Narrative agency is important for everyone, including for people with dementia. Why?
Humans are storytellers, and the ability to tell stories is essential to us. We build our identities through the stories we share about ourselves. Our stories help us maintain autonomy, participate socially, and voice our rights. We learn from the stories of others, and the chance to share your knowledge through stories adds meaning and purpose to your life.
What if You Couldn’t Tell Your Story?
You might lose your identity, have your rights stepped on, and be marginalized socially. It would be difficult for others to learn from you, and without the ability and opportunity to share your stories, you might start to lose meaning in life and question your purpose.
This is what people living with dementia face every day.
How Dementia Impacts Narrative Agency
Dementia impedes both the ability and opportunity for people with the diagnosis to share their stories. The symptoms of dementia can make it difficult to articulate thoughts, construct sentences, and share them with others. The stigma, the extremely negative view that people have about dementia, may close their ears to listening. Together, the symptoms and stigma, with the emphasis on disability, impact the interactions people living with dementia have with caregivers and others, limiting opportunities for storytelling. For example, they might not be given the time to speak, or louder voices might overtake their narrative. Did you know that in long-term care, people with dementia spend just 10% of their time interacting with other people?
Giving Them Voice
In the article “Giving Them Voice: Challenges to Narrative Agency in People with Dementia” (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6473304/), the authors cite Clive Baldwin’s definition of “Narrative Agency” as “the ability and opportunity to author one’s own narrative.” The article delves deeper into the importance of retaining one’s narrative agency and the three ways in which dementia negatively impacts the narrative agency of people living with dementia. It also discusses the importance of people with dementia regaining their narrative agency to fight the negative portrayal of dementia in the media and advertising, “so that they can be thought of and treated as citizens and not just as diseased individuals or patients.” We encourage you to read this article and reflect on how you might support people living with dementia to share their stories!
Unlocking the Stories of People with Dementia
To Whom I May Concern® is the key to unlocking the stories of people with dementia. To Whom I May Concern’s Facilitated Storytelling Framework empowers people with dementia to tell their stories and craft their narrative, providing the opportunity to share stories through theatre. To Whom I May Concern Certified Facilitators support people in telling their stories and co-produce a script with storytelling participants using letters that make it easier to share stories and more engaging for the audience. Find out how to become a Certified Facilitator, or contact us at askus@towhomimayconcern.org to discuss how to bring the program to your organization or community, or how to find a Sharing Group of people living with dementia near you.
