International Women's Day special

Going all out to help young caregivers

Looking after dementia-stricken dad since her teen years drives her to form support network

Ms Melissa Chan founded Project We Forgot after her father died in late 2014. She started a website and social media accounts to give young caregivers a platform to share their experiences and encourage one another online.
Ms Melissa Chan founded Project We Forgot after her father died in late 2014. She started a website and social media accounts to give young caregivers a platform to share their experiences and encourage one another online. PHOTO: AZIM AZMAN
Ms Chan behind her father, former regional sales director Henry Chan, with her two siblings in happier times.
Ms Chan behind her father, former regional sales director Henry Chan, with her two siblings in happier times. PHOTO: COURTESY OF MELISSA CHAN

Ms Melissa Chan was only 14 when her father was diagnosed with early-onset dementia at 54.

In a sudden reversal of roles, she became one of Mr Henry Chan's caregivers, along with her mother, older brother and younger sister.

She found herself having to skip classes to take care of her father and recalls the guilt she felt at wanting to hang out with her friends, just like any other teenager.

But her bigger struggle was not understanding the disease or why it was stealing her father away.

When the former regional sales director eventually forgot who Ms Chan was, she even began to doubt her self-worth. "I wondered if I was not good enough to be remembered. A lot of questions ran through my head," she said.

Now 28, Ms Chan said it was tough as back then, dementia was not talked about as much as it is now. "Looking back, I would have really appreciated knowing what the symptoms were and how to cope as a young caregiver," she said.

After her father died in late 2014, Ms Chan, who studied at Nanyang Polytechnic and later graduated from RMIT University with a bachelor's in business management, decided to start something that would help young caregivers.

Using her savings, she founded social enterprise Project We Forgot after nearly four years of working in the finance, hospitality and start-up sectors.

She wanted to create a support system for caregivers who are 39 years old and below, and looking after dementia patients.

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When she was 14 years old, Ms Melissa Chan's father was diagnosed with young-onset dementia. Being a caregiver prompted her to set up social enterprise Project We Forgot, which supports a community of caregivers of patients with dementia.

Inspired by the photo blog Humans of New York, she started a website and social media accounts to give young caregivers a platform to share their experiences and encourage one another online.

Mr Jason Foo, chief executive of Alzheimer's Disease Association, estimates that every year, up to 200 young caregivers are thrust into the role because more people are getting dementia earlier.

  • Women social entrepreneurs in the spotlight

  • To mark International Women's Day, 21 media organisations, including The Straits Times, have come together to highlight women social entrepreneurs from across the globe.

    The Women in Businesses for Good project features women who have come up with impactful innovations.

    They include a doctor who launched West Africa's first air ambulance service, an IT professional who gave up her job to raise awareness of disaster preparedness in Japan and a young woman in Germany who is using social media to help those with eating disorders.

    The campaign is organised by Paris-based social enterprise Sparknews, which is led by a group of journalists on a mission to make an impact and improve the world through the reports they put out.

    Other media partners for this project include Japan's Asahi Shimbun, France's Le Figaro, Germany's Spiegel Online and The Philippine Star.

    • For more, go to: http://str.sg/women2018

According to the National Neuroscience Institute, four times as many patients below 65 were diagnosed with dementia in 2015 than in 2011. In Singapore, an estimated 40,000 people live with dementia, and one in 10 is under 65 years old.

ROLE REVERSAL

Role reversal hard for young caregivers to face

"This means the caregivers are also getting younger because the patients are getting younger," said Mr Foo. "Some of them don't even know what to do and they are so used to having their mum or dad taking care of them.

"The role reversal can be very difficult for the child to accept."

This is where Project We Forgot comes in.

After working on the project solo for more than a year, Ms Chan realised she needed more manpower and a bigger platform.

Last year, she roped in chief technical officer Neo Kai Yuan, 27.

So far, the social enterprise has built a community of 3,000 caregivers across social media channels. It has also engaged with more than 200 caregivers who have reached out directly for help.

Project We Forgot also conducts workshops and training at schools and other organisations.

Last Saturday, it launched an online community networking platform for caregivers.

While Project We Forgot has not seen any profits yet, it has financial support from the private and public sectors - its only source of funding now.

Last year, it was awarded a $20,000 grant under the Singtel Future Makers programme, and another undisclosed amount under the Government's National Youth Fund.

While these successes have been satisfying, the journey to ensuring Project We Forgot's long-term future is not an easy one.

"There are days when I wake up and wonder why am I not working full-time and getting a regular pay cheque," said Ms Chan.

"But if you ask me what motivates me, it's learning how I could have been a better daughter to my dad as a caregiver."


• Visit: https://projectweforgot.com and https://www.facebook.com/projectweforgot

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A version of this article appeared in the print edition of The Straits Times on March 08, 2018, with the headline Going all out to help young caregivers. Subscribe