The children we forgot
Melissa Chan was 14 when her father was diagnosed with early-onset Alzheimer’s. Her journey has taken her on a path to help other youths to understand the disease and find support.
BY: Eleanor Yap
When a loved one has dementia, it often affects the spouse and other adult family members. However, we often forget that in that mix, young children in the family also see the changes that occur in their loved one with dementia. As a result, they may go through anxiety, their concentration and schoolwork may suffer, they may retreat from the situation and they may feel sad.
Ageless Online speaks to 25-year-old Melissa Chan, who at the age of 14, her father was diagnosed with early-onset Alzheimer’s disease. She talks about what she saw and how all this has made her focus on a new initiative she has started called Project We Forgot (PWF), where she helps to educate and give support to youths dealing with dementia:
Can you share about when your father was diagnosed with early-onset Alzheimer’s?
I was about 14 when my dad was diagnosed at age 53. Initially, we were confused because his family had no history of the disease but later the doctors pinned it down to the late-onset of effects caused by a car accident he had when he was in his 20s. It resulted in him being in a coma for a week. The extent of the damage to the brain at that time did not seem to have covered the possibility of him having this illness hit him. He battled through the illness for 10 years before passing on in 2014.
I have a lot of respect for my mum. Raising three kids, holding a job and being a caregiver was hard work. The disease really affected the entire family and it often sucks you dry mentally, physically, emotionally and financially. As kids, we had to get through understanding the illness on our own as it progressed. We weren’t taught this in school and there wasn’t anyone that came knocking on our doors to educate us. It was first understanding what was happening, coming to terms with it, learning as we went along through my dad’s progression in the illness and trying to help my mum take care of my dad. I think even my mum had a hard time trying to understand it so it was hard for her to educate us on it.
That must have been tough as a young person dealing with it. How did you and your two siblings deal with it? Did you have anxiety, retreat to your own world, etc?
We didn’t really talk about it as a family, especially at the start. I guess we all had different ways to deal with my dad’s illness. It was easier for me to speak about it to my friends (maybe because I didn’t want to add on to the emotions that were happening at home) but after awhile, I realised that I didn’t want to put them in a spot of having to “be there” when they had no context or idea of what the illness was. So I basically retreated and dealt with it on my own.
Could you share two instances with your father dealing with the disease that you will not forget anytime soon?
I could tell that my dad was struggling with a lot of confusion in the initial stages. My father used to be the navigator and driver for the family but one day he was caught in the crossroads and didn’t know which road to take although it was a familiar route. Seeing that confusion and anger at himself pained me. That was when I realised that he couldn’t do the things he could before.
He was also always fleeting between two states of mind. One of confusion and the other of clarity. There were times when I could tell that he knew he was losing his memory but was not able to do anything about it. And then there were times that he forgot that he was losing his memory and was thrown into confusion, lost and anger.
Tell me more about the site and what made you decide to do it. I understand you were doing well in your career?
When my dad passed on, I started questioning what I really wanted to do in life. I’ve always believed in having a purpose behind the work I do and I felt like I needed to live better for him. I didn’t find the answer but I knew where I was, wasn’t where I wanted and was supposed to be, so I left.
I continued in marketing/digital strategy but moved on to helping start-ups both professionally and personally. It was through this phase and also while helping a friend with her start-up, that the idea of using my skills to raise awareness for a cause made so much more sense and gave what I did so much more meaning.
I lived my life seeing my dad go through and decline in an illness that I feel the world hasn’t fully gotten to know. Especially in Asia, knowledge about Alzheimer’s is not as widespread as compared to the US or UK. When I went through the journey with my dad, I never had anyone my age that I could turn to outside of my family. There wasn’t support. There wasn’t a platform I could go to to make me feel like there were others who understood what I was going through.
That’s the whole basis of PWF. We are a initiative aimed at building a global community of support and change by reaching out to the generation of digitally-savvy and socially-actives.
It has already been launched?
Yes, we launched it last week. The first phase of the site will give each user a virtual page of their own where they can personalise their stories through creative mediums like journaling their experience, posting photos or collections, creating music mixes and films, etc. This site provides a voice for sharing with the general public about the illness and functions as a support system for caregivers to be able to identify and relate to other caregivers’ experiences. On a whole, we hope this will provide support for all caregivers, but our messages are targeted at younger caregivers aged between 18 to 45. All these are driven at eventually creating a stronger voice in Asia.
Everyone draws meaning differently from the different situations in their lives. I have always wondered what the meaning of my dad’s life was and it is through this initiative that I have found that. His life inspired me to do this so I can inspire people that are going through the same situation as I did. When this realisation hit me, I knew I had to do it. Cutting the safety net (the security of a stable, paid job in the corporate world) definitely pushes me to work harder and faster but it also carries a lot of insecurity and risk – something I am willing to take at this point because of the purpose behind the work that I do.
In phase two, we hope to integrate and create more functions that will allow users to support one another digitally.
How will the site make money?
It is extremely important to me to be able to control my ability to sustain the work I am doing and this is something that has always been on my mind. As of now, there are no solid plans, but the goal is to build the first phase of the site before diving into plans for sustainability.
What do you hope to achieve with the site? Where will content be coming from? How will you get eyeballs to your site as youths compared to those older are challenging to reach out to?
An overarching goal is to have the site do two things:
1) To be a support for caregivers – Content will come from the caregivers themselves. In phase one, they can share their journey on their own virtual page, which forms part of a collection of stories that helps to create a community of support.
2) To raise awareness and educate the public – People are drawn to real experiences and PWF forms a collection of these real experiences to share with the world. Every page/caregiver’s journey acts as a voice to help raise awareness.
