Remember Me: Ndjinaa

On the 10th September was another small ‘step’ for women but a huge leap for people living with dementia in Africa when Susanne Spittle from Berlin did a presentation on Dementia in Africa titled: “I lost my mind – am I a witch?’

OLYMPUS DIGITAL CAMERA OLYMPUS DIGITAL CAMERA Ndjinaa in a hurry

In this way, Ndjinaa was remembered when delegates from all over the world gathered at the Global Conference of Human Rights and Dementia and watched Susanne’s presentation and photos of Ndjinaa in and out of chains in 2012.

Thank you Susanne! You kept your promise after our two weeks of research in the Zambezi and Kavango last year. You said you would tell the world – and you did! Thank you!

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ADN salutes you! May the Ndjinaa’s of Africa rejoice because the ‘night of darkness’ is starting to fade i the Rays of the rising sun of freedom.

 

Science: Coffee science

Yesterday’s coffee science: It’s good for the brain. Today: Not so fast…*

The Washington Post – by Ariana Eunjung Cha

emdtphotography

There’s been a ton of news recently about how awesome coffee can be for many aspects of your health — heart disease, longevity, depression, Type 2 diabetes, Parkinson’s.  The scientific data has been so strong that the nation’s top nutrition panel recommended earlier this year that people might even want to consider drinking a bit more.

Now comes a sobering report.

In a study evaluating 1,445 people, scientists found that consistently drinking one to two cups of coffee each day is associated with a significant reduction in the risk of mild cognitive impairment (MCI) — a precursor to dementia and Alzheimer’s — compared to those who never or rarely consumed coffee. That supports previous work, published in 2010, that showed that caffeine may have a neuroprotective effect.

For the whole article: Washing Post

Attempts at creating a National dementia strategy for Nigeria

Alzheimer’s Dementia Namibia wants to publish the below letter for a number of reasons.

No 1 – We need to get the message out there.

No 2 – The struggle is so similar that it hurts.

And that is enough reason for us to help Rosetti Care in Nigeria. Please take time to read the below and help us to help them spread the word.

Dementia Nigeria

Attempts at creating a National dementia strategy for Nigeria

The Problem

I posted the article below on Facebook to jolt Nigerians into waking up and joining the rest of the world in the fight against Dementia (most seem to think that it is a “white man’s” disease!) The stigma is so entrenched, only two Nigerians ”liked” the posting, and only one Nigerian made a comment!

Lunacy, Witchcraft, and other Myths – what defines dementia in Nigeria


People acting out of the ordinary must be mad, or possessed by evil spirits and are therefore witches.  Mad people and witches are non people; they are ‘less’ than human; they are faceless vermin to be easily discarded.  Methods of discarding non people, lesser humans, faceless vermin: Friends and family dump them far away from home, somewhere they cannot be recognised or traced back to their roots. Places where they are nameless, faceless vermin, where they are either struck by fast moving vehicles and left to die with people passing by and doing nothing to help them; or where they are stoned/burnt to death as witches especially for talking to themselves and to people nobody else can see; or for acting irrationally. It only takes one person to point them out as witches for a crowd to quickly gather… and then there is no way of stopping the ‘mob justice’
Affluent families tend to lock theirs away from the community to avoid stigma. They pretend and tell friends or enquirers that their afflicted relative has travelled abroad, “gone away”. You see, madness and witchcraft are said to run in the family. Nobody marries into a family thus tainted and afflicted.

The Dementia Activist

For over two years now, I have been working hard raising dementia awareness in Nigeria mainly in order to remove the stigma and help persons with dementia and their loved ones understand the situation in which they find themselves. It is not easy living with dementia in any country, but it definitely is frighteningly fatal in Nigeria.

I had asked Alzheimer’s Society to roll their Dementia Friends programme (which is a huge success in the UK) into Nigeria as part of that initiative. After all Dementia is a global issue. I explained to them that the programme will slot in nicely into my Dementia Awareness plans for Nigeria, and that their training resources will provide current and added support. Of course, Nigeria will need to translate most of the resources into Nigerian languages (there are over 250), and put a Nigerian “slant” on them. After over a year of failed attempts at convincing the Alzheimer’s Society to go global with their awareness resources, I gave up, only to learn a couple of months ago that Canada and the Netherlands are now running Dementia Friends programme!

