World Alzheimer's Month: How UAE’s only social enterprise serving seniors is giving them a chance at ‘normalcy’

To forget and relive



By Fiza Natoo

Published: Thu 29 Sep 2022, 8:19 PM

In 2013, a family reached out to Dubai resident Desiree Vlekken. The patriarch of the family had passed away two years ago and the matriarch, who was 67 years old at the time, was going through depression. Her memory had been declining as well, but the family attributed that to her grief and age. Even if they suspected that it was an onset of Alzheimer’s Disease, they weren’t completely sure. An Internet search alerted them to 4get-me-not as the only Dubai-based platform that would help them access information on Alzheimer’s. “Learning from my Dad’s experience, I first suggested they seek proper diagnosis first.” The family heeded to Desiree’s suggestion and discovered that the matriarch was indeed afflicted by Alzheimer’s Disease. “We began inviting the family over with the matriarch for our events. Our senior group cherished each and every moment with their mom to a point she could not walk and remember our names. 4get-me-not was with this family’s journey till the end when their mom passed away in April 2022.”

A Filipina living in Dubai, Desiree started 4get-me-not for reasons that were personal. Her father had Alzheimer’s and “caring for him from a distance was tough”. “I had no idea about Alzheimer’s Disease, and this started my obsession to know more about the condition. I became a voracious reader on dementia, Alzheimer’s and other age-related illnesses. I connected with geriatricians, psychologists, psychiatrists and neurologists in Dubai and other emirates. I also befriended medical students who would eventually become initial volunteers for 4get-me-not. I was desperate for answers to such an extent that I obtained a special pass to visit a medical library,” recalls Desiree.

Even with this wealth of information, Desiree discovered it was difficult to comprehend the why of it. And that led to the formation of 4get-me-not, a social enterprise that would collate and disseminate information on Alzheimer’s, while engaging its patients constructively in various creative pursuits, one that has been recognised by Alzheimer’s Disease International (ADI)as well as World Health Organization.

“4getmenot, as a platform on Alzheimer’s-related information, has to be on top of the game. As our audience reach is continuously increasing in the UAE, access to latest news, researches and best practices on AD and dementia was imperative. We sought international accreditation/membership through ADI. A prerequisite of this was for me to pass the ADI’s two-year programme ‘Alzheimer’s University’ in London, UK. Fortunately, 4get-me-not got the accreditation in a year,” says Desiree. “Being part of this global federation enabled members like us to work with other international groups, such as WHO and Dementia Friends (UK).”

Today, most of 4get-me-not’s events are scheduled in the morning between 10 am and 12 pm, because “sundowning or late day confusion and restlessness becomes an issue with Alzheimer’s patients”. What exactly happens, as Desiree explains, is that as the day progresses, it upsets the patient’s internal body clock, causing biological mix-up between day and night. “It’s a challenge to calm them down, but we have also learnt coping strategies wherein the group goes autopilot and sings and dances with the patients. It seems to help calm them down.”

Since most patients have difficulty in communication and experience loss of language, 4get-me-not helps them participate in art and music, disciplines that demand creativity. “When we paint as a group or pump up the music, they suddenly connect, feel happy and loved,” she says. No wonder then, the social enterprise has close to 500 senior citizens, all above 60 years of age, with some of them also suffering from other age-related illnesses.

Isolation is possibly the worst thing to happen to an Alzheimer’s patient. And yet, the pandemic witnessed lockdowns, and periods of social distancing, which affected their interactions considerably. Desiree says the social isolation did affect Alzheimer’s patients, but the volunteers made it a point to keep in touch online. “4get-me-not conducted virtual meetings on book reading and writing personal essays. We also had cooking demos and competitions, including BINGO. Even the caregivers joined us.”

The caregivers have a particularly challenging time handling Alzheimer’s patients. Not only do the loved ones cease to exist in a patient’s memory, the physical and mental degeneration means they need to be looked after all the time. Desiree says that the caregivers of senior citizens who are part of the 4get-me-not family are always eager to participate in activities because they find respite and a source of happiness in them.

This respite is much needed, given the stigma that continues to revolve around Alzheimer’s. “This is the stigma of rejection. There is fear to face other seniors, and we notice many patients stop interacting with others and going out, fearing they’ll be judged and rejected. “We had a senior, who was not in usual contact with other people apart from his family. When he first joined, he was very agitated and wanted to leave immediately. With our homely vibe, he grew to like us and now wears a smile every time we meet,” says Desiree. “He can also pronounce my full name too.”

The said patient has now become 4get-me-not’s “rockstar”. His social skills have improved dramatically and he appears “happier”. “He sings Que Sera Sera with great aplomb. He also participated in our summer internship programme during summer at Medaf Art Studio. He interacted so well with the kids that he probably has a fan club now.”

Going forward, a key initiative of 4get-me-not will be Memory Café, a dedicated, safe and inclusive space where seniors, Alzheimer’s patients and caregivers hang out, support each other and socialise on a regular basis. “Ideally, the café will train staff to be senior-friendly and experienced in working with people with Alzheimer’s or dementia,” says Desiree. But Desiree wants to fine-tune the idea further by training the seniors, Alzheimer’s patients and caregivers to operate the café as well. “It will be open for all, especially for kids and teenagers, to enable us bridge intergenerational gap,” she explains. “The younger generation should be prepped for the tsunami of Alzheimer’s cases coming their way.”

fiza@khaleejtimes.com


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