‘Giannina & Lewy’ by Maggie Piazza Carroll

Short film immerses viewers in the world of a grandmother affected by Lewy body dementia
Featured Image: Giannina and Tiziana (her daughter, the film’s narrator) in 1968.
Giannina and Tiziana (her daughter, the film's narrator) in 1968.

What is Giannina & Lewy and how did it come to be? 

Giannina & Lewy is a short film that explores the world of a woman living with Lewy body dementia. A world that is fading away.

Giannina is my grandmother, or Nonna in Italian. Over the last decade my mother, Tiziana, worked to figure out what her mother was grappling with, and eventually, Nonna was diagnosed with Lewy body dementia. For several years I was based in Italy where nonna lives. I visited her regularly during the week and filled in as caregiver on the weekends, sometimes with my camera, sometimes without. The film weaves together an explanation of Lewy body dementia, Giannina’s life (including her struggle with mental illness early on), and a day in the life of someone living with this illness.

She doesn’t see herself as hospital bed–bound and scattered. She often sees herself as she was, years ago. In Giannina & Lewy she will be fully represented, not solely identified by her Lewy body dementia. Giannina bounces from thought to thought, one decade to the next. She is a time traveler. Quick cuts mimic her sudden thought changes. Animation will allow us to recreate what she experiences, feels, and sees.

Giannina & Lewy is the most personal project I’ve ever worked on and I look forward to connecting with others by sharing the finished film.

Giannina and Maggie (granddaughter and filmmaker) in 1988.
Giannina and Maggie (granddaughter and filmmaker) in 1988.

Who initially inspired you to grapple with dementia? 

Nonna’s story is for anyone and everyone, but, hopefully, it can help some families identify Lewy body dementia early on, to better deal with the hallucinations and tremors, and the fast-fading memories before it’s too late. 

I started working on this primarily because I couldn’t find much content about this specific type of dementia, and I saw how hard it was for my mother and her uncle to figure out what was happening to Giannina.

We shouldn’t expect those with dementia to engage in our present reality, but we are the ones who need to enter their worlds and realities.

Tiziana Piazza Carroll

How has working on dementia-related art changed you?

Typically I work as a documentary producer and love, love, love supporting talented individuals and teams on projects. This short is unique, as I feel I have the access and specific perspective to share.

In researching dementia, spending time as a caregiver, and observing others’ stories I’ve learned a lot, including from my mom, who shares this with people learning about dementia: We shouldn’t expect those with dementia to engage in our present reality, but we are the ones who need to enter their worlds and realities.

How have you approached Giannina & Lewy differently from how you’ve approached other projects? 

I always try to approach storytelling ethically and respectfully. This situation is tricky because my grandmother’s dementia is far along, so she can’t officially give me consent to make this. My mother, Tiziana, approves of my approach and is the narrator involved in the film. I’ve shared the concept with caregivers and some people who have early stages of dementia. They’ve responded positively about the idea.

This work is dedicated to: Giannina Luini, my grandmother

Find more from Maggie Piazza Carroll on Instagram and LinkedIn.

What is a Spotlight?

The Dementia Arts Spotlight promotes visual and performing artists who are grappling with dementia through original work or innovative arts programs. The Spotlight—in a Q&A format where artists describe the details and significance of their work or program—connects each artist to the Dementia Spring community. Find examples of prior Dementia Arts Spotlights here. Know of an artist whose work should be Spotlighted? Send them this link!

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