My primary training is in The Positive Approach to Care, developed by Teepa Snow. Teepa’s slogan is, “Until there’s a cure, there’s care.” This trips nicely off the tongue and seems too obvious to be profound, but there is so much more meaning in this statement than we might see at first glance.I had this brought home to me recently when I had the opportunity to attend a two-day Alzheimer’s conference in Orlando.
I came away feeling quite unsettled, for two reasons. First, we heard nothing very optimistic about the state of research for a cure. The more research we conduct, the more questions – not answers – we seem to uncover. I did not see even a glimmer of that hoped-for cure at the end of the tunnel.
The second reason was that I heard so little about care. There were some really good workshops about care techniques and resources available to caregivers, but there seems to be so little attention, and money, directed toward the development of an art or science of better care.Here are some of the things I believe should receive more attention and funding.
I want to see more research into the behavioral psychology of individuals living with dementia. Can we learn more about what motivates their behaviors and thereby learn ways to serve and communicate with them more effectively, compassionately, and less disruptively?
I want to see money spent on research into compassionate techniques of care such as hug therapy and humor therapy. We know they work. How can we better understand and develop them so more caregivers know how to apply them?
I want to see research into kinder and gentler non-pharmaceutical, wholistic methods of mood management. The psychotropic drugs currently used were never intended for dementia, and sometimes they bring more problems than solutions.
I want to see publicly-funded dementia hotlines, manned by volunteers who have received extensive training in understanding the personality and behavioral changes that people with dementia experience. These skilled facilitators would be on hand 24/7 to de-escalate difficult situations in the home.
I want to see States raise the minimum standards of care required for professional providers. These have not been updated in 15 years!
I want to see more funding for public and private-sector agencies to provide workshops for family caregivers since many of us will never be able to afford professional care.
Finally, I want to see the creation of learning institutes devoted entirely to the science of better care. Through these, we can produce a whole new generation of young, compassionate medical professionals who understand they are dealing with people, not a disease.
By all means, let’s keep chasing that cure. But let us not forget that until there is a cure, there is care. No, let me rephrase that: “Until there is a cure, there is ONLY care!”
Debbie Selsavage is an Independent Certified Trainer in the Positive Approach to Care, a Certified Dementia Practitioner, and President of the Alzheimer’s Family Organization. Her company, Coping with Dementia LLC, is dedicated to making life better for individuals and their caregivers who are living with dementia. Contact Debbie at firstname.lastname@example.org.