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.
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.
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.
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
“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.”
Project We Forgot 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.
To support their efforts, Project We Forgot 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.”
Watch her video story below:
Read more here.
Source: The Straits Times, 8 March 2018