“So people, patience. We have got to have the patience of those people who were in the queue for Queen Elizabeth’s funeral. Isn’t it fantastic that you are prepared to wait 30 hours, 12 hours. Now that kind of patience. Patience personified.”
According to Joe Klaasen, chair of Dementia SA, this is the first of five qualities needed when caring for a person with dementia.
Klaasen runs family support groups at Rehoboth, a facility in Hanover Park that provides care for the elderly, and the Helen Keller Society in Pinelands.
The other five are “love”, “exercise”, “action”, “support” and “expense”. Put together, the first letter of each of these words make up the mnemonic “please”.
Klaasen expanded on these qualities at a World Alzheimer’s Day event held at Huis Luckhoff, a home for the aged located in Rosebank, on Wednesday 21 September.
With more than 100 different types of dementia identified, the term is used to describe a group of diseases that affect the brain, causing a progressive decline in thinking. Among these, Alzheimer’s is by far the most common. It is described as a progressive neurologic disorder that causes the brain to shrink (atrophy) and brain cells to die.
The seven main symptoms of Alzheimer’s are increased memory loss and confusion, inability to learn new things, difficulty with language and problems with reading, writing, and working with numbers, difficulty organising thoughts and thinking logically, shortened attention span and problems coping with new situations.
According to Marguerite Schneider, a retired Associate Prof from The Alan J Fisher Centre for Public Mental Health at the University of Cape Town (UCT), research results show that approximately 12,5% of older people in South Africa are at risk of dementia, and these rates are higher than the global rate thought to be between 2% and 5%.
“People with dementia are four times more likely to experience abuse than someone who does not have the disease, proving just how challenging it is to care for someone with dementia. There is so much fear and shame associated with dementia, and this stops people from getting help,” said Schneider.
That is why “love”, is so important, said Klaasen.
“When you are the carer for a person with dementia, you have to love them because then you can accept all those things that they throw at you, the insults. It is not the person, it is the disease.”
He said grouped with love is kindness and taking the time to really listen.
“With a dementia person, you have to listen with your ears, with your eyes. Because that person can feel if you are listening to them. You have to keep the dignity intact of a person with dementia, we have to respect that person with dementia,” said Klaasen.
He said that included not arguing with a person with dementia.
“You go along. That spade is blue. That person says that spade is red, you say that spade is red.”
Next is “exercise”, both for the person with dementia and the carer.
“You have to be fit and stay fit, because if you are the primary carer, who’s going to care for your loved one when you go.”
Under “action”, Klaasen said when something happens or if something needs to be done, quickly do it. Don’t wait or procrastinate.
As an example, Klaasen explained that it took his family some time to come to terms with first his mother-in-law and then his sister-in-law showing signs of dementia.
“It took us a while before we had our loved ones diagnosed because we were ignorant and we were in denial and time passes. What happens with dementia is that it progresses very fast, and then it plateaus, and then it progresses fast again.
“So when the person has dementia, act quickly. Don’t waste time. Get the family to be on the same page.”
He said it was also important that people who were taking care of someone with dementia be open to the idea of letting others tend to their loved one. This is where “support” comes in.
“In one of our support groups the other day a lady said, ‘Oh I don’t think I will keep my loved one in an institution’. And I said to her, number one, you haven’t been trained to deal with him, as much you love him and try to help him. You can do that. What happens if your situation changes?”
He added that often support from family members was lacking.
“I say to people dementia is Houdini. Friends disappear. Family disappears. Sommer die kerkmense disappear ook (Even the church-going people disappear). And you stand alone. But do you know where you sometimes get your help from? Strangers. The neighbour down the road or some stranger will come and help you.”
He said they also found that these same family members who didn’t want to offer support at first will suddenly try and do so after a few years have passed.
“Please don’t send them away. Accept it. Wees nederig (Be humble.) Humble yourself, because you’re going to need them some time.”
“Expense” completes the mnemonic. On average, around-the-clock care at a private specialised dementia unit can cost up to R25 000 or more per month. Klaasen said that when he is with younger groups, he tells them to start with their savings.
“Even if you are not going to have dementia, saving is important, but taking care of a person with dementia costs more. So the older you are, the more you need to live off the kitty. So please save.”
