By: Victoria Orlando – Teacher, Artist, Care Partner, Volunteer and Person-centered Soul
I was thinking yesterday, just before listening to a USC webinar about their gerontology program, how the course of Alzheimer’s and other dementias can include as many years as childhood. Few parents would allow their children to live those years in a physical-medical model, depriving them of the psychological, emotional, social and spiritual dimensions of care, yet our culture tacitly endorses this for our elders. I was going to ask the staff from USC if they had begun developing a program for person-centered and creative dementia care, but the emphasis was on how they were developing technologies for elders, with technology being perhaps, a nice link between the old and the young. Respecting their approach, and realizing the program I am hoping to see will not be available next semester at USC, I continue to ask myself, how can we get mainstream education involved in providing compassionate awareness and career options for holistic dementia care?
As care partners, we can find courses from the University of Bradford, or sensitive training from David Sheard’s Dementia Care Matters in the UK, learn from Hogeway, the Eden Alternative, Planetree, MoMA, and many other programs that have led the way person-centered care, and follow the art, music, horticulture and movement therapists who have used their skills brilliantly to create new ways of creating expression for people living with dementia. But, I will not give up thinking how wonderful it would be if a higher learning institution would welcome a full program – not just courses – that specifically addresses dementia care and its many components, emphasizing, in addition to the science explaining any of the illnesses, the emotional, spiritual, social, expressive programs to support it, starting from home-care through residential settings. Cancer used to be such a frightening disease; some people would not even use the whole word, yet now attitudes have changed. Alzheimer’s and similar illnesses need more light, more exposure so they are not so feared. Once fear lifts, understanding and care expands. We might not have cures but we do have models of acceptance and profound compassion and healing inspiration and comfort.
Today, I discovered for the first time that the world-known Mind and Life Institute in Massachusetts dedicated “to building a scientific understanding to reduce suffering and promote well-being” – offers research workshops and up to $6,000 in funding to advance work on a particular project or idea. Creating a holistic curriculum for compassionate and comprehensive dementia care in many settings could fit their initiatives. To build such a program and to have a university or college that truly seeks to include and promote this program to lead the way would be fantastic – and beyond me! The authors of the wonderful white paper you sent me have such a depth of expertise and skills for more of what’s needed to do this. Do you know if creating a full course of study is something the experts are thinking about? (How to get a well-developed program reflecting the CCAL white paper, “The Quality Chasm”, into a school, I don’t know, but out of curiosity, I’ve written a friend and former dean from Rutgers to see how a school creates programs.)
They say, it is important to be nourished by your passion because even if others seem uninterested, a dream has its own life and will give you its energy for your next step. I have no titles or noted expertise in field of dementia, but I can see more in people than many, and it moves me along, just as it moves you and so many others who share this dedication. To offer students the opportunity to develop, create and help deliver holistic programs for people living with dementia as a meaningful career path would be so valuable in generating a life-giving culture change around such illnesses. Given the anticipated number of people diagnosed with dementia ahead of us, my hope is that we will be ready for it; with programs equal to the people they serve.