A Zambian Practitioner's View of a Western Dementia Dilemma

By Mataa Moses Mataa, MD

I was intrigued by Winter's End and its content: the nonfiction story of a man with early onset Alzheimer's determined to end his life. The book, built upon input by dozens of North American and European palliative medicine practitioners, centers on how and when a person could choose to die. While the narrative was compelling and I empathize with the challenges faced and the decisions taken, its narrative is not relatable to the patients I care for, or my experience with people living with dementia in my country, Zambia. 

In Zambia, most people will not have the privilege of receiving the type of care described, nor do they have the support systems available to most people in the United States and other developed nations. Most people in Zambia will go through their dementia journey without the opportunity to be seen by a neurologist or any other medical personnel with the necessary skills to diagnose dementia. 

Those living with dementia face significant stigma in their community. Many are suspected of witchcraft, which is a very real threat that often results in verbal and physical threats to those living with dementia as well as their caregivers. Furthermore, due to lack of understanding of what dementia is, patients are often neglected by their families because of the stigma—and fear that the condition could be transmissible. 

Health systems are ill-equipped to care for persons with dementia, as more than 65% of health workers believe that dementia is a normal part of ageing. There is no plan to provide care for persons with dementia at a national level, and no inclusion of dementia medications or even home visits by community health workers and social services. 

Despite these very daunting challenges, none of my patients has expressed a desire to end their life. Perhaps this is due to deeply held cultural and religious beliefs pervasive in Zambia, or maybe it's because most patients present in late-stage dementia. 

The author asks about one's right to choose their time to die, but it is the wrong question for dementia care in my part of the world. My patients do not ask me how to take their own lives, they ask, "How can you help me remain present for my children and grandchildren. How can you support me to remain part of my family?" Caregivers and partners ask how they can support their loved ones during this illness. People just want to understand what is happening; they ask what they could have done to prevent such a disease, and what they can do to get better. Adult children feel they may be failing their parents, and parents also feel that they are failing their children. For those families who have the opportunity to get a formal dementia diagnosis, the conversations are most often around how a person living with dementia can be supported as a part of their community and families. 

Perhaps there will be a time when persons living with dementia in Zambia will ask my advice on choosing their time to die, but that is not currently the case. The book is clearly written for Western populations that have developed enough systems of care that allow people to focus on what they perceive as higher ideals of being and not just survival or access to care. Unfortunately, the book is deaf to the reality of dementia care in most of the rest of the world.

Dr. Mataa Moses Mataa is an adult neurologist and medical superintendent at Chipata General Hospital in Lusaka, the capital of Zambia. He is an Atlantic Fellow for Equity in Brain Health, as well as a dementia awareness advocate and palliative care provider. He was an IAHPC Advocacy Focal Point and now serves as the chairperson of Alzheimer's Disease and Related Dementias in Zambia (ADDIZ), which supports people living with dementia in Zambia and is cofounder of Medsearch Zambia.

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