Just back from the Texas Culture Change Coalition which was informative and exciting, my presentation Enhancing Quality of Life through the Dance of Interaction well received. Most inspiring was the presentation by psychologist Dr. Richard Taylor, who has been living with the diagnosis of dementia, probably of the Alzheimer's type, for the past 10 years. In his his words, Richard "dedicates his remaining consciousness toward breaking down the stigmas of dementia". His speech was fiery, powerful in his charge to diminish the stigma of dementia with many examples of the ways that even we, caregivers who truly care, continue to unwittingly foster the stigma. I highly recommend Dr. Taylor as a highly articulate and cogent speaker, transmitting his message through humor and authenticity. As he said, "It's hard to stumble when you're talking from your heart because the words just pour right out." Some additional quotations from his presentation:
"Culture Change begins in your heart... You're here to enable, not disable me."
A stragegy for people with dementia ~ "MSU" or Make Stuff Up.
According to Taylor, imagining what it feels like to be a person with dementia through strategies such as glasses being smeared with Vaseline, earplugs to muffle sound, binding one arm to your body, etc. is simply pretending, not empathizing.
"You're pretending by empathizing with a different processor. It can't start with the brain. It has to start in your heart, go through your feelings and up to to the brain."
The end result is, people with dementia "get a lot of pity and not much empathy."
In the presentation that I led and the nonverbal communication trainings that I lead, I do not have people imagine what it feels like to be a person with dementia. I ask participants to experience their own feelings when they experience a mismatch in pacing or are ignored. I ask them to feel their own discomfort with intimacy during experientials. Why do I want people to feel uncomfortable? So that they feel the feelings they are discharging through chatter or giggling. There's nothing wrong with those; it's simply that if we do not experience our feelings, we have no opportunity to reflect and change them and they will be perceived by and affect highly emotionally sensitive people with dementia.
Taylor also spoke of the vast financial resources that are being spent. "Instead of spending research on pills that don't help, spend it on social science research that encourages intimacy among people. . . People need to learn to communicate better".
This one really got me. Taylor said that while it's great that dementia programs are bringing in better quality arts professionals these days, "What happens after that hour? You leave people waiting for the next peak experience". When told that staff never see a resident nearly as expressive as they are in my groups, I am often struck that what that means is that the self of the person with dementia is there inside all the time, with no one to help them come out. That is the reason I teach people to communicate nonverbally and to bring dance to people with dementia. I want others to know what I know that is so very clearly effective. I regularly have the experience as I know other dance movement therapists do of reducing the agitation and improving the mood of people with dementia. Having embodied, aware and self-reflective practitioners on the staff of dementia programs ought to be best practice. I believe that it is grossly neglectful not to utilize the strategies which can be proven effective. However, there needs to be funding to provide such research.
Taylor also spoke about how staff/caregivers will often hug people, often without asking. That is confusing for the person with dementia who may not remember the person hugging. He suggested that caregivers "Learn not to invade their space." "We don't take the time. Just sitting with someone and eventually putting your hand near their hand - works better than asking what's bothering you." These are all skills that are not simply spoken about but practiced in the comprehensive nonverbal communication trainings that I lead.
And finally, Taylor asks:
"What about the person with dementia's higher level needs? Ask what is his purpose today? How is his self-esteem, his sense of belonging today. Then ask about his vital signs."