UKZN’s Dr Khanyo Ngcobo completed an international pilgrimage of hope – Walking the Talk for Dementia (WDT) – along the ancient Camino route in northern Spain.
Ngcobo is an honorary Psychiatry lecturer attached to the King Dinuzulu Hospital in Durban and a Global Atlantic Fellow for Equity in Brain Health at the Global Brain Health Institute (GBHI).
The Camino de Santiago holds deep historical and spiritual significance, attracting pilgrims from all corners of the globe seeking self-discovery and enlightenment. WTD embraced this tradition, allowing participants to immerse themselves in the essence of the Camino, but this time with a single purpose: to build a better world for people with dementia.
Covering 43km over four days, the pilgrimage allowed about 70 participants from more than 30 countries, comprising healthcare professionals, advocates, policy-makers, researchers and people living with dementia, to engage in deep conversations about living, working, and researching dementia.
‘As a clinician, early career researcher and dementia advocate from South Africa, “Walking the Talk for Dementia” was a great opportunity to be a part of an innovative experience that aimed to empower individuals to raise global awareness about dementia by diversifying perspectives, empowering people and unifying the dementia journey,’ said Ngcobo. ‘The challenges related to dementia and dementia care in our country speak to the need for dementia advocacy. There is an urgent need for a dementia strategy to improve dementia services and provide clear person-centred inter-disciplinary dementia care pathways in South Africa. There is also still very low awareness about dementia in our society. Dementia symptoms are often misunderstood, under-recognised and undiagnosed which leads to poor outcomes for the person living with dementia (PLWD) and their families,’ she said.
‘This unique and immersive experience was life-changing. The walk and symposium brought together diverse stories and perspectives from across continents, regardless of our cultural, social, gender or educational background. The experience provided us with an opportunity to converse and dive deeper and cross-disciplinarily with regards to dementia. Often in our areas of work we operate in silos, for example a clinician who has never deeply engaged with a neuroscientist or a policy maker who has never deeply engaged with a person living with dementia or a care partner. The insights and interventions shared, the human connections made and the lived experience were priceless. The organisers of this event have started a great movement.’
Ngcobo said dementia was a broad term used to describe a group of progressive neurodegenerative conditions. ‘The symptoms of dementia get worse over time and include a decline in cognitive ability, memory loss, problems with language and understanding, changes in behaviour, confusion and a decline in executive functioning that are severe enough to affect daily functioning. We need to increase dementia awareness, and address modifiable risk factors that can reduce risk.
‘I have always had a keen interest in cognition and early in my career I was privileged to work with mentors who were in that field and supported that interest. Prior to specialising as a medical officer, I was exposed to memory clinics and participated in dementia research and advocacy support which further fuelled my passion.’
Ngcobo said in her work she was exposed to the lived experience of people living with dementia and their care partners, where the urgent need for more dementia research, dementia advocacy and improved person-centred services was painfully clear. ‘Dementia care is not prioritised in South Africa which translates to under-resourced services leading to poor outcomes and poor support for the person living with dementia and their families. It is my passion for dementia, the clear inequities and urgent need for intervention that drive the work I do.’
Ngcobo said there was still very low awareness about dementia in our society and that dementia symptoms were often misunderstood, under-recognised and undiagnosed which led to poor outcomes for the person living with dementia (PLWD) and their families. ‘At times, the symptoms of dementia are seen as part of normal ageing which is one of the reasons why people with dementia often present late in their condition to health care settings.’
Asked about her passion for psychiatry, Ngcobo said: ‘I have always known that I loved the brain, and during my Medical School training I thought I wanted to specialise in neurosurgery. However, during my internship and neurosurgery community service rotations, I realised how much I was fascinated by how the brain and mind are linked and understanding how neuroscience translates to mental health.’ This fuelled post community service where she worked in district psychiatry services. ‘I love the person-centred and lived experience aspect of the practice. Beyond neuroscience, psychiatry allows one to think and feel and to relate to others and to the world in a meaningful way,’ she said.
Ngcobo, who recently completed a descriptive research project on cognitive impairment, is currently undertaking dementia clinical care and research aimed at improving service provision in a local context and is also involved in advocacy and awareness programmes.
Words: Lunga Memela
Photograph: Alex Kornhuber