From dementia friendly to dementia inclusive: A Q&A with Dr. G. Allen Power

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Dr. G Allen Power will be speaking at Discovery 2019 on March. 8, 2019

G. Allen Power, MD is a board certified internist and geriatrician, and newly named Schlegel Chair in Aging and Dementia Innovation at the Schlegel—U. Waterloo Research Institute for Aging in Ontario, Canada. He is also clinical associate professor of medicine at the University of Rochester, New York, a Fellow of the American College of Physicians / American Society for Internal Medicine, and an international educator on transformational models of care for older adults, particularly those living with changing cognitive abilities.

 

Q: Why did you go into the field of dementia and aging?

A: It was not exactly planned. An opportunity to work in a large  long term care community came up in 1991, when I had been in a very busy private practice for 7 years, and I saw it as a way to practice medicine with a bit more control over my personal/family time. But then in doing so, I am became enthralled with geriatric medicine, and my later introduction to the culture change movement and my work in rethinking dementia created a whole new level of meaning for me.

Q: Your keynote address at Discovery 2019 will be on “A New Definition of Dementia: A shift in the way a person experiences the world.” Please tell us a little about the model you’ll be presenting and why it’s important.  

A: In trying to find better ways to support people living with dementia and reduce the use of harmful medications, I had to look critically at our current approach, in order to find what we were missing. What I have developed is not so much a new invention as it is a shift in paradigms. Our current model of dementia is so narrowly focused on the biomedical aspects that it has led to a medicalization and pathologizing of the lives of people with dementia, and has created a slippery slope to the overuse of ineffective and dangerous drugs.

I began by stepping outside that box and defining dementia simply as “a shift in the way a person experiences the world around her/him”; this enables us to remove ourselves from the mindset of blaming everything on brain disease. I then adapted one published framework for seven domains of well-being to create a proactive, strengths-based approach that goes beyond simply seeing distress as a “symptom of dementia,” but instead addressing root causes and crafting solutions that lie within supporting our shared humanity.

Q: What are two ways that a person can fight the stigma surrounding dementia?

A:  The biggest antidote to stigma and fear is education, but there’s the rub: it also needs to be the right kind of education. Unfortunately, many of our curricula and campaigns actually reinforce those stigmas and fears and end up doing more harm to the individual. We all need to look closely at ourselves–our words and our practices, to ask whether we are truly honoring the person’s dignity, value, and human rights in everything we do.

Another important way to reduce stigma is to always include advocates living with the diagnosis in our educational conferences–meeting them and hearing their stories is the best stigma-buster I have ever seen!

Q: We hear a lot about creating dementia friendly communities, but you prefer the term “dementia inclusive.” How is this different and why is it important?

A: I am a bit of a stickler around language. Admittedly, regardless of the name, the goals are the same. My issue with “dementia-friendly” is that the name sounds rather patronizing and paternalistic to me; furthermore, it reflects the reality that too many of these initiatives are being launched without seeking any substantive input from the very people they hope to support. Saying “dementia inclusive” raises the bar and creates the expectation that those with dementia will have meaningful seats at the table in such planning discussions. People with dementia don’t want us to simply be friendly–they want to be included.

Q: The theme of our conference this year is “Resiliency.” Any thoughts you’d like to share on this topic as it relates to your work?

A:  This is interesting, because i just used this word yesterday in a meeting with a care team in Ontario, Canada. The well-being approach that I have designed states that the root cause of most distress lies in challenges to various aspects of well-being for the individual, such as identity, security or autonomy. My approach teaches carers to work to “fill those empty glasses” of well-being–not just to attend to unmet needs in the moment, but also to create resilience to future challenges.

I equate the situation to putting a kettle on the boil to make tea. If a person suddenly lashes out at someone else without any obvious provocation, I see her as a person whose well-being reserves are so depleted that she is, metaphorically, walking around right at the boiling point; it takes almost nothing to push her over the edge. By replenishing those aspects of well-being, we accomplish the equivalent of “turning the heat down on the burner.” This builds resilience, so that the person is less likely to have such an extreme response to various triggers, and enables us to better support people without having to simply sedate them with psychoactive medications in the name of “safety.”

 

Dr. Power will be the keynote speaker at our Discovery Conference on March 8, 2019. To learn more about Discovery and to register, click here.

#AlzDiscovery2019

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