Let’s be honest, people are terrified of dementia. We work hard to hide a dementia diagnosis behind a wall of silence built with bricks of fear, shame and stigma, much like we spoke about cancer 40 years ago (you know, the Big “C”, in hushed voices), But with cancer, something changed along the way. We learned to talk openly and acknowledge the human experience of living with and possibly dying from cancer, and eventually having cancer became a “courageous battle” instead of a shameful illness.
As with cancer, society needs to find a new way to talk about dementia. We tend to focus on the end-stage of the disease, conjuring up the image of a dying person who is now an “empty shell”. But dementia has a beginning and a middle, and it’s vital to remember that people are LIVING with dementia. Those with dementia struggle to be present in their lives, to work through the “fog”, to find humor in the scary and ugly moments, and to continue to live life and love to the fullest. It is a brave and serious fight. It is a DIGNIFIED fight.
So like with cancer, we need to change the image. And as we did with cancer, we have to look dementia in the eye in order to understand empathically how a person lives and loves in the presence of this disease. It’s a challenge. It’s scary. And it’s what makes us human.