Memory Café is changing minds about dementia
Initiative to help the illness shake stigma
Some of the patrons at a new café in Cape Town might seem a little forgetful, but they're in good company.
This is the Memory Café, a place where people with dementia can hang out without feeling judged or being treated condescendingly.
"We have to change our minds about people whose minds have changed," said Rayne Stroebel, who launched the concept this week in Hout Bay and hopes to expand it to other communities.
SA does not have reliable statistics on dementia but this is "not necessarily a bad thing", said Stroebel, because once the label is attached to someone it sticks like glue.
The Memory Café is about "bringing dementia out of the closet" and into the world where people can see that those living with dementia are not abnormal, he said.
Too often, those trying to help will focus on "doing" rather than just "being", so the café is about just hanging out.
"We want this to be a supportive environment but it is not a support group. It is just a normal café," said Stroebel, founder and MD of care-home company Geratec.
These types of interventions are becoming crucial. By 2030, there will be 74-million people with dementia worldwide, making it one of the most burdensome diseases.
Medication can alleviate some of the symptoms, but there is no cure, which means new non-pharmaceutical approaches are important.
Brian van Buren, 68, of the Dementia Action Alliance, travels around the world from his US base to fight for the rights of people with dementia.
At the opening of the Memory Café, he spoke about having been an international flight attendant when the symptoms began to appear. "We would land and I would announce the wrong city," he said.
His mother and both grandmothers died from dementia, and he was his mother's carer for seven years before she entered a home.
For many, professional care is not an option, he said, and relatives often have to quit their jobs to stay at home and care for a family member.
When Van Buren was first diagnosed, he was put on medical leave for three years and sank into a deep depression. "I stayed in bed for the first three months feeling sorry for myself," he said.
Every day brings a new challenge: he loses things, forgets what he is saying, and once discovered he had bought four televisions by mistake. But he is a prime example of someone living a full life.
For Laurie Scherrer, who was a high-powered banking executive before being diagnosed at the age of 55, coping is about developing small but powerful strategies that make your day easier.
She has sewn small tags to her sheets to show which way they go on, and because she travels a lot she has pre-packed suitcases with matching clothing inside "so I don't end up in white pants with purple polka-dotted underwear".
Scherrer said: "If I listened to the doctor I would be in a care facility by now. If you have met one person with dementia, you just met one. We are all different."
The back of Scherrer's business card says: "Please be patient with me, I have dementia and may repeat questions, forget what you have told me and take longer to make a decision."
Stroebel, who is working on his PhD in dementia studies, is doing research for the international Stride Project, which is working on responses to dementia in developing countries.
His initial experience in the poverty-stricken areas of Imizamo Yethu and Hangberg in Hout Bay is that people in low-resource settings are supportive of those with dementia.
Also, without a formal diagnosis, many of those people are not stereotyped by their neighbours and families.
Dementia SA encourages the families of those with dementia - especially those members doing the caring - to make sure that they are getting enough care and support themselves.