People living with Alzheimer’s and dementia in Zambia are commonly accused of witchcraft. A national organization called the Alzheimer’s Diseases and Related Dementias in Zambia is fighting to change this reality.
This article is part of the series Diversity & Dementia, produced by Being Patient with support provided by Eisai.
IMAGE: Anderson Simfukwe (right) at a sensitization meeting in Nakonde, Zambia. Courtesy of Anderson Simfukwe
About 55 million people live with dementia globally. Over 60 percent of them are from low-to-middle-income countries. Dementia cases are expected to triple by 2050. Eastern Sub Saharan Africa, the Middle East and North Africa are expected to bear most of that increase.
In Zambia, a country at the intersection of East, Central and Southern Africa, people widely believe that, despite its prevalence, dementia is a rare condition. According to the Central Statistical Office, Zambia had a population of around 500,000 older adults in 2007. Researchers considered it to be an inaccurate number because older adults in rural areas are hard to capture. During the last conducted census in Zambia in 2010, it was found that people aged 60 and above were more concentrated in rural areas, a part of the country that goes uncounted during the national census, which disputed the 2007 figure.
Science-based information about cognitive health for older adults in Zambia — and about aging in general — is hard to come by. “Studies on aging, and particularly risk factors that may engender social isolation amongst the elderly population in Zambia, are almost nonexistent,” researchers Christopher Chabila Mapoma and Gift Masaiti wrote. The researchers went on to mention that very little information can be found on older adults in Zambia, which translates to nonexistent literature on the topic of aging.
Nongovernmental organizations do the bulk of heavy lifting in the care of aging adults in Zambia, in particular those living with Alzheimer’s and dementia. One of these organizations is the Alzheimer’s Disease and Related Dementias in Zambia (ADDIZ). As a volunteer-based organization operating in the Nakonde District and the 10 surrounding villages around it in North-East Zambia, ADDIZ is trying to improve the way dementia care is administered in Zambia.
“My father was accused of witchcraft when he started
experiencing some symptoms such as wandering and getting
lost in the neighborhood. When he got very sick, we took
him to the district hospital where they diagnosed him
with Alzheimer’s. It was my first time hearing
about this condition and other dementias.”
Anderson Simfukwe, a trained teacher by profession, was appointed as executive director of ADDIZ in 2016.
“I was a headteacher in Nakonde, Muchinga Province, so I used to travel a lot,” Simfukwe said. “I witnessed a lot of cases where elderly people were subjected to abuse and injustices because people did not understand what was happening to them. My father was accused of witchcraft when he started experiencing some symptoms such as wandering and getting lost in the neighborhood. When he got very sick, we took him to the district hospital where they diagnosed him with Alzheimer’s. It was my first time hearing about this condition and other dementias. When the doctors explained the symptoms, it started to become clear to me that my father was not practicing witchcraft as accused.”
Simfukwe’s story is common in Zambia, especially in rural areas. Older persons living with dementia are often accused of practicing witchcraft due to them wandering off into far off places where they are not known.
In some cases, these older adults are nearly lynched by mobs. This is why Simfukwe’s personal experience has made him an asset to the ongoing education around Alzheimer’s and dementia in Zambia.
“When I started to do some further research on dementia, I learned about the atrocities that have occurred against the elderly and people living with dementia in Zambia,” he continued. “Because the majority of people in Zambia don’t truly understand the disease, there are a lot of misconceptions about it. Care for the elderly and people living with dementia is almost not available at all. This is why we came up with the Aged Care and Service Center.”
Through ADDIZ, the Aged Care and Service Center was formed. Currently, it staffs 25 volunteer caregivers who support 950 older adults and their families in the region where ADDIZ works.
“The future of dementia care in Zambia is on the
verge of collapse as more, and more funding is channeled
to political diseases like malaria, while
dementia is invisible in the health space.”
“I and a few colleagues organized ourselves to break the myth that older people practice witchcraft,” Simfukwe said. “It was a huge task but the communities we serve eventually recognized the work we do. We have been able to develop a relationship with the Ministry of Health and Ministry of Home Affairs to whom we report any cases of elder abuse that we find in our work.”
While the organization is primarily based in Nakonde District, it has also spread out to other parts of Zambia, namely, Ndola, Lusaka, Kapiri Mposhi, Kanchibiya and Senga Districts. These districts have representatives who are tasked to carry out their mission. Some of the services provided by the association include:
- Caregiving Meetings
- Dementia Care Training
- Educational events
- Meaningful engagements/activities
- Resources, for example, fact sheets and reading material for patient families and caretakers
- Training for Caregivers
In February 2019, Simfukwe and the Aged Care and Services Center reached out to Swedish Care International, a dementia awareness and advocacy organization, for solutions to some issues they were having. According to Simfukwe, the organization was relying solely on volunteer labor and most volunteers would leave at any time they felt like it, which made staff retention low. Swedish Care International came into the picture and helped Aged Care and Service Center volunteers to gain professional knowledge on dementia.
Among the Aged Care Service Center’s volunteers is a midwife and nurse, Mary Mutambo. Mutambo volunteers her nursing experience for the people receiving support from the Aged Care and Service Center. In May 2016, Mutambo and Simfukwe attended the International Spark of Life Master Leadership Program where they received training on dementia. The training program equipped Mutambo and Simfukwe with the Spark of Life Philosophy, which aims to humanize care for people with dementia.
How does Simfukwe envision the future of dementia care in Zambia? “The future of dementia care in Zambia is on the verge of collapse as more, and more funding is channeled to political diseases like malaria, while dementia is invisible in the health space,” he said. “However, we are equal to the challenge as we are currently lobbying our government to up its game in fulfilling its mandate and obligations on dementia at the national level. Zambia is a member and signatory to the World Health Organization Conventions on health-related non-communicable diseases that include dementia and as such, the Zambian government is duty-bound.”