Alzheimer’s: The mamba that devours your brain

“Just keep sitting as still as possible," Grandma Ellie warned me. Like many other afternoons, I was visiting her and we were eating her home-baked Smuts cookies on the porch. She was drinking tea, made in the “right way", and I was spoiled with a soft drink: one of Grandpa Hendrik's cocktail Cokes in a small bottle.

Grandma turned her eyes, indicating the point where the slate path met the house wall. In the bed on the other side, her petunias, snapdragons and capers were blooming. Her eyes were wide.

A long, sprawling creature seemed to be sleeping in the sun. A black mamba.

On her high heels, Grandma tiptoed into the house. She was back in a flash with a milk jug full of boiling water and the broom. She poured the boiling water over the snake, which almost stood upright. Then she killed it: whack, whack, with a few strokes of the broom.

“There you go. Sies,” she said.

“A snake is the devil's messenger on earth," she said as she settled back into her chair.

My grandmother had a beautiful, small figure with narrow hips all her life. She wore a dress or a suit every day, as well as stockings, heeled shoes, rings and a brooch. She had her hair done in town every Friday. She used to drive slowly when I was in the car with her, saying “you are my most precious".

To a 10-year old, this happening was the highlight of the month, because I didn't know it was actually wrong to kill the snake. To me she was my super-grandmother and I bragged at school about my grandma the snake-slayer.

Super-grandma Ellie was my safe haven to whom I often “fled". I often sneaked away from home for a sleepover.

Fifteen years later, a different type of snake started strangling her mind bit by bit. It was as if a giant mamba had settled in her brain. It almost felt like she was sliding down a cliff. Everyone wanted to stop the fall but she kept on sliding, no matter how hard we tried.

Later, it was as if we were hanging on to her with only our pinkies still touching hers. Then, she slipped away to a place so deep that you later feared the dark. A place where you were too scared to turn off the lights at night. You could see it in the eyes and hear it in the voice.

Alzheimer's disease.

* * *

Petra du Toit, the executive director of Alzheimer's South Africa, explains that dementia is the umbrella term for various brain diseases. These include Alzheimer's disease, the most common form of dementia (72%). 

According to Du Toit, one of the biggest challenges is obtaining a diagnosis. This should be done by a neurologist or psychiatrist, but people are reluctant to go because they are scared that their suspicions about their condition might be confirmed. However, this step is extremely important to obtain advice about the numerous ways to adjust your life and that of your family.

Prof Felix Potocnik is one of the few psychiatrists in South Africa who specialises in geriatric patients. He is also an extraordinary professor at Stellenbosch University. “Alzheimer's disease affects one's memory, intellectual ability and personality. A pattern of shortcomings becomes apparent," he says.

Those who know the person well will notice the symptoms. Another criterion is whether strangers at a party would notice there is something wrong. Potocnik says most people will. Someone who may not yet be diagnosed may be unable to maintain a conversation and will tire quickly and even become irritated. Because the short-term memory is affected, people will repeat themselves. Others may become dogmatic or slow down, showing clear signs of a changing personality.

“Many patients become emotional and some of them may become violent. Many spouses tell me this is no longer the person they married,” Potocnik says.

20 years later

Yes, we all misplace our glasses or our car keys. But not all the time or several times a day, and we can retrace our steps and find them. If we forget a specific word, we usually recall it later. That's not the case for people with Alzheimer's. It's gone forever.

Such a person will, for example, put a frozen chicken with the plates in the cupboard, instead of in the fridge. Or forget what a kettle is for. “Patients struggle with complex and instrumental activities of daily functioning," says Potocnik.

People with Alzheimer's disease struggle to communicate by phone. They also no longer initiate conversations and withdraw socially. This is bad for their health, and it is important to obtain a diagnosis so they can still be socially involved and not feel excluded.

Another problem is that they cannot keep track of whether they have taken their medication. Some will not take it at all, others will take it two or three times. “It is very dangerous, and there must be supervision," says Potocnik.

By the time symptoms such as difficulty driving, getting lost or forgetting bank card numbers become apparent, a backlog of 20 years could already have occurred in the brain. Another two to three years before diagnosis worsens the situation even further.

“So many people lose money before they can be helped. That is why it is critically important to get help as soon as possible." Potocnik mentions many patients who lost everything before they could be helped.

The disease causes shrinkage of the brain as well as the widespread death of nerve cells. The beta-amyloid protein occurs in various molecular forms in the brain. It is formed by the breakdown of a larger protein, called the amyloid precursor protein. One form of the beta-amyloid protein is thought to be especially toxic to the brain. It clumps together to form sticky plaques that collect between the neurons and disrupt cell function in people with Alzheimer's disease. 

The other problem is neurofibrillary tangles, which form structures like minuscule fibrous crow's nests. This is the abnormal accumulation of a protein called tau. Healthy neurons are supported  internally by structures called microtubules (tiny tubes), and normally tau binds to and stabilises these microtubules. In Alzheimer’s disease, however, abnormal chemical changes cause tau to detach from microtubules and stick to other tau molecules, forming threads that eventually combine to form tangles inside neurons. These tangles block the neurons' transport system, harming the synaptic communication between neurons.

The build-up of tau and beta-amyloid begins 20 years before symptoms show.

