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.