Mother, son team on a mission to end the stigma of dementia through art
Acclaimed Boston-based photographer Joe Wallace and his mother, Barbara, have embarked on a deeply personal mission to end the stigma of dementia through art, one story at a time. Together, the two have created “Beginning at the End: Portraits of Dementia,” a growing collection of photographs and stories captured through interviews of people living with Alzheimer’s and dementia.
“We sought to change the commonly accepted narrative of Alzheimer’s as scary and full of despair by finding a way to evoke compassion and empathy,” Joe says.
Inspired by experience
The personal tie to dementia runs deep for Joe and Barbara, dating back to when Joe’s grandfather and namesake, “Granddaddy Joe,” was first diagnosed with the disease. Joe rushed to be at his grandfather’s side while Barbara and her mother met with doctors. “I didn’t know what Alzheimer’s was or how it might affect our relationship,” Joe recalls years later. “I was grateful to be there helping, but also really nervous about how to engage with him. I started asking questions. I heard about how he put himself through college on a football scholarship and became a Golden Gloves boxer. He built roads through the swamps of Georgia with a WPA project. It was just the two of us swapping stories about things that meant a lot to us.” As Joe observed Barbara and her siblings on the caregiving journey that followed — first tending to their father until his death in 2001 and then again several years later when their mother developed vascular dementia — he became increasingly dismayed at the lack of public conversation about dementia and aging in general.
Determined to act
Having shared the highs and lows of caregiving — the days of struggle and anguish as well as the moments of joy and connection — Barbara and Joe were determined to act. Inspired by the ability of a powerful photograph to spark conversation, they launched the portrait project, capturing the stories of more than 45 diverse individuals living with dementia. They worked as a team: Joe was behind the camera, Barbara recruited participants, and they both conducted interviews.
More than a diagnosis
Joe is deliberate about getting to know someone before ever reaching for his camera. “We always start with a conversation. We talk about their family, what insights they would share with a younger person,” Joe says.
People talk about the little vignettes of their lives: an incredible Christmas, a memorable walk they took with their parents, camping on the river. That is a powerful lesson.
“Nobody talked about what job they had or how much money they made. People talk about the little vignettes of their lives: an incredible Christmas, a memorable walk they took with their parents, camping on the river. That is a powerful lesson.”
Stories that deserve to be told
The portraits are now part of a traveling exhibition. “I’ve watched people in the gallery stand in front of a portrait for a long time because it resonates with them,” Barbara says. “And I think that means we’re on the right track. You want the viewer to see themselves and then ask, ‘What can I do?’”
Joe and Barbara hope to reach an even broader audience as the project grows. “These stories deserve to be told,” Joe says. “We’re working to engage as many people as possible by using empathy as a means for connection and understanding.”
Below are a selection of portraits from “Beginning at the End: Portraits of Dementia” and excerpts of accompanying stories.
Barbara-Jean “BJ” Fox
BJ regaled me with stories of babysitting her adopted brother and sister and how she loved working with children. Eyes glistening with tears, she said, “I get that from my mother and grandmother.” But when I asked her about her work life, she couldn’t recall the 25 years she worked at New England Telephone.
BJ described losing her brother last year after a battle with Lewy body dementia. But when I asked her if she was afraid of dementia, she simply shrugged and said, “I have wonderful friends, I don’t need to worry. They will help me.”
Ted has an easy, infectious smile. He may not remember you or some of the conversations you’ve shared in the past — but he will be happy to see you and greet you warmly with a firm handshake.
I asked his daughter what Ted taught his children about life and she said, “My dad is an honorable man. I never heard him curse. He never said anything bad about anyone. He came from nothing, but, for him, family always came first. He would tell you to have respect. Work hard and appreciate what you have.”
Edwin was gracious and patient as I fumbled to use my high school Spanish.
I asked his daughter Claudia what Edwin loved most about his life and she said, “He loved his late wife of 64 years and his children. Living a good, useful life and providing for his family. He taught us to treat all people equally no matter who they are or where they are from.”
As we ended our conversation, Edwin looked sad and I asked him, “What’s wrong?” He looked at me and replied, “I just want it to be like it was before.”
Born in China, Helen’s family was displaced when the Japanese invaded in 1932. Later, during high school and nursing school, China was again at war with Japan. Despite this, Helen pursued her dream of becoming a nurse and midwife, and married just before the end of World War II.
When civil war broke out, Helen’s family was sent to Taiwan. Little did they know the Cultural Revolution was taking root and they would not see their parents, relatives or homeland for 30 years.
But when I asked Helen and her daughter Ann about their experiences, I did not hear about adversity. Instead, I heard about a loving, curious and adventurous family with a passion for cooking, a deep sense of faith and a thirst for learning.
To see more photos and read the full stories, visit portraitsofdementia.com.