Prior to finding that out,  I had approached the global Purple Angel for assistance. I like the fact that it was founded and run by PWDs with direct experience of Dementia, which means other PWDs will relate easily with them. I feel honoured that they appointed me as Head of Operations, as well as an Ambassador of Purple Angel in Nigeria. In turn, I have so far appointed 15 Ambassadors (5 of these are professors, 3 are doctors and one is in the Senate) with 22 more in the pipeline. There are 36 States in Nigeria plus the Federal Capital Territory. The aim is to have one Ambassador each for each state and the FCT. This will ensure that not only will dementia awareness be raised all across Nigeria, but PWDs and their loved ones will feel they have some sort of local support no matter how minimal at the beginning. There is a plan to further divide the entire country into 6 or 8 zones with each zone having a Co-ordinator whose role it will be to relay feedback and to cascade updated training to their respective zones.

The Diplomat

Everything takes time in Nigeria! People here have expressed surprise at how fast we are moving. There is also our politics with capital P and small p. Too many tribal and societal issues. I don’t want to be seen to be prejudiced or “tribalistic”. People in high places who want in don’t have the time to go on campaign, and others have time but not the required access. Some States are embracing awareness faster than others, and it will be those slow ones that will complain later that they are being hard-done-by.

At the rate we are going, we will have more than one Ambassador in some States. I am mindful of ruffling feathers in those cases. So I have to ensure the multiple Ambassadors can work together, not against one another, otherwise the name Purple Angel might be damaged in the power struggle that might ensue. This is one of the reasons why I am advocating dividing the country into 6 or 8 non-political zones with each zone having a zonal co-ordinator. The hope is that the Nigerian government will very soon notice our activities and will want to claim it as their initiative, especially when the rest of the world asks what Nigeria has been doing about Dementia.

The Communication

The Nigerian Purple Angel Ambassadors have been holding events at physical locations as well as online, where we try to raise awareness and enlighten participants. We now have 4 Facebook pages dedicated to enlightening Nigerians on dementia related issues. The FB pages are: Dementia Nigeria, Dementia Care Society of Nigeria DCSoN (closed group), Purple Angel Dementia Awareness Nigeria, and Purple Angel Ambassadors Nigeria (private group). It is heartening to see the traffic on these FB pages, and the fact that most of the postings are regularly shared. This means that those who are still reticent in contributing to the discussions (due to stigma) are nonetheless sharing the information with friends and families.

I have also woven the our activities around such global events like, World Elder Abuse Awareness Day, Alzheimer’s Month, Mental Health Awareness, Mothers Day, Fathers Day, Children Day, etc. I host these events at my facility, as well as arrange for some marches through towns and villages. We take the opportunity to raise Dementia awareness at these events. We are gearing up for Nigeria to become a part of the Age Friendly Communities and Cities!

The Funding

I am rather proud that we have the interest that we have, bearing in mind that Nigerians are not normally known to be involved in projects that do not reward them financially. The Ambassadors know that this is purely voluntary with no wage attached, and yet they want in!

As I have demonstrated, it does not require millions of UK pounds, or unscrupulous individuals with begging bowls running to the rest of the world for handout to raise awareness in Nigeria. It just needs local people who are willing to spare some of their time and energy to keep the ball rolling. Although I must admit the fact that I have been funding all these activities out my own money.

The Nigerian Ambassadors we have at present have agreed on future plans to raise funds within Nigeria in order to better support PWDs and loved ones. The hope is that we can convince the Nigerian government to take on part of the funding sooner rather than later. For now, some Churches, Mosques, Schools and Colleges are allowing us free access to their facilities where we can have Memory Cafes. Some private hospitals have also given us the free use of their premises as well as their doctors and nurses for Memory Clinics. We are currently working on getting some of Nigeria’s billionaires to donate some residential facilities as well as outreach and support personnel for those who are destitute and who are trying to live with Dementia.

Not The End……..

Initiatives

IFA Member – International Longevity Centre Canada

 

The International Longevity Centre (ILC-Canada), situated in the University of Ottawa, Faculty of Health Sciences, is an independent think tank with a focus on proposing ideas and guiding policy to address population ageing based on international and domestic research and practice.

 

ILC-Canada is concerned with a range of issues; however has particular interest in the area of health and long-term care and pays close attention to groups at risk.

 

Learn more on the ILC-Canada Website.

