What is Dementia…?

Dementia is a name given to describe a set of symptoms and mental changes caused by the early death of brain cells. As a result the person experiences some memory loss, difficulty in thinking, problem-solving and language. People slowly lose the ability to do simple, everyday tasks. A person may become confused about who people are, where they are and what day it is. Some personality change is also common.

The progressive nature of dementia means the symptoms will gradually get worse, in the end, the person is unable to care for him or herself in even the most basic sense.

Dementia is more common in people over the age of 65, however, there is a growing awareness of cases that start much earlier. According to Alzheimer’s disease International: “As of 2013, there were an estimated 44.4 million people with dementia worldwide. This number will increase to an estimated 75.6 million in 2030, and 135.5 million in 2050. Much of the increase will be in developing countries. Already 62% of people with dementia live in developing countries, but by 2050 this will rise to 71%”.

The rapid growth in the number of older people has created an unprecedented global demographic revolution. Improvements in hygiene and water supply as well as improved health care services have reduced the risk of early death, as a result the proportion of the world’s population aged 60 and over is increasing more rapidly.
As we are all getting older, so are our parents. As they get to the age of 60 and beyond, their physical and mental health may go through changes, some to a greater degree than others. What has struck me is the lack of conversations in South Africa about dementia.

My interests in this subject have been ignited by the fact that I too have parents who are over the age of sixty as well as a grandmother who is over 80. I have started to come to terms with the changes they are going through and how these alter the role I play in their lives. Together with this, in the past 5 years I have worked with elderly people with varying conditions and cognitive challenges, with greater experience in working with Dementia individuals. I am currently working for the Alzheimer’s Society UK and will be studying Dementia at postgraduate level in the near future. This is a subject I’m very passionate about.

In December 2013 while on holiday in South Africa I set out to do some voluntary work with the elderly. When I got there my work took a different angle. I decided to find out what people know about dementia and what services and treatments are available to them. I went to two separate towns in the Eastern Cape and interviewed 500 people. I can sadly say that majority of the people had never heard of the term Dementia, let alone any support services, however, a lot of them knew someone with the symptoms, often stigmatized.

One lady said to me, “Mom has been acting strange for a long time and is always in a state of confusion. We don’t want anyone to see her like this so we just let her stayin the house with our housekeeper”. This lady had no one to speak to about what her family is going through, especially someone to make her understand what is happening to her mother, ways to manage the condition, as well as to help her mother continue living a full and dignified life.

This made me contemplate whether there may be a strong correlation between the terribly high statistics in elderly abuse and fatal incidents in South Africa (also the whole notion of calling the elderly witches, to the extent of burning them).
I then decided to take this further and interviewed a couple of GPs. The overall consensus was that dementia is underdiagnosed and often dismissed as old age, confusion or delirium. Consequently, unnecessary anti-psychotic drugs are often prescribed.

This highlighted how under resourced certain parts of the country are in regards to mental health services, and more has to be done to further educate healthcare professionals in handling dementia and supporting families affected by it.
What really stood out for me is the belief that people of colour don’t suffer from dementia, and this is a huge misconception as extensive studies have been done by various bodies to dismiss this.

Upon these findings I conducted a little desk research about any studies conducted within South Africa about Dementia. I only came across two studies, one done by one of the major universities and the other by the Alzheimer’s society SA (there may be more). This is a good start and so much more still needs to be done.

My research is by no means sophisticated or comprehensive but it has definitely brought to light some very important issues:

  • People need to be educated about dementia
  • Diagnostic services need to be widely available
  • Support services for families are paramount
  • Improved awareness to minimise stigma

What I would really like to achieve from this is to start conversations about Dementia, I would also appreciate your thoughts, opinions and especially your own personal experiences with Dementia and caring for your loved ones.

9 Responses

  1. Olwethu Bulelwa Dekeda

    This article is amazing. As a South African from a small town; I am well aware of the lack of resources and the writing off of old people as “crazy” and “witches” when they display behaviour that is not on par with the norm. This article is well written, obviously researched, factual and relevant. Thank you Palesa.

  2. Kudzai Mukono

    Well written. The symptoms you outlined were evident in my late grandmothers last days. As a family, naive in our thinking we came to the conclusion that she had lost it. Thanks for the insight and shedding light on the seriousness of the situation in developing countries.

  3. Kgomotso Mpshe

    I once attended a workshop for Dementia in 1998 when i used to facilitate for youth programmes… What I have gathered is that Alzheimer can be curbed by being active. What I mean by that is senior citizens when the go to pension they don’t engage in physical and mental activities… Hence you get that problem in developing countries… Unlike our counterparts in developed countries, you would find an 80 plus grannies playing Nintendo quiz games, walking a dog, Soduko’s etc… Ours they wait for their time to pass on and think they fulfilled their dreams of raising a family and live bonanza years left to the gravee… In a nutshell, it can be curbed by encouraging them to be active even after they go to pension… KEEP UP THE GOOD WORK… I’m impressed!!!

  4. Mziyanda

    It is one illness that is in incognito to us in SA, culturally we just assume that human beings are just old, ignoring the crux of the matter, let alone doing diagnosis..

  5. Sabelo

    I commend you.This is a very good start to a very illusive and sensitive topic. The more I read texts about this topic, especially mental health as a whole,including people living with learning difficulties and learning disabilities, it makes me humble and much more tolerant and appreciative of life. I think for a better understanding of the topic, it’s vital to look at both micro and macro demographic data. This is important because it gives us a rounded understanding of the topic,secondly and most importantly, as you have mentioned in your awesome research, it reduce our own preconceptions, since stigmatisation is the most cronic and prevalent challenge. I have worked in hospitals for most of my long stay in the Uk, I know from first hand experience how marginalised and poorly treated people with dementia are,patients left to sit in their own faeces for hours, physical abuse and deliberate negligence. These are the extremes, there are other suttle forms that occure in society,though in developing countries it gets even worser due to lack of awareness, as you again mentioned that some people had never even heard of the word Dementia. We pretty much all do stigamatise, though unaware at most times,and in suttler ways,but we do. The economic impact of dementia is huge, with 70% of the costs occurring in Western Europe and North America, and as mentioned 43% of people with dementia have been diagnosed, it than makes it ever so important to have people like you who take their precious time to raise awareness so that better treatments and policies are in place.We have to keep it at the forefront of our minds that people who stigmatise and marginalise do not know any better,they need help.The minute we forget this, we are in danger of blindly escalating the problem and again we need to approach it with caution, as students of life, not as people who KNOW, because than, with a wrong approach, we are in danger of defeating our well intentioned efforts.WELL DONE PALESA, KEEP IT UP.I’m ever so proud of you.

  6. Abongile Ndlwana

    Wow!Super proud of you..
    There really is a need to educate our people,so many lives could be saved!

  7. Shallot

    Well written & very informative, in our society these conditions have been miss-diagnosed and referred to as madness. I wish more people could access such articles because when we know what we are dealing with it is so much easier to be cautious.

  8. Onkgopotse

    This is very informative,there are many like me out there who are still very much in the dark about mental illness. Well done on spreading awareness.


Leave a Reply

Your email address will not be published.