Years ago, when people had memory issues, it was often referred to as "hardening of the arteries". Back in those years, some people even thought the person was "crazy". It must have been looked at as a mental illness. Even today, some training programs for those responding to emergency calls, lump mental illness, wandering and dementia into the same discussion. I recently reviewed a slide presentation that is often used in law enforcement training. The slide presentation had forty-one slides, and there were only four that had anything to do with behavior issues in dementia. This is sad. Although the quality of, and the effectiveness of mental health treatment and services have improved over the last several decades, the improvements have not reduced the stigma of mental illness.
First, we must recognize that dementia is NOT a mental illness. Early to mid-stages of the disease, people may often function at a very high level. On my good days (my A+ days), I am able to function at a level that is close to my abilities, many years prior to my diagnosis. I am almost three years into my diagnosis. I still have some physicians tell me that they do not see that I have Lewy body dementia (LBD). My neurologist countered their comments by saying, "everything taking place, leads to dementia with Lewy bodies". When this occurs, it causes the person with dementia to second guess what is taking place. It creates utter confusion in the mind of the person with dementia. I know because it did it to me.
Dementia has had a stigma attached to it for many decades. With dementia, there is NO mental illness. The brain is dying and there is no cure. I have ask myself, how do we change the perception of this?" When we think about the fact that many persons living with dementia, feel isolation, "Is this their perception or is it, perceptions that others might have. I will feebly attempt to give my perception.
First, it is difficult for the person with dementia to change their perception. Often their perception is very real to them. Sometimes, people will attempt to change the perception of the person with dementia. I believe that this will rarely work. On the other hand, I believe that some family, friends, acquaintances, healthcare providers and others might have other perceptions. It appears to me that those other perceptions have a direct impact on the isolation that the person with dementia is experiencing.
How can this change so that all parties involved have a better life and able to achieve what their heart might be telling them to do" I believe that all parties are doing the best they can do with the available resources that are present today. I feel that our society, lead by our government officials, have failed to provide the resources to address these issues.
Most often, the person with dementia is doing all they can do. They no longer have the resources or continuous cognitive capacity to effectuate change. It appears to me that the only side of the equation that can change, is that of the other parties. I think human nature in most instances is to care and love other people; however, it appears that when dementia is present, many people have not been provided the resources of how to communicate and interact with the person with dementia. This is no fault of anyone. Teepa Snow does an incredible job with this situation. My perspective is that far too many people are not taking advantage of her wealth of knowledge and understanding. Many of my thoughts on dementia stem from my caring for my mom and my dad who both had dementia and now, my having it.
The reason that I selected the two pictures above is that I feel, we must unmask the stigma of dementia and reveal it for what it is. When we do this, I believe that people will listen. After people listen, they are able to have a better understanding of what it is like living with dementia and have better skills to offer the love, care and compassion that they are so desperately attempting to do. Soon after my diagnosis in June 2012, I developed a passion for trying to help others have that better understanding. Often, it is difficult for me to find the words that would best convey my thoughts.
I still have my dream of a world that has a better understanding of what is taking place with dementia. In the United States, I feel that we are in our infancy in this occurring; however, we are forging ahead and making progress.
©2015 Robert Bowles
Robert Bowles, Jr.