World Elder Abuse Awareness Day, Ibadan – June 15 2015

 

To commemorate World Elder Abuse Awareness day on 15 June 2015, Rossetti Care in association with Dementia Care Society of Nigeria and Dementia Nigeria teamed up with a local primary school to demonstrate the importance of older adults in a way that was both educational and fun for all.

 

“Growing up in Nigeria in the 60s the idea of elder abuse was inconceivable.  But times change and in the hustle bustle of our fast developing nation some of the older adults are being left behind, neglected and ill-treated.  This is a 21st century reality that needs to be addressed in Nigeria and throughout the world.” – Dementia Nigeria

 

Read more about WEAAD, Ibadan 2015 here.

Her Name Was Ndjinaa

The following was written in Afrikaans by an anonymous writer who was deeply touched by the story of Ndjinaa… (Below the original piece is a translation by myself.

…haar naam was Ndjinaa

Daar is n storm in my hart wat broei. Soos Simson van ouds, n passie n droom. Dan sien ek haar vasgeketting soos n mal dier in die stof n bondel flenters bene. Haar oe is wild en verward haar gebabbel in die wind; almal lag, en is bang, die ou mal-vrou.

 Ek kyk na haar ek sien in haar verlepte oe, hoe sy smeek in haar wereld van stilte en seer. Onderhandelinge harde woorde omgee woorde sagte woorde jy is vasgevang in my.

 Dan die geklingel van n ketting wat breek jou gebreekte lyf, n siel stukkend vertrap, sak jy weg in n sinkbad in die stof. Sag gebad in die land van melk en heuning. Toegevou in meter en meters goud sag om jou lyf. Jou oe kyk na my vir n oomblik was jy daar. Dankbaar vir jou!,  witman ongeag jou kleur elke dag vir jare, myle en myle ver, het my gebabbel in die wind geloop soek na jou, tot jy my kon hoor, my roep in stile na jou. Jy het my gehoor jy het my kom gesoek en op n dag het jy my,  die malvrou uit kettings kom red, en die wereld gewys ek is net n Ovahimba vrou, vasgevang in my eie stiltes, ou jare se drome en tyd….

… her name was Ndjinaa         

 (freely translated – emdt.)

There is a storm brewing in my heart.

Like a Simpson;

I have a passion; a dream.

Then I see her,

An animal chained to the dust.

A heap of bones, shattered.

Wild eyed, the wind carry her troubled babble,

They laugh; they are scared,

The crazy old woman.

I look at her and in tired eyes

I hear her begging in a world of quiet and hurt.

We trade harsh words

Caring words

Soft words.

In me, you are captured.

Then finally,

Metal chains are cut.

Your broken body,

A trampled soul,

Eases into a sink bath on a dry earth.

Softly bathed in a world clothed with milk and honey,

Cradled around your body, meters of gold.

For a moment you are visible in tired eyes.

Thankful for you; white man!

Regardless of colour,

My babble were carried on the wind

Days, years… for miles and miles

It went to find you, white man.

You heard me,

You heard my silent cry for help.

You came looking for me

And then you came to save a crazy old woman in chains

And showed the world

An ordinary Ovahimba woman

Caught in her own silence,

In years of dreams and time gone by…

(If you have missed the story of Ndjinaa, please click here)

2014: The Year in Review (2)

2014: The Year in Review (2)

The visitors:

The Swedish film crew that I took to Epupa so that they could film and capture Ndjinaa’s life story. The same film crew who then incidentally disappeared with all the material and has never been heard from again. It was my first experience of the “world” seeing Africa as the pot of gold at the end of the rainbow.

Then there was Professor Reimer Grunemeyer and Doctor Michaela Fink from the University of Giessen whom I also took up to Epupa to spend some time at the dementia village. We (Koos and I), taught Prof Reimer how to drink whisky and he exchanged his old faithful cap for an Epupa Falls Lodge one to the surprise of his colleagues. (His old red cap now hangs in Koos’s office among dozens of others which he has been collecting as souvenirs.)

There was also the debate with three witch doctors from Angola that must have been quite an experience for the German sociologists present. Especially when I confronted the witch doctors and told them that they were mere conmen using the superstitions of Africans to collect goats, chickens etc. for their own profit. I still don’t understand why the professor was so upset?

And in between:

ADN started to communicate to different towns about becoming dementia friendly. At the end of the year I have visited Okahandja, Gobabis, Outjo, Henties Bay and finally also Maltehohe.

