Monday, July 8, 2019

Art Therapy or Just "Let's Paint?"

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! However ...

The need for me to discuss an issue in GRAY vs BLACK and WHITE came up again recently when the discussion turned to "Using Therapy with People With Dementia."I just want to paint or sing, I do not want Art Therapy or Music Therapy. I just want to enjoy myself, I do not need to have an intervention!" More on this later.

This time around, I wondered 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 th
an 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 urgent needs, battles, change that I have seen emerge around me, many with thanks to Kate Swaffer, and for which I too have been trying to provide positive solutions:

People with Dementia are NOT VICTIMS!

A diagnosis of Dementia is not a DEATH SENTENCE!

"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!

Recently I made a presentation at the Evanston Art Center, in Evanston, Illinois titled, "The Importance of Art in Dementia Care." I told a series of stories about my partner Gregory's involvement with art in general, both at home and eventually at his memory care facility.

These stories were based not on my expertise in the field but rather on my direct and intense experience in being Gregory's Care Giving Partner. Gregory had always been artistic and with his Dementia, helped him to occupy his time.

As his abilities wavered and failed, I was able to come up with artistic alternatives. He also developed a new hobby, working with Oil Sticks, with the help of Nancy, his teacher, mentor, and friend.

You can check out the text of my presentation at which will open in a new window.

Finally, with all that background, let me talk specifically a while about the concept of THERAPY in relation to PWD. I agree that if a person just wants to "do art" or "do music" calling it "therapy" loads the experience. It medicalizes something this just is, should be fun to do, and most likely taps into the PWD's past experiences.

Healing, cure, psychological introspection, being medically treated, interventions? NO
Making adaptations, adjusting skills, being able to analyze a person's ability level and create alternative ways of approaching a skill? YES
According to the American Art Therapy Association:

“Art Therapy involves the use of creative techniques such as drawing, painting, collage, coloring, or sculpting to help people express themselves artistically.  SOUNDS GOOD! and examine the psychological and emotional undertones in their art. DOESN'T SOUND AS GOOD!

“With the guidance of a credentialed art therapist, clients can "decode" the nonverbal messages, symbols, and metaphors often found in these art forms, which should lead to a better understanding of their feelings and behavior so they can move on to resolve deeper issues.” OFF TARGET!

The Association definition does go on to say, “Art therapy helps children, adolescents, and adults explore their emotions, manage addictions. FOR THE MOST PART, DOES NOT APPLY TO PWD!

It continues: improve self-esteem, relieve stress, improve symptoms of anxiety and depression, and cope with a physical illness or disability. SOUNDS GOOD!

Making art for the purpose of making art, as a way to give purpose and self-expression at a level still available to the PWD is what the art should be all about. It is a way to help fill the long hours of a day, to continue to allow for creativity and sharing. Calling it "Therapy," medicalizes the experience and I believe, misses the point. Art is fun. Art is enjoyable. Art is creative. Art fills time. Art gives meaning. Art allows for alternative ways of expression. 

What people in the field of Art Therapy need to do is learn to talk about these activities in terms of how one goes about providing for these experiences to PWD, about differentiation based on skill and cognitive level, about sharing the pure joy of creativity, about helping artistic people continue their involvement with art, and about helping PWD find things to do to fill the long, lonely days; especially as their skills diminish. They need to address, differentiating for PWD in particular, how Art Therapy can and should be used.

What people with Dementia need to do is not take the term "Therapy" literally and be careful not to attach their own form of "stigma" to the term. They need to hear therapists talk in terms of the above and understand that the intentions are good even if the "definition" isn't. Finally, I would rather have a loved one living at a memory care facility that is staffed with Art Therapists (the more the merrier) than one which does not provide these services! 

Meanwhile, after processing all this, 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.

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