An appeal from someone living with dementia

Editor’s Note: Jim Mann is a person living with a diagnosis of dementia. He is a member of VOICES – a citizen committee that is an important part of the Canada-wide research program called Translating Research in Elder Care (TREC). On June 13, 2018, the whole TREC team spent at day in Edmonton. The group included researchers from across Canada, the U.S. and Sweden; policy-makers; research staff, leaders in long-term care facilities;
citizens with a diagnosis of dementia; and caregivers. The purpose of the day was to enhance the engagement of people affected by the disease in all aspects of research. Jim Mann told his story.

Presentation by Jim Mann to TREC Citizen Engagement Training Day: June 13 2018

Good morning everyone. My name is Jim Mann and I am Co-Chair of VOICES.

VOICES stand for, “Voices of Individuals and Family and Friend Caregivers Educating Us”.

To start our day together, I would like to take this opportunity to talk about words because words matter. A big one for many of us in the word “SUFFER” or “SUFFERER.”

But today I would like to highlight the word “patient.” As in “Patient-Oriented” research.

I am patient with my own cognitive challenges. But I am no one’s patient except my doctor’s.

Patient is a focus on medicine. It medicalizes everything about dementia and I think we VOICES members are an illustration of what is wrong with that perception.

As Daniel Kuhn was quoted in a Dementia Action Alliance article I read just last week, the biomedical approach to dementia is so deeply embedded in our culture, and it has miserably failed people with dementia and their families.

So my question is “why?” Why can we not be more accurate and less medical? Can we not call it Citizen Engagement? Citizen-oriented research? Shouldn’t we be focusing on the person, and treating him or her as a functioning human being?

Paul Taylor wrote in the Globe and Mail last November that words are powerful. They have the ability to inspire. They also have the ability to stigmatize. In the health field, he said, there’s an increasing realization that the inappropriate choice of words in describing patients can be detrimental to their care – especially older individuals.

I think it’s fair to say that most who are reading this know and understand the stigma surrounding dementia. I think it’s also fair to suggest we all want to reduce this stigma as much as possible.

So I ask all of you to consider how you use the word patient when referring to people living with a diagnosis of dementia. And in the future, please consider using citizen when you speak of your research as being citizen-oriented research.

Thank you.