In this episode of our series on Human Rights and Dementia we listen to three women who are active in the struggle to overcome the stigma experienced by so many people with dementia that often extends to their families as well. Alisa Grigorovich reads an article that she and her colleague Pia Kontos recently wrote on “COVID-19, Stigma and the Scandalous Neglect of People Living with Dementia”. Phyllis Fehr, a dementia activist, joins Pia in conversation about her experience of stigma and is working to combat it. Pia discusses a new project Reimaging Dementia that will mobilize people to pursue goals identified by individuals with dementia to improve their social and cultural well-being.
As someone who has a family history of Alzheimer’s and who also lives with it herself, Phyllis discusses why the analysis in the article of the ableism, ageism and stigma surrounding dementia is so highly important to her, as she says those phenomena “dehumanize and denigrate the lives of people living with dementia as disposable”.
She emphasizes the need to remember the life experience, the knowledge and the intelligence of people with dementia and that they are vital part of the conversation surrounding it.
Pia goes on to talk about the highly complex issue of this stigma and about needing “an ethic that challenges stigma by broadening the duty of care to include fully supporting the capacity of people living with dementia for creativity, imagination and other positive potentialities.” She says this requires education, lobbying and innovation at every level of society and also requires organizations to come together to achieve this.
Resources for this episode can be found under the following sections on our resource page: