International Women's Day: Letting young dementia caregivers know they are not forgotten

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.
 Ms Melissa Chan founded social enterprise Project We Forgot in 2015, after the death of her father, who had dementia.
Ms Melissa Chan founded social enterprise Project We Forgot in 2015, after the death of her father, who had dementia. PHOTO: AZIM AZMAN

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

In a sudden reversal of roles, she became one of her father’s caregivers, along with her mother, older brother and younger sister. 

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

But her bigger struggle was that she didn’t understand the disease nor why it was stealing her father away.

When the former regional sales director eventually forgot who she was, she even began to doubt her own 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.

“I never knew what dementia was, medically, and how it affects your brain,” said Ms Chan. “Looking back, I would have really appreciated knowing what the symptoms are and how to cope as a young caregiver.”

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. 

An old photo of Ms Melissa Chan, founder of Project We Forgot, with her father, Henry, when she was six years old. She is pictured here with her younger sister and older brother. PHOTO COURTESY OF MELISSA CHAN

Using her own 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 young caregivers who are 39 years and below. “The way young people access services is very different, and we realised that at the time, there was nothing out there that young caregivers could identify with,” she said.

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

Mr Jason Foo, CEO 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 in their lives.

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 are under 65 years old.

"If you think about it, 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 would require more manpower and a bigger platform.

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

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

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

Last Saturday (March 3), it launched an online community networking platform for caregivers.

By providing these tools and services to meet the needs of caregivers, the team hopes to figure out a sustainable business model as a social enterprise soon.

While Project We Forgot has not yet seen any profits, it has earned financial support from both the private and public sector - its only source of funding at the moment.

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 the social enterprise's  long-term future is not an easy one, said Ms Chan.

“There are days when I wake up and wonder why am I not working full-time and getting a regular pay check,” she said. “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.”

Find out more about Project We Forgot: