An international campaign to raise awareness, eliminate stigma, bring on self-determination, and uplift spirits for September, World Alzheimer's Month
Rabbi Hanna Tiferet Segal asked a few of us in Bnai Or’s Rosh HaShanah service to address the theme of brokenness as an opening to divine presence and healing. She asked me to speak about dementia and brokenness. Here is my offering:
When people think generally about dementia, they imagine loss – for the person who may no longer be able to find or understand words, communicate, remember, or plan their day. Or they imagine the difficulties facing that person’s family. Verbal language is so important to Jews. The sages’ arguments about the meaning of specific words have been passed down orally, in the mishna, and the Talmud. Jews have called themselves People of the Book.
But are words and thinking the most important aspects of our lives? When my father, who had vascular dementia, first came to Bnai Or I asked him what he thought of the service. He found it confusing. Unlike in Orthodox Judaism where men and women wore head coverings, or in Reform Judaism where Jews refrained from wearing head coverings, in Bnai Or some wore and others didn’t. However, he said, Bnai Or is doing something right. They have a minyan (a quorum of ten men and women over the age of 13 required for traditional Jewish public worship). Jews are supposed to pray in a community of no less than 10.
As my father’s dementia progressed, he became much less argumentative. He understood what was important. At Jewish holiday gatherings even at the end, my dad continued to indicate the evening’s first ritual after lighting the candles: to look around and appreciate the people who were present. The shechecheyanu translates to “Blessed are You, God, King of the Universe, who has granted us life, sustained us and enabled us to reach this moment in time.” God granted this to us, not just to individuals.
When our brain cells are damaged, interfering with their ability to communicate with each other, they seem to provide space for love. Salvador Litvak: “To place a hand on that person’s hand says so much more than any utterance can.” They understand a safe and loving presence. Or as they often say to me without words when it’s time for me to leave, they blow a kiss.
In his preface to Cathy Greenblat’s wonderful 2012 Love, Loss, and Laughter: Seeing Alzheimer’s Differently, photographer Ed Kashi suggests that photojournalists are “charged with . . . slapping our viewers in the face with information they must know . . . We must learn to make the world a better place by shedding light on dark places but also by providing solutions and hope”.
In her Foreword, Princess Yasmin Aga Khan, president of Alzheimer’s Disease International, says “Through Cathy Greenblat’s camera lens and her great ability to describe real stories, we are welcomed into a world that is familiar to many and yet unknown by the world’s population in general.” The book is “about seeing Alzheimer’s differently.”
Greenblat says, “How the individual is affected by the disability is dramatically shaped by quality of care. Enhancement of personhood and efforts to maintain quality of life should be our highest priorities…. Much of the decline in capacity comes from care practices that further diminish the spirit of the ill person…. Person-centered care can diminish depression, apathy, agitation, frustration, anger, and guilt for those who suffer and for their caregivers…. Providing occasions for humor, laugher, and celebrations of life are also keys to improved quality of life.”
Lifting one another up
In the dance/movement therapy groups I lead with people with dementia, I am striving not only to offer hope, but to lift one another up. I frequently ask in my groups “Who wants to feel uplifted?” Someone usually answers “Everyone”, as many raise their arms. I respond “Not so; some people like to be miserable. Don’t you know someone who likes to be miserable?” They usually laugh with recognition. With that simple dialogue, I’ve already gotten them to lift their arms in the air and to laugh. But wait, I’m not done. I then say, “The best way I know of to feel uplifted is to help lift others up. Shall we lift one another up today?”
People with dementia don’t disappear unless we disappear from them
Michael Verde, President of Memory Bridge, insists, also in Greenblat’s book: [P]eople with dementia don’t ever disappear. There may be facets of their personality that are no longer in evidence; cognitive capacities that they used to have may have disappeared. But what has not changed is that they have emotional needs just as you and I, including the need to be connected to other people. . . .”
Provide culturally, personally relevant, and fun sensory stimulation
Kamahria Hopkins wrote about the ADTA Talk I gave in her blog article, Dance/Movement Therapy and Dementia: An ADTA Talk:
Donna Newman-Bluestein, M.Ed., BC-DMT, CMA, LMHC, discusses how people with dementia ‘excel’ at tuning into other people’s feelings and how dance/movement therapists are primed to help them engage in the present moment.
‘Many people with dementia are unable to access motivation,’ Newman-Bluestein said. “They need someone, preferably everyone, to provide sufficient sensory stimulation that is culturally and personally relevant to help them connect to their intrinsic motivation.”
The relationship created between the dance/movement therapist and the person with dementia becomes the ‘strongest motivator.’ ‘Once that motivation is tapped and they’re invited to be present – they can be delightfully playful and present. They can still move and derive great pleasure from moving.’
Resources that change the narrative
People need to be shocked out of their misconceptions as well as their apathy. This blog post gives me with the opportunity to provide resources to support people who provide care to people living with a dementia.
Dr. Richard Coaten’s UK and international networks about dance and dementia are inspirational, bringing cutting edge ideas and research to the fore. To subscribe to his network you can contact him at email@example.com . The editorial I co-authored with Dr. Coaten in the UK journal Dementia “Embodiment & dementia – Dance movement psychotherapists respond” can be found here.
Dance/movement therapist Dr. Heather Hill asks “How could people who had a degenerative disease which supposedly destroyed the person come to life in the dance sessions?” Her writing and speaking push us all, not only the dancers among us, to the edges of what is truly ethical and humane thinking. You can read “Movement as the medium for connection, empathy, playfulness”, the article we co-wrote which was published in the UK Journal of Dementia Care here.
In August, I provided a webinar for the ADTA entitled “Cultivating Engagement: Effective Communication Skills for DMT with People with Dementia”. If it is not currently available on demand, it should be shortly.
Christine Bryden’s “Nothing About Us, Without Us!” is a new book, the title of which was also the title of her talk at the 20th Alzheimer’s Disease International (ADI) Conference in Kyoto in 2004.
You can see Dr. John Zeisel’s interview of me on Hopeful Aging on Bedford TV. While the topic is about dance/movement therapy with older adults and people with dementia, much of the interview is my explaining what dance/movement therapy is. Provided is an anecdote about how I used my observation of movement to address an area of concern for a resident and helping her feel good about her concern.
More of today’s leading thinkers re dementia include Michael Verde at Memory Bridge, and Dr. Peter Whitehouse of The Myth of Alzheimers.
And finally, if you haven’t read Tom Kitwood’s groundbreaking (for 1999) Dementia Reconsidered ~ I consider this the bible. Even those of us doing this work prior to his opus build on his theoretical foundations.