Enough sleep

One of the most important things you can do is to get enough and good sleep, Potocnik says. The harmful proteins in your brain are cleansed when you sleep, especially during the last phase of sleep. Good social interaction is also important: you don't need many friends, but a handful who are close is of great importance. Don't isolate yourself.

And menopausal women who need hormone replacement therapy should continue it for at least two years to limit their risk of Alzheimer's disease at a later stage.

Potocnik says the shrinkage in the brain is visible by means of magnetic resonance imaging (MRI) and computed tomography (CT), especially in the median temporal lobes. However, this is merely an additional diagnosis due to what is known as the 10% paradox: 10% of people will have a normal scan despite having severe dementia, while 10% will show severe atrophy of the brain but will not have dementia.

Is the incidence of Alzheimer's disease and other forms of dementia increasing, or are we just more aware of it? Both are true, partly because we are living longer than we did a century ago.

Between 1% and 5% of people develop the early form of Alzheimer's, which starts between the ages of 35 and 50. This is the hereditary form of the disease.

After turning 60, the statistical chance of developing Alzheimer's  doubles every five years. At age 85, it affects one in three people, and 45% of centenarians have it, says Potocnik.

Unfortunately there is still no cure for Alzheimer's, nor a drug that can treat it. The only thing doctors can do is to mitigate the symptoms, for a time. Again, the sooner you seek help, the better. The available drugs help with cognition, function and behaviour. “The decline of someone with Alzheimer's is not linear; it's fast, then slow, then fast again. That's how it progresses. Medication helps with quality of life but it cannot prolong life," says Potocnik.

There are two classes of specific medications. One class consists of three drugs and the other has only one. The drugs are combined and are initially administered in small doses.

Class 1: This consists of Aricept (donepezil), Exelon (rivastigmine) and Reminyl (galantamine), which are cholinesterase inhibitors. The brain of someone suffering from Alzheimer's disease has lower levels of a chemical called acetylcholine that helps send messages between neurons. These drugs prevent an enzyme from breaking down the acetylcholine and therefore relieve the symptoms.

Class 2: Ebixa (memantine). The second drug's active ingredient is memantine. Glutamate is another substance that helps to send messages in the brain, but in people suffering from Alzheimer's too much of it is released and this damages cells even further. The drug blocks this effect.

There are also other drugs (thioridazine, haloperidol and risperidone) that are prescribed when people experience agitation, delusions, hallucinations, aggression or sleep disturbances.

Specific drugs such as fluoxetine, paroxetine, fluvoxamine, sertraline and citalopram will help with depression.

Potocnik says that by the time people show symptoms and a diagnosis can be made, most have already lost 95% of the cells in the brain related to memory. “We only have this little bit left to work with."

Most recent research

Researchers have been searching for a marker in human blood for years in order to develop a measurable and affordable test for the presence of tau proteins or the beta-amyloid platelets, or even other molecules that indicate inflammation in the brain. Despite some successes, there is no  test on the market yet. This will be a major breakthrough because it will enable significantly earlier diagnosis and treatment of symptoms.

In September last year, Biogen stopped clinical tests of a promising drug (elenbecestat) because the risk outweighed its benefits. The drug had the potential to disintegrate the build-up of beta-amyloid platelets.

There has been no new treatment for the symptoms of Alzheimer's disease since 2003. It is difficult because you are working with the brain which is losing nerves and connections. Early diagnosis is important to preserve as much of the brain as possible.

Du Toit’s tips for family and patients

• Obtain help and advice here. This organisation has branches in all the provinces.
• Dementia and Alzheimer's affect the whole family. Empowering yourself with knowledge can drastically improve everyone's life; it will make a difference.
• Place the emphasis on what someone can do, not what they can't do.
• Plan for the future.
• Don't argue with the person, go with the flow. You may have to repeat yourself endlessly. Communicate like this.
• Don't correct someone if they say something wrong; let them be. It is a behavioural change you will have to adapt to.
• Provide choices: do you want to wear this shirt or that one? It makes thing easier. Find  tips for getting up and dressing here.
• Make bathtime easier by maintaining the usual routine. Fear can play a big role. Here are wonderful tips.
• Activities are important. 
• Take the patient out with you and keep them socially active for as long as possible. Keep the grandchildren involved; it is very sad when they withdraw.
• Gardening activities are therapeutic.
• Find out here what to do when people scratch in drawers. It's part of the disease.

* * *

My grandmother became thinner and thinner. One night I undressed her and helped her in the bath — soaped up the washcloth and handed it to her to wash herself. She looked at me and said: “I don't know how."

At 26, I was emotionally too young for this, even though my body was strong. I wish it had been now, because my mind is so much stronger. I gently washed and dried her. Dressed her. My super-grandmother Ellie's eyes were filled with tears. I couldn't dry them.

The black mamba that devours the mind – that is the devil, Grandma. If only I could stop the black mamba now, while you're sitting on the porch.

At the funeral, my dad walked up to me and pressed a small container awkwardly into my hand. I was shocked. It was a small pill case with her wedding and engagement rings inside. Just like that.

I was named after her. Her beautiful rings, for which my grandfather mined the diamonds himself, are now mine.

“The sister said she wouldn't allow them to remove her rings from her fingers … well until … afterwards," he said.

The black mamba couldn't take everything away from her. Not that as well.

♦ VWB ♦

BE PART OF THE CONVERSATION: Go to the bottom of this page to share your opinion. We look forward to hearing from you!