Cause to Remember
Project We Forgot is a community platform that informs, supports and empowers young caregivers to patients suffering from dementia.
BY SASHA GONZALES
PHOTOS PROJECT WE FORGOT
elissa Chan was just 14 years old when her father was diagnosed with early-onset Alzheimer’s at 53. Over the next decade, the family struggled to deal with his deteriorating condition.
Caring for her ailing father in his final years was a journey that left a deep impact on Chan. This moved the Singaporean – who had worked in the finance, hospitality and start-up industries – to found social enterprise Project We Forgot (PWF) in 2014. Her mission: to let caregivers of dementia patients know they are not alone.
The organisation was initially set up for caregivers aged 39 and below, as Chan noticed a gap in dementia care services catering to younger people. It has since shifted its focus to serve caregivers of all ages.
SUPPORT THROUGH SHARED KNOWLEDGE
PWF provides support, knowledge and access to services to its burgeoning community of about 3,000 caregivers around the world. The Singapore-based organisation does this through online and offline channels – via its website and social media posts, along with workshops and training at schools and organisations such as the Alzheimer’s Disease Association Singapore, Youth Corps Singapore, as well as the Ang Mo Kio Family Service Centre.
By joining the community, caregivers have access to personal stories and information on the condition. They are also able to connect with others like themselves for support, as well as participate in local conversations and events through the website’s recently launched networking platform. To drive awareness and build intervention resources for the community, Chan and her team collaborate with various players across the public, private and non-profit sectors. In Singapore, this includes organisations such as the Agency for Integrated Care and National Youth Council.
Overseas, PWF has made a positive impact by working with global associations like Alzheimer’s Disease International and the World Young Leaders in Dementia (WYLD) network. Chan serves on the steering committee for the WYLD network, driving the development of innovative dementia solutions across disciplines and borders.
“Working with these international partners has given me a better understanding of the best practices at other organisations,” she says. “It has also helped me see how differently dementia is viewed around the world. For example, caregivers from Western countries tend to be more open about sharing their experiences, whereas those from Asia may not be as forthcoming. It’s by talking about our experiences that we find it easier to access help.”
At the same time, engaging with these overseas partners has also made Chan realise that all caregivers have one thing in common.
“They all feel some level of guilt, like they’re not doing enough or aren’t there for their loved ones with dementia. This is the common thread that binds us,” she says. “We need to first realise that feeling this way is more common than we think. Then talking about how we feel with other caregivers may help alleviate some of the emotional weight.”
Apart from its partners, PWF has a network of volunteers who help i n several ways, from creating content for the website to conducting research and marketing the platform. Among PWF’s key overseas volunteers is Yangon-based Slovakian Lucia Loposova, who decided to work with the organisation because its focus on supporting families of dementia sufferers in a “human” way resonated with her on a personal level.
As vice-president of Erasmus Mundus Association (EMA) – an international non- profit organisation for students and graduates of Erasmus Mundus Master and Doctoral programmes – Loposova later decided to tap into its network to get additional support for PWF. This comprises researchers and professionals who are involved in the fields of public health, psychology, social work and innovative medicine.
“In doing so, we’re linking PWF with individuals who do research on Alzheimer’s or who have connections within the field, and would like to collaborate with PWF,” she says.
“ Caregivers all feel some level of guilt, like theyʼre not doing enough or arenʼt there for their loved ones with dementia. This is the common thread that binds us. ”
Melissa Chan, founder of Project We Forgot
CHALLENGING WORLDWIDE STIGMA
Chan is encouraged by her meaningful associations with people in different countries, from caregivers wanting to bring greater support to their local communities, to professionals interested in learning about dementia and contributing to the platform.
According to her: “The friendships made through PWF, WYLD and with our international collaborators have enriched the lives of all involved.” Indeed, being connected by technology has helped to open people’s minds and foster a more positive outlook towards dementia.
For instance, when they found it difficult getting Singaporean caregivers to share their experiences – due to the stigma surrounding dementia – the PWF team reached out to the global community through Instagram. Communicating with these caregivers over Skype, they were able to share stories of hope on their website.
Reading these stories helped those in the local community realise that they were not alone, and motivated the more reserved members to open up about their experiences too.
And from there, the community grew.
“It’s through engaging with these caregivers, forging friendships with them, and letting them know they are not alone, that have helped us thrive and accomplish what we have set out to achieve,” says Chan.
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