I was recently asked why I think it is so difficult to communicate the importance of Dementia Awareness, and how society perceives people with dementia.
Unfortunately, most of society perceives dementia as only memory loss. This is a huge and dangerous mistake. Yes, you can have loss of brain function and be unable to access memories properly, but it’s so much deeper than that. I have seen many people ignore early dementia symptoms because they were only looking for memory loss. The reality is that dementia impacts every part of the brain, including memory: balance, coordination, processing, reason. Because of this, dementia impacts just about every part of someone’s life, both mentally and physically.
Another common misconception is that dementia is curable. While the medical community has made great strides in research and understanding the causes of dementia, there is not yet a cure or treatment. Many family members spend so much time trying to fix it or living in denial they often make themselves suffer even more because it’s just not possible to stop it. This leads to unnecessary discouragement and frustration.
Another recent question I was asked was if I had ever been sitting with someone with dementia who experienced moments of clarity and if I could also share what it might be like to live with dementia symptoms. I have spent my entire career trying to see the world through the eyes of someone living with dementia. To answer this, I shared some of the insights that I’ve gathered from working with thousands of people living with dementia in different settings.
One of the biggest causes of confusion surrounding moments of clarity is that they are often brief. While dementia causes a decline in brain functioning, there are still functions that work. So, it can bring a sense of false hope when someone participates in a conversation as they used to, only to regress just moments later. I’ve learned that these moments usually become further and fewer in between, and that regression is almost always inevitable. Because of this, it’s best to join someone wherever they are in their journey, instead of attempting to ask questions to bring them “back.”
There is a client interaction I once had that helps illustrate the way I believe people with dementia experience the world. I had been working with Frances and her son for several months and, during one of our meetings, Frances walked past me. I could see that she was very far into her dementia journey at this point, staring off very far and seemingly not connecting. However, when I called her name, I told her that she appeared to be sleepwalking. There was a flicker of recognition before she responded with “yes.” I had chills, not only because it resonated for her, but because this moment shaped my belief that that is how they experience the world. We have all had moments that feel dream-like, and this is a way we can connect with and understand the dementia experience.
Our understanding of dementia is continually evolving, as we better understand what exactly is going on in their brains. This comes through my own observations, our experiences and medical research. The best thing we can do is continue to keep open minds and hearts to this so that we can support their unique experiences. This is the power of dementia awareness.
Join them in their reality and you will have more meaningful interactions.