Reporting from ADI in Singapore:
Hilary Lee (of Dementia Care Australia) and I had an enjoyable and well-received talk at the conference today. I began by using the framework of person-directed care set forth by the Eden Alternative to develop a new “experiential” approach to dementia, and contrasted it with the traditional biomedical model. Hilary followed with a practical application of these principles in the Spark of Life program. We had an audience of several hundred attendees and our talks were moderated by Dr. Peter Rabins, who arguably wrote the first mass market book on Alzheimer’s: “The 36-Hour Day”. “Best Friends'” Virginia Bell and Deborah O’Connor from the University of British Columbia also presented in our session.
During the talk, I also challenged the assembly to look critically at the dialogue around Alzheimer’s advocacy. Too often, the urgency of the need for resources is portrayed in terms of “dementia as tragedy”. While I don’t intend to minimize the seriousness of the disease, adopting the dementia-as-tragedy tone can have several negative consequences.
This approach can increase public fear of the disease, which is a barrier to education. It can further stigmatize people with the disease, which creates a barrier to early detection. (After all, who would want to get tested, knowing that they may be treated like less of a person after the diagnosis was confirmed?)
It also causes a declinist perspective in researchers and clinicians, who begin to view the person for their illness, rather than as unique individuals who happen to share a diagnosis. And it has led us to devote the vast majority of our resources to the “Holy Grails” of prevention and cure, while giving comparatively little to improve the lives of millions who live with the disease, and will be neither prevented, nor cured.
It is time to advocate from a position of hope, rather than despair. We are discovering new ways to create engagement, meaning and growth into the late stages of Alzheimer’s. We can only proceed effectively with public education, acceptance and support. People with dementia don’t need us to pity them – they need us to empower them.
Hilary and Al with ADI President, Princess Yasmin Aga Khan, whose mother, the actress Rita Hayworth, had Alzheimer’s Disease.
Hilary and Al with author/psychologist Dr. Richard Taylor, who gave a Keynote on his own 6-year odyssey as a person with Alzheimer’s Disease.