145 Indigenous languages and no word for dementia: use of innovation and technology to help overcome stigma

On World Alzheimer’s Day 2019, ADI released the World Alzheimer Report 2019: Attitudes to dementia. Within the report, there are number of other chapters that highlight some of the challenges and innovative responses to dementia within Indigenous populations around the globe.

ADI Member Dementia Australia contributed this piece that looks at the importance of culturally sensitive diagnostic methods when addressing dementia within Indigenous Australian communities.

Maree McCabe, CEO of Dementia Australia and contributor to the piece, asks: “Dementia is complex. How do we communicate what is a complex message, to the many different and varied communities across this vast land? Technology combined with culturally appropriate cognitive assessment tools could be the answer.

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The circle of life; Indigenous knowledge about dementia in Canada

Dementia Research Advocacy Group.
Left to right, back row: Jules Osawamick, Roseann Debassige, Bonita Bebamash and Bill Antonie
Left to right, front row: Melissa Blind, Monica Pheasant, Jean McGregor-Andrews, Karen Pitawanakwat and Kristen Jacklin.

On World Alzheimer’s Day 2019, ADI released the World Alzheimer Report 2019: Attitudes to dementia. Within the report, there are number of chapters that highlight some of the challenges and innovative responses to dementia within Indigenous populations around the globe.

Kristen Jacklin, Professor of Medical Anthropology at the University of Minnesota Medical School Duluth and Karen Pitawanakwat, Registered Nurse and Community Researcher for Naandwechige-Gamig Wikwemikong Health Centre and member of the WikWemikong Unceded Reserve, contributed this piece that underlines the necessity in understanding the experiences of dementia within Indigenous communities in order to meet dementia care needs in a culturally appropriate way.  

Karen Pitawanakwat writes: “I want to introduce the concept of the circle of life as it relates to four of our seven grandfather teachings. Our elders are living in their seventh stage of life.  They have a lifetime of wisdom that is respected.  Interactions with an elder instinctively show kindness and love.  We are a humble people who value our time walking here upon the earth as a spiritual collective to learn and share for the benefit of seven generations who will walk the same earth ahead of us. In an elders last stage they are transitioning back into the spiritual world, part of the continuum of life.”

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Thinking more deeply about dementia friendliness

Glenn Rees, Chair of ADI.

On World Alzheimer’s Day 2019, ADI released the World Alzheimer Report 2019: Attitudes to dementia. Glenn Rees, Chair of ADI, and Dr Linda Barclay, a Senior Lecturer in Philosophy at Monash University who specialises in disability and justice, contributed this piece that questions how we see and understand dementia friendly communities, their role and how they may evolve.

Glenn Rees said: “Dementia friendly projects are a welcome and positive element to changing the way societies think about dementia. But this should not distract advocates and governments from addressing deeper structural and cultural issues that have resulted, and continue to result, in mental and physical abuse and social isolation of people with dementia and lack of access to health and care.

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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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