Let’s Talk About Dementia by Hendrik Baird…

I remember my great-grandmother quite well. Even though I was very small, she made a big impression on me. But as I grew up, I found I couldn’t have a conversation with her. Her mental capacity was that of a small child, even though she once was a powerful and strong woman. I was made to understand that this was what happened when you grow old, your mind goes and you become like a child again. A few years later I remember walking into the front room of my grandmother’s house and “Poor Granny”, as she was known, was struggling through the process of dying. It scared me, mostly because nobody wanted to talk about it.

Years later my other grandmother was diagnosed with Alzheimer disease and sent to a facility. We never got to visit her as we were told that it would frighten her, because she constantly forgets who people are, thinking everyone a stranger. For many years I knew she was still alive, but that was about all, apart from the fact that she had apparently forgotten that she smoked. When she passed I went to the funeral and sitting in the church I started wondering about the similarities between the two grannies. I concluded that if life ended like this, then old age was indeed to be feared!

Today, those are distant memories and, having added the word dementia to my vocabulary, I no longer fear old age. I understand that dementia is an umbrella term for a number of diseases and conditions that affect the brain, memory, motor function, indeed the whole body. It is terminal, but much can be done to prevent it in the first place. And it is not inevitable just because of growing older.

While stigma may have been understandable fifty years ago when there was not  much knowledge available about the diseases causing dementia, today we have no excuse not to talk openly about Alzheimer or Lewy Body disease, or even vascular dementia. In a world where information is but a click away and with extensive research ongoing, everyone should be talking more about this topic. Especially in the light of the fact that some 50 million people worldwide are living with dementia. This means someone in the world develops dementia every 3 seconds. And the scary part is that this number is expected to triple by 2050, rising to 152 million.

By talking about dementia we can start to address the concern that 80% of us have about developing dementia at some point. A quarter of us still think nothing can be done to prevent it. We need to talk about the economic impact as well as the personal impact. Economically active people become inactive due to their disease, while the cost of care can be substantial. At the same time there is the cost to family, as well as the toll it takes on care workers. Half of carers worldwide say their health has suffered as a result of their caring even whilst expressing positive sentiments about their role.

By talking about dementia we can create broader awareness, which could lead to action from government to dramatically increase awareness campaigns, while introducing detection and diagnostic programs to meet the targets of the World Health Organisation (WHO) global plan on dementia.

In the same way a butterfly’s flapping of wings in the Amazon may be the cause a storm on the other side of the globe, so a simple conversation about dementia may have far-reaching effects. Especially in this age of Covid-19, where so many people are not reporting the symptoms they may be experiencing or not accessing the services they need because of lockdown restrictions. Again, with so many online services on offer, there should be no excuse. By talking about dementia we can make better plans for those suffering from dementia and provide better support and services to them. By doing so we will improve the lives of people who are living with dementia, as well as their families and the people who care for them.

My own lack of knowledge led me to have inaccurate assumptions about dementia and its effects. I stereotyped “Poor Granny” and made fun of how she behaved, not realizing that she was sick. Today, working at a facility* for people living with dementia, I realise how hard it must have been to care for her. I now acknowledge the sacrifices my grandmother and her sister made by looking after “Poor Granny” to the end. I also better understand the anxiety a person with dementia suffers on a daily basis because of their disease.

I am sharing this with you so as to start a discussion. September is World Alzheimer’s Month. It is time to break down the stigma and negative attitudes in our communities. Let’s talk about dementia.

*Hendrik is the Administrator at Resthill Memory Care (Pty) Ltd.