Namibia: Dementia Activist Comes Face to Face With Alzheimer's

For the past 12 years, Berrie Holtzhausen has been involved in the care of people living with dementia, now years later, he has ironically been diagnosed with the condition.

Holtzhausen (65) earned the nickname 'African witch finder' for breaking the stigma around the rural elderly who are sometimes branded witches and wizards because of lack of knowledge about the condition.

Through his work, he helped to educate communities about the condition and its management.

He established the Alzheimer and Dementia Namibia (ADN) centre at Swakopmund, a home for people with dementia.

He also campaigns against the stigma of the disease and that instead of being ostracised, locked up, assaulted and being called witches, dementia patients should have affordable diagnosis and care.

fading memory

About three years ago, Holtzhausen noticed he could not remember people's telephone numbers, names, or faces that well. His temper also began flaring over small things. And then there were the headaches, which were new to him.

"This would cause me stress because I would believe I said something, which I did not, and then hold others accountable for not listening to me, when in fact I never said it," he explained. "I would in fact think people were playing mind games with me."

The last straw came when he "stole" spectacles from a shop while he purchased an identical pair.

"I first thought it was magic - having the same pair in one room, and it suddenly appearing in my bag in another room. Then I realised I bought one and carried out the other. Imagine what trouble a person can get into unintentionally," he said.

He then approached a neurologist in Windhoek who confirmed his suspicions, and set up several follow-ups.

A scan report states: "The study findings are consistent with Alzheimer's disease, with supporting features of progression of disease noted."

"I have a lot of experience in this field, and know the signs, so I was not surprised. The challenge is to live with it as long as possible, maintaining a quality life, not just for myself but also for those close to me," he explained.

Dementia is an overarching condition of terminal mental deterioration that affects many mental and physical abilities, such as memory and comprehension, which can render a person helpless - where everyday activities are forgotten, or become impossible; the last phase is physical: loss of mobility, swallowing challenges and incontinence.

"Mostly, these people are given anti-psychotic and anti-depression medication as a chemical-restraining option and sign of ignorance regarding the disease and challenges of people living with dementia, or using physical restraint by tying them down or keeping them locked in rooms - all actions that only aggravate the condition of the patient," he said.

He holds a master's degree in theology and was a pastor for over 20 years.

He also has an honours degree in Semitic languages.

After being 'called' to serve people with dementia, he travelled the world attending schools and universities where he gained knowledge on the condition, and worked with local doctors.

"Dementia cannot be healed. Parts of the brain start dying, and eventually, a person cannot speak, eat or even breathe. It's not just forgetfulness, and it is not a matter of survival but maintaining quality of life in the end," he said.

REHABILITATION

Therapy includes re-association of senses and the support of loved ones who will act as "external brains" - such as his wife and children.

He said that his deterioration from the condition was setting in - which includes hallucinations where what he sees becomes his reality.

Holtzhausen became famous when, on 12 December 2012, freed Ndjinaa Ngombe, who had been kept inside a hut for 20 years in Kunene region. She was regarded a "dangerous witch", but was only living with dementia. She still lives at the centre.

"It is obvious people do not understand this sickness, and there is a serious need to bring awareness and protect the rights of people with dementia," said Holtzhausen.

"People need to become knowledgeable and create awareness. Ultimately I hope there will be affordable diagnosis and care for such patients," he said.

According to the World Health Organisation, Alzheimer's disease is the most common form of dementia. There are no available treatments that stop or reverse the progression of the disease, which worsens as it progresses, and eventually leads to death. There are currently no specific markers that can confirm with 100% certainty Alzheimer's diagnosis. A combination of brain imaging and clinical assessment checking for signs of memory impairment is used to identify patients with the disease.

"There is a clear need for tangible advances in the area of biomarkers for assessment of risk, diagnosis and monitoring disease progression. Screening of patients still remain very expensive and new research is necessary to develop non expensive and reliable tests. Continuing efforts are still required. This includes developing medicines that would slow progression, halt, or prevent Alzheimer's disease and other dementias from occurring," a WHO comment reads.

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