News | ALzheimers & Dementia Organisation Kenya

Raising Awareness of Dementia in Kenya

Most health care plans in Kenya have excluded older persons, especially those living with dementia, which makes it more difficult to advocate for their health since it has not been made a priority compared to other diseases that the government supports. Dementia is usually not viewed as a disease but more as a normal part of ageing.

Wambui Karanja, WYLD lead for the African Region, shares some of the key activations during World Alzheimer’s Month 2018, and efforts in raising awareness of dementia in Kenya

Alzheimer’s and Dementia Organization Kenya (ADOK1) is a non-governmental organization which was recently founded to support people with dementia and their caregivers and to create awareness on dementia in Kenya. The work of ADOK is crucial as we see a rise of neurodegenerative disorders here in Kenya.

While speaking on World Alzheimer’s day in Nairobi, Dr Juzar Hooker, a consultant neurologist at the Agha Khan University Hospital, noted that he has seen the number of cases of dementia increase over the past 15 years. As the number of older people grows due to an increased life expectancy in Africa, more cases of dementia are estimated to arise.

ADOK’s first priority is creating awareness on dementia in the country. According to the Alzheimer’s Disease International report on Dementia in sub-Saharan Africa2, there is often no equivalent term for dementia in local languages and a general lack of awareness in local communities. When we held awareness campaigns on dementia, we found that people lacked the term to describe dementia. However, they could understand what we were describing and knew someone living with dementia-like symptoms in the community.

For the first time, ADOK marked World Alzheimer’s month last September and took various steps to create awareness despite shortage of resources. Members and volunteers of the organization came together to engage in various initiatives. The events included visits to different churches to create awareness on Alzheimer’s Disease and other types of dementia. In addition to the five churches we visited, we went to an old people’s home where we donated food items and toiletries and had a fun day with them. We found it more cost-effective to engage already organized groups and institutions on awareness creation compared to organizing independent events.

ADOK appeared on five local national television stations – four of which are English broadcasting stations and one broadcasting in Kikuyu, a local language widely spoken in Kenya. It was the very first time a feature on dementia was done in a local language. The feature in Kikuyu was a huge success as compared to those in English. It gained over 17,000 views on YouTube, while the others received less than 1000 views each. We also realized that we had more feedback on awareness created in local languages than during sessions we conducted in English. This shows the great need for health education in local languages which we tended to ignore before, and with which we need to engage more with.

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Remembering to Love Those Who Forget – Dementia Stories from Kenya

Imagine dying because you forgot to breathe. Joel Kasimu was a policeman, an Officer Commanding Police Station (OCS). His wife, Rose Wambui , described him as a patriotic man who lived to serve Kenya, “He was so proud of his job, how he would get up, dress and prepare for work in his uniform,” she explains, lifting her chin to mimic his posture and recalling how the 6-foot-tall man stood akimbo in his uniform, ready to leave home and serve the nation. Having suffered from diabetes, he reluctantly went on early retirement in 1985 on medical grounds at around the age of 55. Mr. Kasimu did not know his exact age. It was the time when you started school once you could touch your left ear with your right hand by passing it over your head.

A couple of years after his retirement, in 1989, Joel’s eldest daughter from his first marriage died of cancer. His first wife had also died years back and that was when he married Rose. In a short span of time Joel had lost both his work and a daughter. Elizabeth Mutunga, his first daughter from the second marriage, described the conspicuous changes that led the family on a 17 year journey of turmoil in the home. Changes that left them perplexed at to what was really happening. “First, he moved us from a four bedroom maisonette into an iron-sheet building round the corner. Then he sold his car, but first he sold the tyres then the body.” With time, things got worse. Mr. Kasimu would want to go to church on a Tuesday. When the family told him they would go on Sunday as they always did, he would get agitated and restless. He was a knowledgeable man, who served his country as an OCS, how could they patronise him in that way?

When Elizabeth finished high school in 1992, she took up her first job as a laundry operator at the Nairobi Safari Club, for a salary of 5,000 Kenya Shillings. With the changes in the home, this enabled her to support the family. “Dad beat me until he broke my arm,” she shares, maintaining eye contact, not letting her head drop at this painful memory. Joel thought Elizabeth was interfering with his ability to take care of his home as the head of the family. The reasonable, well weighed father was gone and in his place was a man trapped in his long-term memory whilst losing his sense of the immediate world around him – this terrified him as much as it did his family.

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Dementia claimed my dad as I helplessly watched him

Elizabeth Mutunga, the chief executive officer of Alzheimer’s and Dementia Organisation of Kenya, speaks about her family’s experience with Alzheimer’s at her home in Lang’ata on September 18, 2019. PHOTO | KANYIRI WAHITO | NATION MEDIA GROUP

As the world marks World Alzheimer’s Month, Elizabeth Mutunga, 44, shares about her family’s experience when her father was diagnosed with the disease.

“Dad was diagnosed with Alzheimer’s during one of his regular appointments in 2007. By then, the condition was seen as a white man’s disease.

I had enrolled for a counselling course around the same time, and I decided to research more on the condition and wrote a special paper.

These research showed that my dad had carried the symptoms for 17 years yet it was misdiagnosed.

Let me go back to the beginning. In the early 1980s, my dad had been a high-ranking policeman. Whenever he came back from work, he would sit and read to us in his uniform.

Mum was the disciplinarian, so my three siblings and I would always run to dad a lot after fighting with her.

In 1985, he went into a diabetic coma and was in the hospital for a while. This meant that he had to be retired early on medical grounds.

CANCER TRAGEDY

I was in Class Five and life changed. We were used to getting preferential treatment because of his position at work. Now we had to move from a government house to a low-cost area.

Then, in 1989, tragedy struck again. We lost our last born sister to cancer. She was daddy’s girl, they were inseparable so her death hit him hard.

He went into this shell and he was always sad or angry. He would beat us up, at the slightest provocation. This would remain his personality for the years to follow.

Seeing the physical and psychological changes in my dad left mum frustrated. She almost went into depression due to the constant fights and arguments.

It was sad for us all, seeing his condition deteriorate each passing day. Being half Kamba, the witchcraft rumours started circulating. It was a hard time for our family.

LIFESTYLE CHANGE

My dad had always been a stickler for excellence, especially in his appearance. Now here he was dressed in pajamas on top of his favourite Kaunda suits. He was also losing money and accusing us of stealing it.

When I was in Form Four, he moved us from our four-bedroomed maisonette in Uhuru Estate into a mabati house around the corner, saying, ‘Jesus is coming back soon so these material things will not matter anymore.’

The shame of the status change was immense. More people dropped from our circle. Very few would visit.

My mum would have preferred to move us to shags but we had not yet built a home there.

Soon after, dad started selling the car parts. I had also just finished my high school education at the time and my sister was waiting to join Form One.

All of a sudden, dad said that she couldn’t because she was not married yet. My mum had been a stay-at-home mum, which meant that I had to step in and help the family with the basic needs, as well as my younger siblings through school. I had to look for a job at 17 after completing my O’ levels.

SUPPORT GROUP

Dad also started to walk everywhere instead of using public transport, no matter the distance.

I remember him walking from Uthiru, where he lived, to Aga Khan Hospital to visit me…

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Read the full story on The Daily Nation