BEYOND MISCONCEPTION: WALTER SISULU SCHOLAR CHAMPIONS DIGNITY FOR PEOPLE LIVING WITH DEMENTIA

For some families in rural communities, dementia can bring more than memory loss and confusion. It can expose loved ones to misunderstanding, isolation, ridicule and, in the most distressing cases, abuse and violence. 

It was witnessing the painful consequences of such misconceptions that inspired Walter Sisulu lecturer Dr Mphumzi Dlamini to investigate dementia and its management in rural communities.

A registered counselor, Dlamini, at just 28, recently obtained his PhD through the Faculty of Health Sciences’ Department of Public Health, producing research that seeks to improve the lives of people living with dementia and the families and professionals who care for them.

His study, titled "Developing a Conceptual Framework for Managing Dementia and Associated Risk Factors Among Adult Population in OR Tambo District, Eastern Cape", examines gaps in dementia care and the responsiveness of healthcare systems in rural areas.

Dlamini, who grew up in Mthwane, Umzimkhulu, said his interest was sparked by witnessing adults displaying symptoms of dementia being misunderstood and, in some instances, associated with witchcraft.

“I became interested in Major Neurocognitive Condition management because I witnessed community conflicts caused by misunderstanding of dementia,” he said.

Such experiences, he said, made him question whether healthcare systems, families and communities had the knowledge and resources necessary to respond appropriately to the condition.

His research identified significant challenges confronting rural healthcare facilities, including shortages of specialists, limited diagnostic services, inadequate training for healthcare workers, insufficient caregiver support and a lack of appropriate technologies.

Yet Dlamini's work is not simply about identifying what is missing. At its heart is a call for a more compassionate and person-centred approach to dementia care.

His Conceptual Framework for Dementia Management and Associated Risk Factors brings together healthcare-system readiness, healthcare-worker capacity, caregiver experiences and community knowledge to strengthen prevention, early identification, diagnosis, treatment and ongoing care.

“The ultimate goal is to shift dementia management from a predominantly reactive, condition-focused approach towards proactive, integrated, preventive and person-centred care,” he said.

For Dlamini, dignity must remain central to that care.

The framework seeks to promote continuity of care and improve the quality of life of people living with Major Neurocognitive Condition and their caregivers, while recognising that dementia is not merely a clinical or cognitive condition, but one with profound social, psychological and economic consequences.

Dlamini also stresses the importance of communities and caregivers, particularly where healthcare resources are scarce.

“Caregivers often provide the daily support, while communities can reduce stigma, social isolation and discrimination and encourage a supportive community culture, which is Ubuntu,” he said.

Although shortages of specialists and technology may take time to overcome, Dlamini believes meaningful change can begin with what communities already have, compassion, communication, support and a willingness to understand.

“In essence, this approach means using what we have creatively to ensure that people living with dementia remain respected, supported, socially connected and involved in decision-making about their care,” he said.

His doctoral research has already produced three articles in accredited journals, with three further manuscripts under review.

For Dlamini, the work carries a deeply personal message - ageing is something every society must prepare for.

“No one grows younger, so we have the responsibility to improve the management of dementia, as we do not know what our own adulthood will look like,” he said.

By Thando Cezula