According to the Alzheimer’s Disease Association, the number of Singaporeans afflicted with Alzheimer’s rose from at least 20,000 in 2006, to over 40,000 in 2016, excluding thousands of more unreported and undiagnosed cases. Other studies estimate that 1 in 10 Singaporeans aged 60 and above have Alzheimer’s.
Alzheimer’s is the most common form of dementia. This mental illness – brought on by protein denaturation and cell degeneration – begins with symptoms like memory loss, increased difficulty with basic daily tasks, as well as losing a sense of time and location. Statistically, persons above the age of 60 are more susceptible to this disease.
However, Melissa Chan can attest that Alzheimer’s is not a symptom of ageing. When her father was diagnosed with this debilitating disease, he was barely in his 50s.
While Singapore’s expenditure on dementia care is estimated to be at least $532m a year, the epidemic’s total burden on the economy – including the treatment of related diseases like hypertension and depression, as well as loss of income – is estimated to total up to a whopping $1.4b annually.
As being a professional caregiver is widely viewed as a dead-end job that requires one to get his or her hands dirty, the industry’s handful of trained professionals are expensive to hire. As such, caregiving responsibilities are often shouldered by immediate family members.
Melissa divulges that beyond the patience, time and effort that this disease exacts from a patient’s loved ones, the caregiver also often experiences guilt – guilt when the caregiver wants to go out rather than stay home with the afflicted person, and guilt that if the family member had done certain things differently, dementia might not have befallen their loved one – apart from acute loss as he or she helplessly watches a loved one waste away.
After her father’s passing, Melissa, a former hotel and start-ups executive, made the decision to start an organisation that would lend support to caregivers, on whom the toll of Alzheimer’s is often the greatest.
In His Honour
“Project We Forgot is meant to engage young people with real stories whose characters are not anonymous and whose realness is not toned down,” elaborates Melissa of the social movement that she now works on full time. “We especially seek to engage young caregivers via content that they can identify with.”
“Usually when caring for dementia patients, family members are at risk of emotional burnout,” observes trained psychologist Darren Cheng, who now runs Direct Life Foundation, which supports elderly persons throughout Singapore through activities and giveaways. “Sharing with others who understand and are going through the same situation as them always helps to alleviate emotional stress.”
“Doctors might be able to provide medical opinions, but the loved ones of an Alzheimer’s-stricken patient are often at a loss as to what to expect emotionally,” Melissa adds. Her father gradually forgot who she was as his dementia progressed.
“Project We Forgot is meant to focus on the well-being of the caregiver and an understanding of different facets of Alzheimer’s. My goals are public education about this illness and support for guilt-riddled young caregivers,” she elaborates about her passion project that caught the eye of, and was recently highlighted by, The Best of You movement by biscuit manufacturer Julie’s.
Melissa compares how problems faced by children of dementia sufferers in the west generally differ from those in the east. “In western countries, children move out by the time they are 17 or 18, so they feel a sense of guilt for moving away from their Alzheimer’s-stricken parents or a need to move back in with them, whereas in Asian countries, it’s a bit different – children are pained by losing their parents bit by bit, as well as their social lives. They drop opportunities for the sake of their parents, and friends might not understand when they no-show social gatherings.”
“Not just caregivers, but many of us tell ourselves ‘I should slow down and I should take a break’, but do we know how to?” Dr. Jasmine Siang of Heart-to-Heart Psychotherapy asks. “Stigmas that surround caring for dementia sufferers come about because these roles are uncommon and aren’t well understood.”
The Project We Forgot website is a tapestry of personal, unminced stories. Melissa’s own story started at the age of 14, when her father was diagnosed with Alzheimer’s type dementia at 54. From constantly looking up to her dad, she experienced a reversal in parent-child roles, and had to fulfill adult responsibilities from a very young age.
“I would feel emptiness, guilt and anger, as he gradually forgot who I was,” she recounts. “As Alzheimer’s denatures the brain, it can change a person. From tame and quiet, my father became temperamental. He even went missing once from the office of our family business where we’d left him. The police could not do anything about it when we tried to report him as a missing person within the first few hours. Thankfully, he somehow found his way to our block after a few days, which is actually far away from the office. He was seated in an old sofa under the flats, which we realised he must have attached himself to because it looked very similar to a sofa that we used to have.”
A Community of Friends
Project We Forgot lends support to young caregivers via an online network. “I want Project We Forgot to connect young people and provide programmes catered for them,” Melissa discloses. “There were hardly any Singaporeans willing to share their stories at first, perhaps because sharing about unfortunate events is stigmatised in Asian culture. I started by publishing stories written by dementia caregivers living in the United States, who would write their individual accounts as a coping mechanism. After reading these stories, more Singaporeans have come forward to share their experiences, and some have broken down when they finally got to tell someone about their personal hardships.”
Melissa shares, “I want Project We Forgot to eventually have a sustainable model and organise awareness activities.”
Melissa’s father was initially diagnosed with depression. However, brain scans taken later on showed that his brain was shrinking. Besides stress and depression, Melissa notes that concussion sufferers are also at risk of Alzheimer’s. “Early treatment makes a big difference, as well as reaching out to young caregivers who need peer support.”
As for what friends of caregivers can do for them, Dr. Siang advises, “let them know that they are no different from anyone else. Being a caregiver is not an unusual role. We will all be caregivers at some point in our lives.”
Photo credits: Lim Mu Yao, whose story can be read here.
Interested parties can join the Project We Forgot network.