When Virginia Githui received a call that her mother, Rachel Githui - who used to run a shop in town, was seen waiting outside it she did not think much about it.
Virginia knew that her mother was to meet up with her friends to make a trip to Eastleigh and so she figured that they were yet to meet. However, when she called her mother’s friends, they informed her they had met up with Rachel but that she had disappeared.
When she went to her mother, Virginia was taken a back when she insisted that she was waiting for her friends. She had completely forgotten that they’d been together just moments earlier.
“That was the first time my mother had such a memory lapse. Previously, she’d get into a matatu then call to say she has no bus fare or get into the wrong matatu and I had to go and pick her up.
When this happened, we decided to seek medical advice to determine what was going on with her,” Virginia says.
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After a brain scan, the family was informed that her mother had Alzheimer’s. That was 2009.
“I had absolutely no idea what that was and I had to do a lot of background research to learn more about the condition and I am glad I did because as days went by, her condition further deteriorated,” she says.
Rachel appeared to take a turn for the worst in 2011 when her son was in a road accident and in 2013 when her husband died.
“When dad died, mum reacted the opposite of how a grieving person is expected to behave. She looked and acted jovial, full of energy while everyone else was sad,” Virginia says.
It was also during this time that things shifted completely and when Rachel forgot how to cook and various other things expected of an adult, Virginia took her in.
But what is Alzheimer’s disease? According to Alzheimer’s Association, this is a type of dementia that causes problems with memory, thinking, reasoning and behaviour to such an extent that it interferes with a person’s daily life and activities
You might think this is a normal process in aging, especially since it affects those approximately 65 years and above. This is, however, not the case.
Alzheimer’s is a progressive, irreversible brain disease whose cause is not yet fully known with scientists saying it could be a combination of genetic, environmental and lifestyle factors.
The association further describes the symptoms as; difficulty remembering newly learned information (which is also known as short term memory loss), significant mood and behavioural changes as well as deepening confusion about events, time and place.
There could also be unfounded suspicions about family, friends and professional care givers and as the disease progresses, the individual will experience difficulty speaking, swallowing, walking and even in controlling their bowel movement leading to incontinence.
Because it can be a real challenges taking care of Alzheimer’s sufferers, family members often need to receive some form of training to help them cope. This is what Salome Chira, a Clinical Officer with At Home Healthcare Kenya, offers to people like Virginia who find themselves with an emotional and financial load in caring for their loved one.
Salome says when making house calls to elderly HIV/Aids patients, she noticed that a big percentage of them were developing symptoms of dementia, more so Alzheimer’s.
“I found that families were struggling to care for these patients who have to be taken care of like children. In some instances, one person has to quit their job and become a full-time care giver to their loved one.”
“Even then, many do not understand how to deal with the irrational behaviour and it becomes a real struggle for the entire family. Seeing this repeatedly made me switch to teaching them about this disease and how to care for the patient,” Salome says.
If there is someone who understands the implications Alzheimer’s has to the family set-up, Elizabeth Mutunga would be that person. Her father showed signs of the disease’s onset in 1992 and the family went through a lot of ups and downs in their quest to care for him.
“My dad did not have health insurance then. We had to pay for every medical emergency and also care for ourselves. Alzheimer’s is not only financially draining, since you have to deal with the person like you would a new-born, the stress can also cause a rift between family members,” she says.
In 1997, Elizabeth went on to form the Alzheimer’s Association - Kenya (ALZ) to offer a support network for families of those with Alzheimer’s disease.
In June 2015, ALZ got into collaboration with At Home Healthcare Kenya to strengthen its capacity in terms of care provision, support and research and was formally registered. According to research carried out by Alzheimer’s Disease International - the worldwide federation of Alzheimer associations, which support people with dementia and their families - there are currently about 46.8 million people living with dementia around the world.
These numbers are projected to nearly double every 20 years, increasing to 74.7 million by 2030 and 131.5 million by 2050. The research also found that there are over 9.9 million new cases of dementia reported each year worldwide, implying one new case every 3.2 seconds.
The report shows that the current annual societal and economic cost of dementia is about Sh81.8 trillion and is expected to become about Sh102 trillion in just three years’ time. This is already happening with figures from the 2010 World Alzheimer Report indicating that the cost of dementia has increased by 35 per cent.
This is a scary fact given that most Kenyan health insurers do not cover people in their old age with the National Hospital Insurance Fund putting a cap at 75 years.
Alzheimer’s is still relatively un-known in Kenya so when a person begins to show symptoms of the disease, the immediate conclusion is that the person has been bewitched. This, Salome says, is the biggest stigma that families of one who is with Alzheimer’s suffer.
“Since people do not have adequate knowledge or information on this disease, many rush their loved one to Mathare Mental Hospital. While that is not bad, since taking this action results in them learning more about the condition, there’s an underlying stigma to it and families have to go through this emotional period alone,” she says.
For Virginia and her family, learning what ails her mother has made it easier for them to know what care she needs and today Rachel is a complete part of their household.
“For my daughters, their grandmother has become a part of their life. They sing and play together and thankfully, I have a house help who understands her condition,” she says.
