Alzheimer’s patients misunderstood and mistreated
MPUMALANGA – “I remember the last time my mother disappeared. People from a nearby community found her walking alone in the middle of the night naked. She couldn’t remember her own name and because she was naked people thought she was a witch. They wanted to burn her alive.”
This account of her mother, who has Alzheimer’s disease, by Annah Mkhonto from Mangweni in Nkomazi is just one of many similar stories about the misunderstanding of mental illness, and lack of access to care, in rural areas around South Africa. While the nation’s attention has been caught by the Life Esidimeni tragedy over the last few months while the arbitration hearings revealed horror stories about how mental health care users were treated, another Esidimeni has been quietly brewing outside of urban centres for decades.
“Before the Alzheimer’s disease took over my mother’s life she was kind, warm, caring, loving, supportive and always funny to be around. But to people who knew her, all those good qualities are now just a memory. At first, we noticed her mood swings. She was always confused and had difficulty having even a small conversation,” Mkhonto said, describing the early onset of the disease.
“Then she could not recognize familiar places or remember names and she would disappear for hours and be brought back by strangers,” Mkhonto said. The last disappearance ended with the local community wanting to kill her for being a witch.
“People wanted to burn her alive. But by the grace of God a Good Samaritan was able to reach us in time. We got there and explained her condition and they agreed to free her.”
But Mkhonto is not the only rural villager with a horror story. There is lack of proper information about Alzheimer’s disease, a common belief that strange behaviour is an indication of witchcraft and families resorting to extreme and sometimes inhumane methods to control or subdue Alzheimer sufferers or keep them from roaming away.
People with the condition are often humiliated in public, abused, neglected, stigmatized and labeled as witches by their families and society.
Alzheimer’s is a disease which affects mostly older persons over the age of 65. So far the causes are not well understood and there is no cure.
“There is the misconception that Alzheimer’s is a white people’s disease because black people believe that a strong sangoma can cure them of the disease,” said nursing sister Nomsa Mabaso.
Sphiwe Khoza also watched as her mother contracted Alzheimer’s and her health and mental condition started deteriorating.
“For months we lived with our mother and her condition without knowing what it’s called. Only recently a doctor told us it is called Alzheimer’s disease. Prior to her diagnosis, we noticed the sudden change of behaviour, like forgetting names and doing strange things. Because my family was surrounded by many people with different views, I remember some saw her behavior as someone who was bewitched,” said Khoza.
“It was bravely suggested that we should go to a sangoma because only a sangoma would be able to properly treat her sudden strange behavior. So we took her to a few sangomas, but no one was able to treat her condition. Things kept getting worse and worse. Even though she’s our mother and we love her so much, communicating with her was sometimes overwhelming. Each time it was like you were talking to a different person, someone you have never even met,” Khoza explained.
Mabaso said people with Alzheimer’s disease could start experiencing the following symptoms: confusion; a poor short-term memory and an inability to remember very recent events like what they had for breakfast; mood swings from happy to sad to angry and then difficulty in using their usual words and language.
Msesi Sibiya, a project manager from Sileth’Impilo, a health and home-based care organization in Ermelo, said: “By working together we can protect old people with Alzheimer’s disease and educate our communities about the condition”.
Sibiya said many people with Alzheimer’s were regularly abused because people did not understand their condition and because they were vulnerable.
“There are cases where you will find families with persons with Alzheimer’s being isolated by the community because the community believes the person is a witch,” said Sibiya.
“Even though there is no cure for Alzheimer’s disease we encourage people to make sure that if anyone they love shows any signs of the condition, to bring them to the clinic for assessment and management.”
Nurse Mabaso said once a patient had been diagnosed with Alzheimer’s it was important for their families to step in and help keep the person’s mind stimulated and physically active.
“Show them pictures of family members and reminding them of the names can help a lot. And it is also important to encourage them to eat a healthy diet,” Mabaso said.
She said myths about Alzheimer’s disease included the belief that only a sangoma could cure the illness; only old people could contract it; a belief that depression causes Alzheimers; the assumption that Alzheimer’s and dementia are the same diseases and that Alzheimer’s is caused by genetics.
“We see families struggling to deal with Alzheimer’s patients. In some cases, the abuse can go as far as families or caregivers physically forcing people with the disease to do something against their will. Some are being kept locked up in a room and being given medicines to keep them sleepy and under control,” said Sibiya, calling for more awareness programmes to promote an understanding of mental illness.
An edited copy of this story was published by Health24.