My mother, Tien Suhertini Suharya, was diagnosed with vascular dementia in 2009. Looking back, I now know that she was displaying typical symptoms of the disease long before that, including memory loss, disorientation and changes in mood and personality. Dementia is a general term for a decline in cognitive ability severe enough to interfere with daily life, and it’s often caused by damage to brain cells. Alzheimer’s is the most common cause of dementia, accounting for 60–80% of cases.
The experience drove me to seek work opportunities abroad, so I would not have to spend time at home. I worked as a journalist and later as a public health communication consultant for organisations like the World Bank, WHO, and UNICEF.
However, in 2012 while I was pursuing my PhD in Public Health at Curtin University in Perth, Australia, I received a call from my father, informing me of my mother’s declining condition post-diagnosis. Like many people, I suddenly found myself confronted with the decision of having to provide care for my mother, as well as my father, rather than continue with my studies. Just as it was for me, for so many, this is often not a ‘choice’ but a new reality that they are suddenly forced into.
The problem of ageing is adding to the need for dementia care, as the number of older adults increases worldwide. This strains families, healthcare systems, and economies as they grapple with the challenge of providing adequate support and care for those affected by dementia.
After 15 years of living abroad, I decided to return home to become a full-time caregiver for my mother. This ended up being one of the most fulfilling and rewarding decisions I have ever made in my life.
Like many people, I suddenly found myself confronted with the decision of having to provide care for my mother, as well as my father, rather than continue with my studies.
Studies have shown that compared to other caregivers, dementia caregivers are more likely to consider the caregiving activities as highly stressful, have higher levels of burden and psychological distress, and report higher levels of burdens on multiple dimensions— financially, emotionally, and physically.
ALZHEIMER’S INDONESIA
When I returned home to begin my duties as a family caregiver, alongside my father, sister and a domestic worker that we hired, it became a full-time job that not only affected my mother but our entire family. Burnout is one of the biggest problems for caregivers, and we were no exception.
By being a full-time caregiver for my mother, I realised that there was a lack of support, information, resources and understanding of what dementia and Alzheimer’s Disease is in Indonesia. The following year, in 2013, on my mother’s birthday, I founded Alzheimer’s Indonesia (ALZI) with a few family caregivers and healthcare professionals in Indonesia with the aim of improving the quality of life of people with dementia and family caregivers in Indonesia, because my family members’ quality of life was affected.
After seeing the successes and real changes made to improve the lives of people living with dementia and caregivers in Indonesia through Alzheimer’s Indonesia, I knew I wanted to make an even bigger difference.
The first initiative that ALZI organised was a caregivers meeting as a platform for family caregivers to seek support, information and network. ALZI’s started our caregiver meeting support group with 20 family caregivers in Jakarta, Indonesia in October 2013. It has been consistently conducted not only in the capital city but also in more than 10 other cities in Indonesia. Currently, ALZI has been supporting more than 6,000 families, volunteers, and chapter leaders in 18 cities in Indonesia and seven cities overseas (Indonesian diaspora community). ALZI communities have nearly 10,000 followers as of 2023.
In December 2022, the PBS News Hour ‘Brief But Spectacular’ programme broadcasted a three minutes video of my journey as a caregiver that led me to my advocacy work both in ALZI and Alzheimer’s Disease International (ADI). I realised from more than 42,000 likes and viewers on PBS, Instagram, Tik Tok and Facebook that I have indeed been on the right track of a purpose-driven life. People that I do not know from all continents of the world reached out to me, shared their stories, and followed my social media account as well. I did not realise how much this issue of an ageing population and cognitive decline added to the need for dementia care and a sense of solidarity everywhere around the world. This precious experience touched many people around the world. I owe it to my mom for giving me a sense of purpose in my life and I am forever grateful. Mom: You are my forever sunshine!
DY’s interview featured on PBS News Hour’s ‘Brief but Spectacular’:
https://www.pbs.org/newshour/brief/439136/dy-suharya
By 2050, the global number of people with dementia is projected to triple to 153 million, up from 57 million in 2019, due to population growth and ageing. Urgent action is required to intensify prevention efforts through lifestyle interventions and expand health and social care resources.
