Have dementia? Don’t forget to dance
First, you might hear snatches of music. Followed by bursts of laughter. Some days, you might hear singing, usually to oldies from the 1960s.
If you walk towards these sounds, you might be greeted by the sight of a large group of older men and women, accompanied by younger faces — perhaps their children, siblings, or helpers.
They sing, they dance, they move with uninhibited joy, or they sit contentedly and watch the action, chatting with others. It’s a session of Memories Cafe in action, and the mood is festive.
Yet celebration was probably the last thing on the minds of these attendees, when they, or their loved ones, first received the diagnosis — dementia.
Just ask Belinda Seet, whose mother, Katherine, was diagnosed in 2011, with Alzheimer’s Disease, a type of dementia.
“In the beginning, I cried a lot because you know on TV and everywhere, you always see it's like this person losing themself, this person not remembering,” says Belinda.
But she rallied herself, aware that she had managed to care for her late father, when he had cancer. “Once I calmed down, I decided there and then that I want to make my life with my mom as happy as possible. I want to make as many memories as possible.”
“When she goes, the memories are for me.”
Dementia is an illness that causes brain cells to die at a faster rate, leading to a failing memory, impaired intellectual functions, and personality changes. According to Alzheimer’s Disease International, every three seconds, someone in the world develops dementia.
In Singapore, it is estimated that over 45,000 people are affected by one form or other of dementia, or 6.2 percent of the elderly population. By 2050, this is expected to grow to 187,000.
There is currently no cure for dementia, but there is medication for Alzheimer’s that can temporarily ease symptoms and for some, slow down the disease’s progress.
Advised by the doctor to keep her mother’s brain engaged, Belinda devised activities to hold her mother’s interest: “I know that my mum loves knitting, so I come up with little plans, and then when I feel that she’s already sort of used to a certain pattern, I change the pattern. And that helps her.”
She also continues to holiday with Katherine, and makes a point of bringing her along when she meets friends.
And then, there’s Memories Cafe.
Started by Dementia Singapore, formerly known as Alzheimer’s Disease Association, in 2014, it is a weekly affair that sees persons with dementia and their caregivers take part in activities to engage them cognitively, such as, singing, drumming, as well as dance and movement. This is followed by an hour for lunch and socialising.
Activities are held in dining spots accessible to the general public — to heighten the visibility of those with dementia, and chip away at some of the stigma surrounding the disease. Staunch supporters of the programme include Over The Counter at the National Library, the Soup restaurant chain, and Food for Thought at the National Museum of Singapore.
“Many caregivers, when they take care of a person with dementia, the focus at home is on basic needs — have they taken their medicine, did they take a shower, do they have enough food to eat?” says Ruth Wong, programme executive at the organisation.
“The physical needs, most of the time, are being taken care of. But not the social, emotional needs.”
“So I'm hoping that Memories Cafe will bridge that gap and help persons with dementia and caregivers have a good time together. And through that, it may renew their relationship,” says Ruth, an energetic presence at virtually every session.
Belinda and Katherine have been attending Memories Cafe sessions for about two years. “It's actually a wonderful event for Alzheimer's patients, as well as caregivers. Because caregivers need a break, as well,” says Belinda, who also volunteers at the sessions.
“There are so many other caregivers around, we all sort of know each other, we talk to each other, we ask each other for information, help each other. It’s like a family.”
At the same time those with dementia, when “they see other people like [them], they don’t lose hope”.
Lee Yeong Wei, who has been facilitating Memories Cafe sessions for two years, puts it this way: “It's mainly to have an hour of activity, to spend time together, to share laughter, to play, sometimes, just to have a moment to be silly.”
Society tends to treat people with dementia and the elderly with kid gloves, fearful that they may hurt themselves, but sometimes “niceness is very limiting”, says Yeong Wei, a dance professional by training.
“When you say, ‘Don’t do this’, ‘Don’t do that’, you create a lot of fear, and there is already a lot of fear in them. But what about working with the fear, what about facing the fear?”
“My approach in Memories Cafe is that whatever trouble it is, we will try, we will do. That is why we are here. It’s not to make things easy, it’s to face the difficulty.”
His biggest takeaway after working with people with dementia for two years: “The word ‘dementia’ becomes less and less important for me...I get to see past dementia and see who they are.”
Points out Belinda: “When people hear ‘dementia’, ‘Alzheimer's’, everyone freaks out, and they always feel, ‘ah oh no, oh no’.”
But when they chance upon Memories Cafe in action, their perspectives change. “You know, it is not so bad after all, there are things to look forward to. Even if you have dementia, it's all right,” says Belinda.
Sometimes, Katherine objects to going out with Belinda. “She always tells me, ‘But I’ll forget again tomorrow. I won’t remember. I go back, I won’t remember.’”
“I say, ‘It’s ok, because tomorrow is a new day.’”
This story has been updated to reflect Alzheimer’s Disease Association's change in name to Dementia Singapore.