With the amount of articles and marketing noise online, people only make time for subjects that interest them. Most people switch off when they see “Alzheimer’s” online, especially when they have no relation to the illness. Dry, lengthy, boring, serious. We are changing that. We do the work for the public. We take data/fact articles on the illness and break it down into very digestible and interesting formats. This way of messaging is adapted also to hit the younger crowd better.
You are targeting the youths. Why are they important to reach out about Alzheimer’s information?
The illness is a growing epidemic. By 2030, just in the US alone, 72 million baby boomers are at risk. That’s just in the next 15 years and that figure hasn’t even accounted for the rest of the world! We all have a parent and we all run the risk of getting it. One way or another, this illness is going to affect our generation drastically. Either us as a patient, a caregiver or the different sectors having to support the cost of the illness (e.g. healthcare/Government).
Also, with the prevalence of early-onset Alzheimer’s, it equates to the growing number of young adults juggling the confusion of the illness, the role of a caregiver, and being in the life phase of opportunities and commitments (e.g. career/their own family). We come in as a platform of support for this group of individuals. (WRITER’S NOTE: In Asia alone, there are a total of 4.3 million people with dementia, and this is expected to increase to 19.7 million by 2050. Particularly, the prevalence in Singapore for those aged 65 years and above is currently about 40,000, according to the Alzheimer’s Disease Association (ADA) in Singapore. Numbers are expected to increase to 187,000 by 2050.)
Are you the first local site doing this work and targeting the youths?
Yes. There are some sites that support caregivers but nothing out there that dives into focusing on this particular illness and the younger age group of caregivers.
ADA is campaigning for a dementia-friendly Singapore. What does dementia-friendly mean to you and do you think we currently are dementia-friendly?
A dementia-friendly community, to me, is one that is aware, understands what the illness entails and is educated to a basic level. Singapore does not appear to be at that point yet. I mean, I speak to friends and people my age and some of them have to google what Alzheimer’s is. That says a lot.
In my opinion, being aware and being educated are two very different things. There are those who are completely unaware of the illness or the fact that Alzheimer’s is one of the biggest forms of dementia. And then there are those who have heard what Alzheimer’s is but that’s it. No education on signs of it, the steps to take and things to do when they meet someone along the streets with these signs.
It definitely would require a lot of attention and focus on the subject from the Government to help Singapore reach that point. Change is a collective effort and I think that the best way is to start with organisations that can make a difference before moving down to the general public. I am not sure how long it will take but with the right efforts and Singapore’s receptivity to campaigns, I am sure it will happen.
What have been some challenges so far doing your initiative?
I think a huge part of getting work done is the way I communicate with my team. We are a global team of people and with everyone working out of their own time on a pro-bono basis, things are bound to move a bit slower. So the challenge is in pushing for stuff to make sure we’re on track with timelines. Having only gone full-time into this recently, another challenge is in looking for extra help locally with interns and individuals interested in the cause.
But just like any entrepreneurial journey, this has been and will continue to be a rollercoaster ride, one that I definitely want to take. I can’t even begin to list out the bunch of great people I have met along the way! At the end of the day, it is all about trusting the process, making impact on my journey and drawing from experiences.
Where do you hope to achieve with the site in say five years’ time? And what also do you see yourself doing then?
In five years, I vision PWF to have an influential global footprint, with an exponential growth in the number of caregivers we are able to support on our site. My work with Alzheimer’s will always be important to me, but I would also want to put focus on using my journey to inspire more people to be changemakers.
How does your family and friends feel about what you are doing?
“Are you going to make money out of this?” That’s one of the most asked questions since I have embarked on this journey. Some days, I myself am still surprised at the route that I am in now. So I am not surprised when my friends are shocked when they find out. It takes awhile and not everyone understands it, but the close ones that matter and my family are extremely supportive of what I am doing, so that is enough.
Usually people in your age are doing other things that may not be socially impactful. What advice would you give to others in your age group and younger to do something for the community?
I am glad and am blessed to have found my thing that I am meant to do at this age because I know of many people that go through their entire lives and still don’t know what it is. I hope that people give themselves the opportunity to find theirs. It doesn’t just fall out of the sky. You usually have to go through quite a bit to get to the point of realisation.
But my advice when you do find it is to chase it with all that you have. The switch is not going to be an easy one, but take the risks and trust yourself. You only live once. Don’t spend your life chasing things that don’t hold meaning or make a difference to the world around you.
What is your wishlist related to the disease besides I am sure having a cure?
For stigma to be removed and the general public to be aware and educated. This would help in the support and acceptance of caregivers and the patients themselves in early stages.
For the caregivers to educated on the importance of balance and that it is ok to take time off for themselves.
Could you give three pieces of advice to young children dealing with a loved one with dementia, either their parent or grandparent?
1) Talk to your loved ones with dementia – It’s easy to loose track and forget that they are there sometimes – especially when they seem to be “in their own world”. But just be there and speak to them even if the conversation goes round in circles because you will be surprised at the moments of clarity that you might find.
2) Remember them for who they were and not who they are now – It will feel hard to be around your loved one dealing with dementia – especially when they throw their temper at you. But remember that they would not have chosen to act this way if they had a choice. What you see is caused by the confusion that is happening within them.
3) Find your community – Talk about it. Go to support groups, be around people that understand your journey. It will help you better understand what you’re going through and prepare you better for what is to come. (WRITER’S NOTE: The Alzheimer’s Society in the UK has some information on its website on how to explain dementia to children and young people – www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=108.)