Henties Bay Spar Staff

And of course there was the usual fights that happens within and outside any organisation in the world.

To be continued…

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2014 : The Year In Review (1)

2014: The Year in Review

As we started 2015 in fifth gear, it is important for Alzheimer’s Dementia Namibia to look back at 2014 and recognise our achievements and our highlights as well as the pitfalls to learn and look forward to another year of endless surprises and achievements.

What we remember:

We remember a Kaputu that got very ill and was taken to Opuwo State Hospital. From here she just disappeared and we eventually found her in the Oshakati State Hospital in Ward 16 on a very thin ledge between life and death.

But we also remember the day that I, Berrie, had the privilege to return her to the Omaramba. When she finished her psychotic pills, Koos and I decided not to replace them or to return her to the Opuwo State Hospital.

Koos kept me up to date with Kaputu’s slow but sure revival and renewed strength. She started talking and then to eat and drink by herself. Then she started going to the bush to collect berries. The highlight came when she took berries from her collection and put some in Koos’s shirt pocket on one of his visits.

We remember how we started to take fencing and all the accessories to our new location. Mopani poles were cut and prepared for the border of Mbakutuka Komapando (MK). Gabriel worked very hard to finish the fence after Koos delivered the gates for the first ever Himba Dementia Village.

And then there was the Saturday in March that the foreigners helped us move the tented village where Ndjinaa, Kaputu and the three care workers (Tjauriza, Nancy & Venoo) have stayed for the last fourteen months to MK. On that hot Saturday Ndjinaa taught me how to listen. (You can read the full story here).

To be continued…

 

The InDuna & witchdoctors of Bukalo (Part 5)

The InDuna & witchdoctors of Bukalo (Zambezi Region, Namibia)

Written by Berrie Holtzhausen, 21st August 2014

I personally learned the following from our four days in the Zambezi Region:

  1. Dementia in Namibia (probably Africa) is caused mainly by HIV AIDS.
  2. The perception of the world that dementia is only found among the elderly, is proven wrong in Namibia.
  3. Everything in life, from draughts, the loss of cattle through wildlife and even the reason why some people succeed in life and others don’t, are blamed on bewitching.
  4. There are two kinds of witchdoctors. A) The traditional healer that heals through natural medicine. B) One that bewitches other people and controls the environment/nature.
  5. Witches are dangerous. Four witchdoctors are needed to confirm that someone is a witch.
  6. Every family has a witch(es) as all families have diseases, death and tragedies. And as you can only bewitch a family as a witch, you are a witch. This makes it possible to identify a witch in two ways: a) Someone in the family that has dementia or b) Someone in the family that is more successful than the rest.
  7. Almost everyone that we spoke to, belonged to some church or other but they all still believed in bewitching.
  8. The idea of bewitching inside and outside the church are basically the same, it is only the terminology that differs.
  9. My idea that ‘the success of bewitching lies in the brain of the one that believes in it’ is becoming truer to me.

I do hope to gather more information on all of the above in the Kavango Region as well, as in Namibia, the Kavango and Ovahimba Regions are considered the most powerful bewitching areas.

ADN

 

The InDuna & witchdoctors of Bukalo (Part 4)

The InDuna & witchdoctors of Bukalo (Zambezi Region, Namibia)

Written by Berrie Holtzhausen, 21st August 2014

Fortunately we did not leave the Zambezi Region without seeing the elderly. On the day we sat in on a court meeting, we learned from the InDuna, that the next day was pensioner’s day and that pensioners would come from all over to collect their monthly state pensions of N$600. At 8am the next morning, we were there, and from all over the elderly came walking, some from miles away, to come and collect their money. However, this didn’t work out as the money didn’t arrive and they had to return the next day. This made me extremely angry as this showed no respect for our elderly. What’s worse, most of these old people had to go back to their villages and hand over their money to their children. It isn’t lift that is unfair, it is people.

Even though the whole episode made me very angry, it did give us the opportunity to meet the elderly of the Zambezi Region. One of the first women we spoke to did not quite look sixty to me and when I started questioning us, she told us her mom was 97 and could not come herself. I questioned her about her mother but she was very shy and didn’t want to talk. I do have a feeling that this might be another Ndjinaa case, but time will teach us as I now know when and where to find the elderly.

