We are certain that it comes as no surprise that there is a specific stigma associated with dementia. It is not something that families want to openly talk about to their friends or sometimes even admit to themselves. We’re here to tell you that not only is it perfectly acceptable to talk about your loved ones with dementia, but it should be encouraged especially to create dementia awareness.
Reducing the stigma
Reducing the stigma situated with dementia can only be achieved through better public awareness and understanding. Many communities consider dementia as a normal part of ageing, mental illness and sometimes even something metaphysical linked to supernatural or spiritual beliefs. These are stereotypes that we at Livewell want to break down. Because of these misconceptions and assumptions, many people with dementia are often isolated, or hidden away, because of the possibility of negative reactions from neighbours and relatives to behavioural and psychological symptoms. The idea that nothing can be done to help people with dementia often leads to hopelessness and frustration for the families.
The best way to create awareness is to be open and direct with your friends and family. Having a parent or loved one with dementia is absolutely nothing to be ashamed of. Engage with others about what dementia actually is and the treatment and care available. Always be sure to share accurate and factual information, avoid hearsay and always research information before you pass it along to others. Try not to be discouraged when friends and family do not respond the way you would like them to, remember that dementia can be a sensitive topic so approach it calmly and with an open mind.
Some of the myths associated with dementia include the following:
- There is nothing you can do about dementia once you have it
- If someone in your family has dementia, you will have it too
- People with dementia are agitated, violent and aggressive
- Dementia is just normal ageing
- People with dementia can’t function, can’t have a quality of life, and can’t enjoy activities
- All types of dementia are irreversible
- There’s no point in visiting the doctor if a diagnosis has already been made
Talking to your loved ones about their newly diagnosed dementia can be a sensitive topic and there are pros and cons. At Livewell and prior to the move to Livewell, we encourage insight into the person’s own diagnosis – if this is possible and realistic. This will assist the person when they feel disoriented and frustrated as to why they can’t remember day to day things. This is however the families own discussion and should be dealt with carefully.
If we start by breaking down these myths and educating people about dementia, it will help create a more consciously aware society. This type of society is fundamentally needed to shift the paradigm of dementia in South Africa. It will help more people living with dementia get the help and support they deserve, but it also helps families recognize early signs and symptoms, ensuring help is given earlier rather than later. If you have a family member living with dementia, you are one step closer to being part of the solution to break down misconceptions and create awareness for dementia in South Africa. Never forget that you are not alone, we are all in this together.