(T-shirt translated: “Do not underestimate memory loss”)
DY Suharya is the Founder of Alzheimer’s Indonesia and the Regional Director of Alzheimer’s Disease International Asia Pacific. She has more than 20 years’ experience in public health, public/private partnerships, and communications. DY is an Ashoka Fellow and a Salzburg Global Fellow. DY and Rajiv met at the Salzburg Global Seminar on “Changing Minds: Innovations in Dementia Care and Dementia-Friendly Communities”.
DY: My most recent and extended experience as a caregiver is with my mom, who suffered from dementia. She started showing symptoms twenty years before she was actually diagnosed. It was because of my mom’s then-unexplained behaviors that I left my home country of Indonesia for almost fifteen years. I spent ten years in the United States and five in Australia. I wasn’t finding peace at home at all, and it was just hard to be there while my mom was having this seemingly inexplicable breakdown.
In 2009 my dad called when I was working on my PhD in Public Health in Perth, Western Australia. That’s when he told me that my mom was diagnosed with vascular dementia. So my (virtual) caregiving experience started in 2009 while I was still in Australia. I was providing lots of information to my dad, the main caregiver, and my sisters who were helping back home — appointing doctors, doing research, all of that. It was such an interesting experience to play that remote but imperative role. In early 2012, I postponed my PhD and left Australia. My mom was in the latter stages of the disease at this point, so there was no question: I’d go home, back to Indonesia, after fifteen years away and help take care of my mother. The best decision I have ever made in my entire life.
Earlier, I had my first true caregiving experience taking care of one of my friends overseas who was diagnosed with cancer. That’s when I was first exposed to the genuine importance of the caregiver role. All of the feelings associated with it, the emotions you rollercoaster-through, both alone and with them … I’ve gone through it all.
I started off as an English literature major at the University of Indonesia and was working for a TV-radio station in Indonesia. That led me to enroll at Ohio State University’s School of Journalism. I’m a trained journalist, but I also do a lot of research in public health.
So after I started off a career in journalism, I went into working for the U.N., WHO and UNICEF, doing emergency preparedness, pandemic preparedness for avian flu, that type of thing. It’s hard work, but extremely rewarding. I worked in the Humanitarian Development Alternatives industry, which led me to understand the necessity of advocacy and the framework of programming that stands behind it.
After that, as I mentioned, I was working on my PhD in Public Health at Curtin University in Perth, Australia.
My professional skills and perspectives influenced my caregiving efforts in a big way, no doubt. Having medical records, rosters, all those types of things are so important for caregivers so that they can do their very best work for the job at hand.
I can’t stress enough how important it is to have data; medical records and information about the people being cared for. I really encouraged my family and various caregivers who made themselves a part of this experience with my mother to jot down all the details related to her care. The information gleaned will prove itself relevant at one point or another. Knowledge is power, and if that knowledge is out there, why not make it known and available?
Appreciation of that type of knowledge was definitely thanks to my communication background, especially as a journalist, where the research never truly ends.
Your question also makes me think about the time I spent in Western Australia. I was working on my masters and doing my PhD on a study related to skin cancer and the use of technology to improve dietary behaviour for adolescents in Australia. It’s a very “if this, then that” concept. I’ve always been a big fan of Steve Jobs and he has this speech where he talks about connecting the dots. My background and what I’ve done in my life, both professional and personal, really speak to that notion: we must always connect the dots. They’re there to be connected.
It directly led me to start Alzheimer’s Indonesia in 2013, a non-profit organization that aims to improve quality life of people with dementia and their caregivers. In Indonesia, with a population of 250 million, approximately 20 million people are over the age of 60 and an estimated 1.2 million are dealing with dementia, according to a 2017 report by Alzheimer’s Disease International.
I came about the idea because my own quality of life was so adversely affected during my mother’s illness, especially before her diagnosis was given. I wanted to establish a support group for people whose experiences aligned with mine. As far as I knew, or even know now, there’s really never been anything else like it. And amazingly, this has all led to some very in-depth explorations and research around dementia. Caregivers, I’ve found, genuinely need help navigating this very difficult journey. They need it and perhaps even more than that, they deserve it.
When my mom would exhibit a particular behavior or something, I wanted answers: why was she acting this way? What could I do to help? Could I even help? But usually, all I got was confusion. Her doctors couldn’t allocate the appropriate amount of time to explain, for example, one of her behaviors to me. So that experience has motivated me to speak more.
I also work hard to connect people who are having similar experiences, so that there’s a network of support wherein dementia becomes everybody’s business. After all, it has a huge affect on so much of our society, not just on the immediate families of a person with dementia. It affects the people it plagues and their families, yes, but also our greater psychosocial economy. That’s a fact that is often overlooked, but shouldn’t be … can’t be, if we’re going to make progress.
I would tell them that they’re not alone. Not to get trapped in a victimized mindset … to do their best to create quality moments all the time. Avoid those constant internal checklists: “Have I done this? Have I done that?” It’s so important to create quality moments that you’re proud of. Create joy and meaningful engagement wherever and whenever you can.
Interviewed: 22 August 2018, by Rajiv Mehta; edited by Julia Rubano
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