ABOUT THE PROJECT
In 2021, 50 million people are living with dementia globally. In the United States, one in three seniors suffer with Alzheimer’s or dementia at the time of their death. The US government, through Medicare and Medicaid, will spend approximately $305 billion annually to care for people with Alzheimer’s and dementia. There is an additional $250 billion shouldered by family members and unpaid caregivers. Six million people in the US have been diagnosed with Alzheimer’s or another dementia. It’s estimated that only 1 in 4 people with the disease are diagnosed which means it’s possible that 24 million people in the US are living with dementia.
And yet despite the millions of individuals and families affected, dementia is often a taboo subject with limited public awareness or discourse. A diagnosis can become a mechanism for segregating those affected from society, making it easy to see only the label instead of the individual.
The typical narrative about dementia tends to focus on the clinical diagnosis or medical status of an individual, and is all too often depicted using fear, despair and vulnerability. This narrow and incomplete view of dementia quickly becomes a powerful means to distance oneself from their humanity. By focusing only on the narrowest of views, that narrative does little to change the stigma of those living with the disease. In many ways, showing the stereotypical perspectives only makes it easier to continue ignoring the burgeoning health crisis and the individuals themselves.
The goal of this book and travelling exhibit is to destigmatize those living with dementia. To use empathy as a means for connection and understanding. To tell a more complex and complete story of those living with the disease and it’s affect on their families and loved ones.
To give the audience courage to act in ways large and small, you must show the whole story - the fear, loss and despair, but also the love, connection, dignity, and powerful humanity that always remain - in the subjects, in the care-partners, and in the families and communities. That is the only path to evolve the narrative and have a positive social change.
Thank you to the following individuals, organizations, and institutions for supporting this project:
Dr. Randy Bateman
Dr. Rudy Tanzi
Age Friendly Boston
The Alzheimer's Association
The Atrium at Drum Hill
Boston Chinatown Neighborhood Center
Boston College School of Social Work
Cure Alzheimer's Fund
Day by Day Adult Care
Dementia Friendly Boston
Dementia Friendly Massachusetts
Dominantly Inherited Alzheimer Network, Washington University School of Medicine
Jewish Family & Children’s Service
Kroc Center Boston
La Alianza Hispana
MA Executive Office of Elder Affairs
Massachusetts Councils on Aging
South Cove Manor
To schedule an exhibition, gallery talk, educational
gathering or portrait and interview session please
contact Joe Wallace.