By Cameron Camp, PhD
Center for Applied Research in Dementia
July 2019
I was in Europe during much of June 2019, attending conferences and giving presentations on methods for treatment of dementia. At that time, I was introduced to a way of differentiating the “Dementia as Disease” paradigm versus the “Dementia as Disability” paradigm by Jerome Erkes. Jerome is a neuropsychologist and is the Director of Research and Development for AG&D, an organization in France that provides training in the use of Montessori methods and other nonpharmacologic treatments for dementia. This was the demonstration, which I appropriated with Jerome’s permission and used at the end of my visit.
Ineffective Treatment vs Effective Intervention
I was giving a presentation to an auditorium full of people in a small town in Western France one evening. In the front row was a man wearing glasses. I asked him to hand his glasses to me, and he obliged. I then asked him if he now had trouble with his vision, and he said that was the case. At that point I said:
“I am sorry to tell you this, but it looks like you have Cameron’s disease. It involves a gradual loss of ability to see well and is associated with growing older. I have some drugs that I can give you to treat your condition. They are not effective, may or may not be covered by health insurance, and have several unpleasant side effects. Most people stop taking them because of these outcomes. However, they are the only treatments I have to give you, and so you should take them. We are working on developing new drugs to treat Cameron’s disease based on the same assumptions about its cause that have led to the failure to find a new treatment for the last 15 years or more. It is sad that your quality of life will be severely diminished and that now you will become dependent on other people for most of what you need, but that is just the way it is. I can give you the contact information for an organization that has a support group for you and those who will be caring for you, so that you can talk about your frustrations. The organization is one of our biggest supporters in our work to find a pharmacologic cure for your condition. That work also is based on the same assumptions about the cause of Cameron’s disease that has led to the failure to find a new treatment for the last 15 years or more. They too understand that there is nothing more that can be done for you now. Come back in six months to let me know how you are doing. Oh, and remember to send money to support our research to find a cure. You won’t be cured, but maybe someone in the future will be. Have a nice day.”
The audience laughed a few times during this monologue, though it was nervous laughter. I asked the man how he would feel if he never could wear glasses or contact lenses again, and predictably he said that he would not want to live like that. I then said:
“I cannot cure your case of Cameron’s disease, but I have a treatment that can let you compensate for your visual challenges. It is called “eye glasses.” This treatment will allow you to circumvent your deficits to a large degree and give you the opportunity to live a more normal life. Would you like to try this treatment?” He said yes, and I handed his glasses back to him.
Changing Perspective
The point is that when we view dementia as a disability, our perspective changes. We begin to seek and find ways to circumvent deficits, utilize remaining capacities and strengths, provide meaningful social roles, emphasize fostering independence, adjust environments to support these approaches, fight stigma, and to focus on improving quality of life rather than “curing.” This approach is the basis of our training, exemplified in our course on Montessori Dementia Care sponsored by ICCDP and our in-person training available to care communities and residences.
Which treatment option would you prefer?
Cameron J. Camp is the Director of Research & Development at the Center for Applied Research in Dementia, and the original adaptor of Montessori methods for dementia care. He has been conducting research in the field of gerontology, dementia intervention, and cognitive intervention for over 30 years, holds 2 patents, has written several books, and lectures around the world on the use of Montessori Dementia Interventions.
To learn more about our Montessori Dementia Care Professional online course, visit www.iccdp.net/certification-montessori.php. To inquire about having a live training for staff members and organizations, contact Vince Antenucci at vince@cen4ard.com.