ALZHEIMER’S DISEASE INTERNATIONAL
After seeing the successes and real changes made to improve the lives of people living with dementia and caregivers in Indonesia through ALZI, I knew I wanted to make an even bigger difference. In 2016, I had the opportunity to become Alzheimer’s Disease International (ADI)’s Asia Pacific Regional Director, where I am responsible for overseeing 20 countries in the region. My work as a Regional Director aims to strengthen our member associations to be self-reliant and to have the ability to provide services and support needed for people living with dementia and their family caregivers in their respective countries.
We advocate National Dementia Plans as the best tool for effectively managing and slowing increased rates of dementia prevalence, improving the quality of life for those affected, and mitigating the social and economic impacts on families and communities..
In the last year, the capacity-building activities and achievements around advocacy and continuum of care for our member associations in the Asia Pacific have been significant. From
the 2022 ADI Asia Pacific regional meeting and conference in Taipei, Taiwan which attracted over 1,000 participants from 20 countries, to the establishment of partnerships with several universities and organisations and our ongoing Twinning programme, our associations show no sign of slowing down the ways they can be of most support to those most impacted by dementia.
As of 2023, eight of our member associations in the Asia Pacific region have also stepped up to launch National Dementia Plans (NDPs) in their respective countries, with another six currently in development.
NDPs are comprehensive, government-led strategies which aim to address the challenges posed by dementia through research, care, advocacy, and support services. At ADI, we advocate NDPs as the best tool for effectively managing and slowing increased rates of dementia prevalence, improving the quality of life for those affected, and mitigating the social and economic impacts on families and communities.
As we look towards the future, innovations like telemedicine, improved diagnostic tools, and the availability of new treatments are poised to play a significant role in enhancing the lives of those affected by dementia. We are already witnessing the transformative impact of these innovations, as remote consultations, support, and monitoring for individuals with dementia and their caregivers increase access to care and alleviate the burden on healthcare systems.
As these advancements in care and treatments become increasingly more mainstream, the importance of NDPs cannot be overstated. By having an NDP, healthcare systems and communities are better prepared and more equipped to adapt to the evolving landscape of dementia care and support, as well as the posing issue that dementia poses on our families, our communities and our cities.
GETTING SUPPORT
I dream of a future where dementia has a cure, a solid support system in society and no one has to endure the challenges, pain and uncertainty that I and so many countless others have faced, either as carers or the ones being diagnosed.
By having accidentally found myself as a member of the global dementia community, a founder of an Alzheimer’s Association, a participant in high-level advocacy, and on the ground with Alzheimer’s and dementia associations from all over the world, I know just how much incredible, inspiring work is being done by so many people like myself.
If someone you know, or a loved one, finds themselves in such a position, I encourage them to reach out to their national, regional, or local Alzheimer’s and dementia association. No one has to go through this journey alone.
As we continue to work towards a future where everyone has equal access to information, support, care, and ultimately a cure, it’s important to remember the power of community, advocacy, and support. There is also the future of dementia diagnosis and care using solutions-based innovative telemedicine that will support people in their journey of caring. By sharing our stories and experiences, exploring the maximum capacity of a community-support group network and linking it up to technology, we can increase the ability to provide high-quality care, raise awareness and understanding of dementia, to create a more compassionate and informed society that’s better equipped to care for those affected and their families. Together, we can face the challenges of dementia and create a brighter future for all.
DY SUHARYA
Dy Suharya is the Regional Director of Alzheimer’s Disease International (ADI) Asia Pacific Region and Founder of Alzheimer’s Indonesia (ALZI). With more than 20 years of experience in public health, public-private partnerships and communication, DY has worked as a Health Communication Consultant with the World Bank, WHO and UNICEF. DY’s mother was diagnosed with Dementia in 2009 and has been her source of inspiration in improving the quality of life for people with dementia, caregivers and inter-generations through the establishment of Alzheimer’s Indonesia since 2013. Her mother passed away in April 2017, but her legacy continues. DY’s been recently recognised as one of the Ageing Asia Global Ageing Influencer (2021) and as one of the WHO UN Decade Healthy Ageing 50 Leaders to transform the world to be a better place to grow older (2022). DY Suharya can be contacted at dsuharya@gmail.com.
AUGUST 2023 | ISSUE 11
THE ART, SCIENCE AND GOOD NEWS OF AGEING
