Innovations in Dementia Care - Reducing the Stigma




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Nov 30, 2017
by Salzburg Global Seminar
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Innovations in Dementia Care - Reducing the Stigma

Participants begin second day of discussions by reflecting on the stigma around dementia Participants began Wednesday’s discussions by reflecting on the stigma surrounding dementia

Stigma is difficult to define, but you know it when you feel it. That was the message which started the second day of the Salzburg Global session, Changing Minds: Innovations in Dementia Care and Dementia-Friendly Communities.

The message was delivered by William Hu, assistant professor of neurology at Emory University, as he moderated a discussion which explored how stigma around dementia varies from country to country and the different ways it is being addressed.

Raising awareness of dementia and improving education is not just about providing communities with a greater understanding. It’s also about changing the self-perception of those living with dementia.

Chris Roberts, a Dementia Friends Champion and Ambassador for the Alzheimer’s Society, said parts of the media had accentuated the stigma around dementia, and that society had reached a point where people failed to realize there was a beginning and a middle to every illness.

Roberts, who has a diagnosis of mixed dementia, vascular damage and Alzheimer’s, suggested people should stop using the word “dementia” and start referring to the different conditions by their own names.

Participants considered the different ways in which the stigma around dementia is reinforced. They reflected on the misuse of language and the patient and carer roles which are often assigned at the point of diagnosis.

One participant said stigma should be challenged from the ground up through education. This point was echoed by another participant who called for a change in curriculum that would provide more opportunities for students to interact with people living with dementia.

Participants shared experiences between themselves throughout the session. The group heard how one man living with dementia in Nigeria was unable to openly share his experience, despite wanting to. The people around him would not let him. The stigma was so strong they feared they would be accused of witchcraft.

To reduce the stigma, a new behavioral change will have to be generated. In Indonesia, the media has played an important role in this regard. A series of multimedia campaigns have increased interest in the subject and has led to requests for more people with dementia to tell their stories.

Advocates and people living with dementia can continue to breakdown barriers by engaging with people from their own countries and communities.

The session, Changing Minds: Innovations in Dementia Care and Dementia-Friendly Communities, is part of Salzburg Global Seminar multi-year series Health and Health Care Innovation in the 21st Century. This year’s session is held in partnership with The Dartmouth Institute for Health Policy & Clinical Practice and The Mayo Clinic, with support from the Robert Bosch Stiftung, the Tsao Foundation, and the University of Texas.