Improving the quality of life for people living with a dementia
As a person whose life is devoted to improving the quality of life for people living with a dementia, I get links to the latest information daily. In fact, the quality of my life is greatly enhanced by the people whom I’ve gotten to meet along my way. Daphne Johnston is one such person. The first link I’d like to share today is about the work of this amazingly inspiring young woman. You can read a bit about how 5 years ago Daphne began a hugely flourishing day program in this article, “First UMC’s Respite Ministry thriving in caring for those with memory loss“. My favorite quote from Daphne in the article: “We make a concerted effort to help our participants feel they are part of something bigger than dementia care.” Don’t all of us who have or care for someone with dementia want to feel that way? Every person who attends her program sees themselves as a volunteer. Programs around the country are seeking Daphne’s guidance to implement and replicate her program.
Yet another link is to the Northern Berkshire Community Television webcast, Speaking of Alzheimer’s, in which Beth Hinkley Mougin and guest Karen Gold talk about the many wonderful support services available through the Berkshire Alzheimer’s Partnership. One of those services is the free 9th Caregiver Expo on April 24 at the Crowne Plaza in Pittsfield, MA. In addition to the many other resources provided, including free dinner for caregivers who sign up by Sunday April 16, I will be a guest speaker. I will be speaking during dinner, around 5:30 p.m., providing practical tips on caring for someone with dementia, including reaching those who’ve lost the ability to communicate via words. It is interesting for me to listen to Karen try to describe what I will offer. While she has provided art therapy and music programs, I don’t think she can begin to imagine what dancing with folks with dementia looks like. That’s why I hope to have some video footage. Also, and importantly, if you are in the Berkshires and dance with people with dementia, I would love to know about you so that I can share those resources. Email me at donna@danceforconnectiondotcom. In addition, I hope to share how the arts are helpful, not only for people with dementia, but as a way for caregivers to process their feelings about the struggles. You can see some poems that I’ve written for a person with dementia, and as a way for me to cope with my dad’s dementia here. The arts are such a powerful way to turn suffering into beauty and help us find meaning.
Speaking of turning suffering into beauty and helping us find meaning, just a few words about the class I recently ran for 92Y in NYC. One of the things I’ve learned in dancing and communicating with people with dementia is how much we can learn from one another, regardless of abilities. Huge thanks go to my teacher, mentor and friend, Norma Canner for this understanding.
Understanding the great value of appreciating mutuality is not one of the hallmarks of the western culture, in my experience. I can’t begin to convey how rich my life is for the people who come to learn or dance with me. People who are interested in learning how to dance or communicate nonverbally with people with dementia are special, sensitive people. We had a very joyous, lively group with older adults and people with dementia after which Naomi Goldberg Haas of Dances for a Variable Population said: “Thank you so much for an incredibly uplifting afternoon. Your session was terrific! I loved moving with so many inspiring ideas – your words, your props, your music, your embracing of all. Thank you for including me!” Those are words of high praise coming from someone who does such inspirational work with older adults in NYC.
Yet another link I’d like to share is this article, “Plotting the demise of Alzheimer’s” in the Harvard Gazette. In the article, Dorene Rentz, an associate professor of neurology at HMS and the Brigham and co-director, with Sperling, of the hospital’s Center for Alzheimer Research and Treatment, is working on a study to better understand A.D. Rentz said: “All we’ve done is fail.”
So far, research has not come up with a cure or prevention for A.D. But what isn’t failing, what we do know – using the arts are a great way to live in the present with dementia. Even though the evidence is mostly anecdotal, that is because there is limited funding available for research – and importantly, because anecdotal evidence is considered inadequate. Yet, if you were to come and visit a Dance for Connection group, the evidence of your senses would be eminently clear – joy is the most prominent emotion in the room. The next Memory Cafe I will be leading is May 17, 2 – 4 PM, Newton Senior Center, 345 Walnut St, Newton, MA 02460, 617-796-1660. I’d love to see you there.