Creative Expression of Dementia Stories

Curator's Note

Artists and creative scholars have engaged in multimedia storytelling to examine and share stories of human experiences. One such human experience, Alzheimer’s disease and other dementias, has been highlighted in narrative and documentary film. Artists have highlighted dementia and caregiving in fiction film, such as Still Alice, This is Us, The Father, Here Today, and several others.

As creative individuals themselves have faced this experience in their own families, many have produced creative documentary films and related narrative scholarship. Recent related films include The Cuban, It Snows all the Time, The Artist’s Wife, among others.

These creative works feature dementia and caregiving, highlighting individuals and families facing this experience. In the film Still Alice (Glatzer & Westmoreland, 2014), the main character, Alice (Julianne Moore), is a linguistics professor diagnosed with Alzheimer’s disease. In this clip (Lalanne, 2018), Alice gives a speech at an Alzheimer’s Association fundraising event. Speaking of people living with dementia, she says, “Who can take us seriously when we are so far from who we once were? … But this is not who we are; this is our disease.”

She continues, “I still have moments in the day of pure happiness and joy. And please do not think that I am suffering. I am not suffering. I am struggling, struggling to be a part of things, to stay connected to who I once was.”

These stories, like other memorable narratives, help us understand ourselves and others, make sense of our experiences, and resonate with our ideologies and values (Ballard & Ballard, 2011; Langellier & Peterson, 2004).

Academic scholarship can include creative film and multimedia work highlighting the experience of families facing dementia. As a fellow creative scholar who has lived the experience of caregiving for a parent with dementia, I produced a narrative documentary film sharing the story of my mother’s diagnosis and the caregiving experience. My film was a part of my master’s thesis project.

Dementia caregiving organizations can also be a part of these creative journeys. The Alzheimer’s Association (examples linked above) and Hilarity for Charity are two organizations supporting this important work. Join us!

 

References

Ballard, R. L., & Ballard, S. J. (2011). From narrative inheritance to narrative momentum: Past, present, and future stories in an international adoptive family. Journal of Family Communication, 11, 69-84, https://doi.org/10.1080/15267431.2011.554618

Glatzer, R., & Westmoreland, W. (Directors). (2014). Still Alice [Film]. Killer Films, Lutzus-Brown, Shriver Films, and Big Indie Pictures.

Langellier, K. M., & Peterson, E. E. (2004). Storytelling in daily life: Performing narrative. Temple University Press.

Lalanne, M. (2018, March 15). Still Alice the art of losing [Video]. Youtube. https://www.youtube.com/watch?v=2IFWverfeE4

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