When There is No Plan: Filling the Gap in Dementia Advocacy in Zambia

Atlantic Fellow for Equity in Brain Health Mataa Mataa reflects on his participation in the first dementia symposium hosted by Alzheimer’s Disease and Related Dementias in Zambia (ADDIZ).

^{Above: participants gather for the first dementia symposium in Zambia hosted by Alzheimer’s Disease and Related Dementias in Zambia (ADDIZ).}

On the 5th of August 2023, Alzheimer’s Disease and Related Dementias in Zambia (ADDIZ) held its first dementia symposium in Zambia. The theme for the event was “Capacity Building Through Collaborative Work in Advocacy and Caregiver Support” highlighting the core principles of the organization. Months of planning were followed by what felt like a frantic dash to the finish to make the event happen. Over 200 people registered to attend the event, including students, neurologists, psychiatrists, social workers, psychologists, government representatives, members of the public, and other non-governmental agencies. Most important of all were people living with dementia and caregivers, many of whom graciously agreed to share their stories about living with and caring for someone with dementia. They spoke passionately about the challenges they face and what they would want dementia care to look like in Zambia. For people who are accustomed to attending conferences with thousands of attendees, this small symposium held in a small restaurant on a sunny Saturday afternoon might not be something to shout about, but our team recognized that this was an important first step towards better care and advocacy for dementia in Zambia.

Addressing the Challenges of Dementia in Zambia

The prevalence of dementia across the African continent varies from 2.3% to 20%. However, the true burden of dementia in Zambia is unclear due to a lack of data. The estimated case prevalence in 2019 was 26,055, which is projected to increase to 119,644 by 2050. As a neurologist, I see a lot of patients challenged by dementia on a daily basis. Therefore, the actual burden may be much higher than mentioned above. To make matters worse, knowledge about dementia in Zambia remains poor among patients, families, policymakers, and healthcare workers. The journey to care for someone living with dementia in Zambia can be long and painful with many people living with dementia being told it’s just a normal part of aging. Many have been socially isolated in their communities, even labeled as witches, victims of threatened or actual physical violence. Many persons with dementia are diagnosed with mental health conditions and are at risk of overdose with sedatives and antipsychotics due to a lack of understanding about dementia.

Even for those who do manage to make it into a neurology clinic and receive a diagnosis, the question that I always found myself asking is, “What next?” How do I actually help them? This is what led me to search for local resources to which I could refer my patients and their families. Coincidentally, a little over four years ago, a few other people were asking themselves the same types of questions and were all led to ADDIZ, a small community service organization that had been formed several years ago. But at the time I joined, it dwindled down in membership to just one person. Slowly, over time, we found that there were others, scattered across the country that sought awareness about dementia, looking for someone who could help them understand what was happening to their loved one and what they could do to help them. A few grew into a few more and then a few more. All come with very deeply personal stories of how dementia had impacted their lives, and their desire to contribute in any small way to make things better for others living with and caring for someone with dementia.

A Collective Vision for Dementia Care in Zambia

For us, our symposium was a victory because it brought together people who are passionate about dementia care in Zambia to discuss living with dementia and help us plan care based on our own context and available resources. Caregivers who had been sharing different approaches to care on the support group platforms and who stood tall to tell their stories. Health workers who volunteered their time to run dementia screening clinics, training institutions that are working to develop and adapt training packages that were locally contextualized, and researchers exploring the true prevalence of dementia in Zambia and working on low-cost diagnostics. And the media who allow us to use their platforms.

Throughout the symposium, we were very deliberate about what we wanted to come out of the event. The need for more advocacy for persons with dementia, the need for a national dementia plan, the need for more training among health workers around dementia, and the development and support for social services for persons with dementia. But, at the same time, we all agreed that even if only one person had shown up, and if they learned about dementia or felt that they had a community out there to support them, then our symposium was a resounding success. And it was!

This article is republished with permission from the World Neurology Foundation, a nonprofit organization committed to improving neurological care and education in countries worldwide. See the original article.