About the project

   

In 2020, 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.

 

How you can get involved

I am continually looking for people with dementia to participate in this project. Everyone is different and sometimes I will interview and photograph a subject individually, and other times with a carepartner. Please contact me if you want to participate or know someone who might like to get involved.

Thank you to the following individuals, organizations, and institutions for supporting this project:

Age Friendly Boston

The Alzheimer's Association

The Atrium at Drum Hill
Charlene Manor

Cure Alzheimer's Fund
Day by Day Adult Care

La Alianza Hispana

Massachusetts Councils on Aging
South Cove Manor

xxx

Marisol Amaya-Aluigi

Tim Armour

Sandy Becker

Kathy Bowler

Andrea Burns
Peggy Cahill

Charlotte Carlo

David Chang
Li Chen
Tammy Chen

Olive Fagan
Angie Garcia
Emily Kearns

Pam Macleod
Patricia McCormack
Jay Pollack
Martha Rappoli

John Slattery
Beth Soltzberg
Molly Sonia

Patty Sullivan

Amy Walsh

Beginning at the End:
Portraits of Dementia by Joe Wallace

© 2020 Joe Wallace

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