practices, and values that are shaping Indonesia’s public-health response. You can watch the full conversation here. Here are a few highlights:

Early diagnosis makes a difference

According to Alzheimer’s Disease International latest report, 75 percent of people with dementia globally are undiagnosed, equating to roughly 41 million people. DY founded ALZI Indonesia knowing that an earlier diagnosis would have spared her mother and her entire family a lot of pain and confusion.

Dementia concerns us all — young and old

While most people affected by dementia are above the age of 60, early-onset dementia also affects younger people. DY shared that there are 12 risk factors for memory loss and that there’s a lot we can do throughout our lives to prevent or delay it:

Memory loss & caring across generations

Young and old, patients and caregivers, dementia is everybody’s business. ALZI Indonesia has become an intergenerational platform for everyone wanting to contribute their talent and care.

#YouAreNotAlone: Building mutualist support systems

Being a caregiver is beautiful and it’s also hard. That’s why ALZI Indonesia and Alzheimer’s Disease International have put such emphasis on building community-based support systems.

Indonesians are mobilizing, at home and abroad

The movement has grown rapidly from 5 chapters in its first year to 21 chapters spread across Indonesia, and abroad as well thanks to Indonesians in the diaspora.

Shaping Indonesia’s national dementia agenda

The wave of awareness and advocacy generated by this movement has jolted Indonesia’s government into action. It has led to the creation of the first generation of powerful policies and institutions serving people with dementia and their caregivers.

Bringing care navigators to all

There is still much to be done to ensure everyone has access to information, early diagnosis and care. Next up: exponentially growing the number of care navigators across Indonesia and beyond!

Listen to the full conversation here.

Follow DY on Twitter: @DYSuharya

Follow Alzheimer’s Indonesia (@alzi_indonesia), and Alzheimer’s Disease International (@AlzDisInt)

Ashoka is a community of almost 4,000 social entrepreneurs in 90+ countries and their networks of social entrepreneurs. Welcome Change is our weekly “news hour” with Ashoka Fellows on timely topics. See upcoming (and past) conversations here.

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Ashoka
Changemakers

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