African Witchfinder: a film about dementia & stigma in Namibia and South Africa

Berrie Holtzhausen comforts Ndjinna.

For this year’s World Alzheimer Report, ADI looked at global attitudes towards dementia. The report combines the results of the largest study ever undertaken regarding attitudes towards dementia, as well as case studies and experts from around the world.

One of the case studies comes from Berrie Holtzhausen, CEO of Alzheimer’s Dementia Namibia. The case study examines the challenges related to stigma, including witchcraft, in Namibia and South Africa.  The case study can be read on page 125, of chapter 4, in our World Alzheimer Report. To read the case study, click here.

This accompanying blog is from one of the directors, Toby Trueman, behind an incredibly powerful and important film capturing Berrie’s work in Namibia.

 


It was back in 2016 when we were first introduced to Berrie Holtzhausen, the CEO of Alzheimer Dementia Namibia. The wonder of social media had put us in touch with Shara Johnson, an American travel photographer who met Berrie when visiting Africa. Shara passed on his number, and it wasn’t long before myself and co-director Mally Graveson were chatting with him over Skype.

The emotional power of his experience was striking; Ndjinna, the sister of a village chief,accused of witchcraft and chained to a pole in a decrepit mud hut for 20 years, living off scraps thrown to her by terrified villagers. Ndjinna has dementia. Berrie negotiated her freedom and set up a care village to drastically improve her quality of life, then used this experience as a case study in a mission to help other ‘witches’ throughout rural Namibia.

All too often, these so-called ‘witches’ were people suffering from mental health issues and in some cases targeted simply because they were elderly. For those in sub-Saharan Africa being labelled a witch can be a death sentence and, as we were to find out, one often carried out by members of their own family.

We followed Berrie for three weeks, travelling thousands of kilometres through the beautiful and varied Namibian landscape; visiting Ndjinna and her brother, the King of the Himba, and travelling to other villages, seeking out those who had been accused of witchcraft or affected by this deadly combination of superstitious beliefs and lack of understanding of mental health.

The stories we heard were both shocking and heart-breaking in equal measure. Murder, sedation, and the threat of extreme violence were regular topics of conversation. This was balanced by the extraordinary breadth of Berrie’s humanity; his continued drive, his absolute dedication to helping the most vulnerable people, was humbling.

Whilst making the film, with long hours spent traversing dirt roads and seeking remote communities, we learned so much about the widespread belief in witchcraft. How it lurks in the background, affecting everything from village life to country politics. How jealousy can quickly combine with a lack of understanding in a series of events that ends with the taking of a life.

Ignorantly, it seems completely medieval to us ultra-privileged residents of the first world, but the current reality is that in amongst the ancient beauty and natural wonder of the African continent, people are being murdered by their own families simply because they are behaving in a way that cannot be explained. This must change.

Leaving for Scotland, we realised we were only scratching the surface of this topic; the film we completed can only serve as a brief introduction to Berrie’s work and an even broader overview of the incredibly complicated situation in sub-Saharan Africa.

The truth is that a belief in witchcraft is leading to the violent persecution of those with dementia and other misunderstood mental health issues, and we hope this film will help raise awareness of what is happening every day in Namibia and beyond, perhaps even help trigger a drive in early-stage education that will save the lives of the most vulnerable.

 


About the film

African Witchfinder is the first documentary film to be produced by Cloud Break Pictures, the original content arm of Edinburgh based video production company Heehaw. Directed by Mally Graveson and Toby Trueman, the film screened at film festivals in the US and Europe, where it picked up 4 awards. The full film is free to watch on the Cloud Break website.

You can find out more about Heehaw by visiting here.

Alzheimer’s Dementia Namibia are a member of ADI. You can find out more about their work here.

Research and Collaboration

Why is research collaboration so important? Senior researcher Professor Julie Williams gives her view.

For the last 25 years my team at Cardiff University has been focused on trying to find genes that affect a person’s risk of developing Alzheimer’s disease.

Over the years we have formed ever larger collaborations, first within the UK and then with colleagues in Europe and the USA. This partnership work has led to the discovery of over 40 susceptibility genes, giving us a much clearer understanding of Alzheimer’s disease.

As a result of this work and the vast amounts of genetic data we have collected and analysed, we are now able to predict whether a person will develop Alzheimer’s disease with reasonable accuracy.

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My most prized possession: A story of care from Nairobi

Yasmin Jeevanjee with her father.

Teacher Yasmin Jeevanjee tells her story as a care partner in Kenya.

I was born and grew up in Nairobi, Kenya. After finishing my secondary education, I went to study abroad. I travelled extensively and eventually settled in London, where I pursued a career in teaching, my expertise being in Early Year’s Education. My parents continued to live in Nairobi, and I would visit them frequently.

On a visit in 2012, I felt that something was not right with my father. He seemed more forgetful than usual and, when he did not recognise an old family friend, alarm bells went off in my mind. In 2013, he was seen by a neurologist and diagnosed with Alzheimer’s Disease.

My first reaction was one of shock and horror. This couldn’t be happening to my dad. My dad was a highly successful lawyer. It was hard to accept. Indeed, some of my family members were in complete denial.

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Dementia Research: Where are we now?

ADI Vice Chair Dale Goldhawk with his father, Alphonse

Dale Goldhawk, Vice Chair of ADI, takes a personal view on psychosocial dementia research.


It’s a sad fact that, to date, not much in the Alzheimer research world has been considered “groundbreaking”. The development of cholinesterase inhibitors certainly marked some progress but, while those medications can help with symptoms, they bear no resemblance to an effective treatment. And that’s where we are today in 2019. Sure, there have been some research and clinical trials, showing the usual “promising results” but these promises are often modest at best.

To my way of thinking, any breakthroughs will likely come through psychosocial not biomedical research. And when I think of quality of life breakthroughs, one immediately comes to mind.

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Viewpoint: My First WHO Executive Board

by Annie Bliss, ADI Communications and Policy Officer

ADI’s Communications and Policy Officer, Annie Bliss, at the WHO Exec Board in Geneva

On 24 January 2019, wrapped up in Winter wear, I touched down on Swiss soil for my first World Health Organization (WHO) Executive Board meeting. My first observation: “Wow, Geneva really is a functional and miniature city!” After a smooth bus journey to the WHO building (or as it’s locally known, OMS), I was met by the hustle and bustle of side meetings and coffee runs. ADI’s mission was to ensure that the profile and priority of dementia remained high, with key statements planned under Non-communicable diseases (NCD) and Universal Health Coverage (UHC). I was also aware from discussions with colleagues of the successful advocacy efforts of ADI and its members at the last Executive Board to ensure that dementia was specifically identified in the 13th General Programme of Work.

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Let’s Talk About Dementia Research: Your Questions Answered

In November last year, ADI held the first in a series of global webinars: Let’s Talk About Dementia Research: Demystifying Trials, Access and Understanding.

We created the series to provide a unique opportunity for the public and Alzheimer and dementia associations to engage directly with health and social care professionals, as well as companies involved in dementia research.

As far as we know, no other webinar has provided such ‘public to professional’ access before.

We heard from the pharmaceutical industry, researchers and clinicians conducting research and clinical trials, as well as primary care health professionals supporting patients and families. Most importantly, we heard stories of people living with dementia and their care partners about their lived experience. 

During the webinar, we invited participants to ask our panel their most pressing questions. Whilst we were able to cover many of these topics live, in the lead up to our second webinar: Let’s Talk About Dementia Research: Global Barriers and Access to Trials, we wanted to respond to some of your unanswered questions.

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