A girl of about twelve arrived with her grandmother who told me that her grandmother talked incoherently, could not remember things and could not look after herself. The girl said her grandmother was bewitched. I spoke to another man, in his fifties, who sat next to his father. He confirmed that his father frustrated him as he spoke mostly nonsense and could not remember anything.

Unfortunately we did not have a lot of time as we had to return to Rundu, but the Ndjinaa ‘sticker’ served its purpose and I hope that our information will be discussed over many camp fires during the nights to come. We spoke to a lot of people who believed that the witchdoctors are there to make money from them. One even referred to the witchdoctors as conmen.

ADN

To be Continued…

The InDuna & witchdoctors of Bukalo (Part 3)

The InDuna & witchdoctors of Bukalo (Zambezi Region, Namibia)

Written by Berrie Holtzhausen, 21st August 2014

In the four days that we were there, we visited three villages, two churches, two schools and a traditional court where the InDuna listened to our story and our mission in the Zambezi Region. We spoke to about 150 people. The ‘sticker’ we have of photos of Ndjinaa was a huge help and both parents and children often gathered around my pick-up to talk to us and pepper us with questions. Most Caprivians (collective name of people living in the Zambezi Region) can speak English. With the help of the ‘sticker’ and applications on my phone, we could explain to them the effect of ‘bewitching’ on the human brain.

At one school we found 28 Grade 10 students preparing for their year-end examinations during the school holidays. This made it fairly easy for me to talk to them about Ndjinaa and dementia. They requested that I should come back the next day to show them the full slide show. Unfortunately they had no power in the classroom and I had to rely on my phone. However, Susanne was very happy, because this gave her the opportunity to hand out her question sheets that questioned the writer about his background, that of the family, the elderly in the family and about witchcraft. We distributed about 200 of these sheets and the info will be processed back in Germany.

At the one church that we visited, a woman asked for prayer. The next day we went to pick up Susanne’s question sheets from the pastor, we asked where the woman lived. He told us that her family reckons that she is either a witch or is bewitched. When we visited her in her little mud house, she told us that she was diagnosed with HIV AIDS, thus another HIV AIDS related dementia. She said her family isolated her because she was poor, but it was clear that it was because they thought she was bewitched. At the taxi rank another woman came to us. She too talked very incoherent and was seen as a witch by her family. After a while, she too told us, that she was HIV AIDS positive.

At the place where we stayed, we met an American who is busy with research on malaria in the area. He told us that the Zambezi Region has the highest HIV AIDS statistics in Namibia at 25%. All pregnant women get tested for it and about 38% of them test positive. In the time that we were in the region, we could not find someone with Dementia older than 55. Everyone was about 40 years old and had HIV AIDS.

During our evening discussions, I often told Susanne, that unlike in the rest of the world, in Africa, the number of dementia patients are far younger. They also don’t live with Alzheimer’s disease like 75% of the world’s dementia cases, but rather of HIV AIDS. I also have a suspicion that the double stigma of AIDS and bewitching are worsened by the rejection and isolation from the family. This makes ADN’s mission a bit more complicated and a huge challenge.

ADN

To be Continued…

The InDuna & witchdoctors of Bukalo (Part 2)

The InDuna & witchdoctors of Bukalo (Zambezi Region, Namibia)

Written by Berrie Holtzhausen, 21st August 2014

On our way to Love More’s village, he told us that his dad’s sister bewitched their family and in that way, acquired the whole village. According to him, his sister, Ofelia, is also mentally disturbed or bewitched. And so Love More and Ofelia were the first interviews we had in the Zambezi Region.

According to Love More this is the reason why he was attacked, so that he could not look after his family anymore. Ofelia has also worked at a supermarket in Katima Mulilo as a cashier until a few years ago. But she could not continue as she couldn’t count money anymore and made regular mistakes. This is one of the symptoms of dementia, but as Susanne pointed out, this is also signs of HIV. And as dementia is often caused by HIV AIDS, we tried to determine whether Ofelia has been tested for HIV but apparently, according to her and Love More, she tested negative. But she had two children from different fathers. When we enquired about them, we learned that the one was in Zambia and the other lived in a village close to the Bukolo filling station. Ofelia stated that he was also bewitched and Love More was very vague about this man’s whereabouts.

Obviously, we went to these villages next. Love More went with us, to help find the man. When we found him, he told us that he was three years old. He also continued to clap his hands like they would do to show respect to an elderly. We later found out, that years ago, he was diagnosed with HIV AIDS.

ADN

To be Continued…