Once again I find myself replying to Friends With Dementia (FWD's) making comments on their work to change, modify, redirect, and/or correct faulty thinking by the general public about Dementia.
I have always been good at seeing both sides of a situation and offering perspectives which are GRAY to balance the BLACK and WHITE which I often hear.
When I do so with my FWDs, I always preface my comments with, "I do not mean to diminish your feelings or beliefs, and I do support you and join you wholeheartedly in the battle to bring about much needed, positive change in the treatment of, providing for, support to, and stigma attached to dealing by the public with Dementia and its associated diseases!
I wonder why most often these battles for change are couched in BLACK and WHITE and at the risk of offending, I think that the urgency is due to the insidious, progressive, incurable nature of Dementia.
People with Dementia (PWD) do not have time to waste. For them, life is changing too quickly and there is no time to wait, hope, cajole, or wish for changes! The urgency of these battles is NOW, sooner rather than later ... TODAY!
Even though I am at what is towards the end of my life relatively, having lived 75 years and maybe having ten or twenty more to go; my needs are usually met so the urgency does not exist in the same way as it does for the person living with Dementia (or any terminal illness for that matter.)
I might be able to understand the stigma and the "social death" attached to Dementia if only because I am a Gay male who has lived most of his life on the outskirts of societal norms and faced difficulties if only because of whom I love. Also, I experienced it as Gregory's caregiving partner. But that comparison probably pales by comparison. (Play on words?)
When Gregory and my adventure with Dementia began in 2003 and still to this day; STIGMA, SOCIAL DEATH, and SILENCE surround the lives of many of those living with Dementia. The MISUNDERSTANDINGS continue to echo through the hallways of hospitals, medical school lecture rooms, textbooks, and even possibly your own living room!
At the risk of sounding like a "know it all" or being "mightier than thou,' I believe what PWDs do not have time to consider or realize is that ALL CHANGE TAKES PLACE SLOWLY. Sometimes generations of people on the battlefront are needed to bring about change. Change does not happen overnight. Urgency does not cause change! Trite, yes, but true.
This is true especially when you are trying to change what people think, believe, experience, etc. sometimes without any real foundation or reason for these beliefs. Changing cultural, societal beliefs is probably one of the most difficult things to change.
Here is a list of some of the recent Dementia related, urgent needs, battles, change needed that I have seen emerge around me, many with thanks for my awareness to Kate Swaffer.
People with Dementia are NOT VICTIMS!
A diagnosis of Dementia is not a DEATH SENTENCE!
People with Dementia are none-the-less people!
"Nothing about us without us!"
When a governmental policy regarding Dementia is made, people with Dementia must be part of that process!
Dementia is a disability and as such disability services, support, and training should be available to PWD.
At conferences dealing with Dementia, people with Dementia must also be invited to speak!
People with Dementia have human rights and those rights need to be respected!
"Dementia Villages" are a form of segregation and not necessarily the best approach to care!
Rather than creating Dementia-friendly housing, we must make our local communities Dementia-friendly!
Caregiving should be a partnership with the PWD.
Often services for people with Dementia are couched in the form of "Therapy." For example, I don't want Art Therapy, I just want to paint!
In my brief life time of being on the path with those with Dementia, I have seen change in these areas begin to take place. I would say BLACK and WHITE is OK if only because it might make those changes happen a little sooner! We just need to be careful not to toss out the good in things as they exist while we build on them.