Journey to a New View: Seeing Alzheimer’s Differently
Love, Loss, and Laughter: Seeing Alzheimer’s Differently documents a growing global movement to reform the care of people living with Alzheimer’s and related disorders.
Rather than focusing on what they have lost, the movement capitalizes on the many abilities and interests they have left, sharply challenging the mindset that writes off people with Alzheimer’s as “empty shells,” lost to themselves and others.
I hope the book, the accompanying photography exhibitions in the United Kingdom, Switzerland, and the U.S., and my own appearances and advocacy will spark a spirited debate that will lead policy makers to recalibrate the delicate balance between the search for a cure in the future and the provision of better care, right now, for the millions who are afflicted and those who care for them.
I took the photographs in Love, Loss, and Laughter over ten years in homes, memory clinics, day programs, and residential centers in the United States, Canada, Japan, France, India, Monaco and the Dominican Republic.
They show people with Alzheimer’s from diverse socio-economic backgrounds living meaningful lives at every stage of the disease: engaging with friends, loved ones, and caregivers; visiting art museums; singing and playing musical instruments; preparing meals; getting dressed up for a day on the town; interacting with pets; or simply enjoying a serene moment of contemplation.
These people and their caregivers had a profound influence on me. They helped change my mind about Alzheimer’s. Based on my own experience with the loss of my mother and maternal grandparents to the disease, I had come to share the stereotypical view of people with dementia, a perception defined by fear and despair about their changing brains and what would happen as a result.
The roots of this project extend well beyond my own loss of family members from Alzheimer's disease. I became increasingly concerned about helping to lighten the burdens of caregivers and increasing the pleasures and satisfactions of patients.
As I note in the book, “Person-centered care can diminish depression, apathy, agitation, frustration, anger, and guilt for those who suffer—and for their caregivers. Keeping tasks simple and maintaining and enhancing the capacities that remain are essential. And the payoff is love and laughter.”
In hundreds of books and pamphlets on dementia that I reviewed in the library of a gerontology institute, I discovered that the most common photograph was of a brain scan.
Moreover, while much documentary photography highlights bad practices in the hope of provoking change, I came to believe that showing life-affirming care that contributes to maintaining confidence, capacities and communication encourages more moments of joy and connection.
My photographs are interwoven in the book with a treasure trove of thoughtful quotations and excerpts from care partners, medical practitioners, social care providers, researchers, and people living with dementia diagnoses who I was fortunate enough to meet in person and through the Internet.
Many have become good friends; this book would not have been possible without their contributions. They present a wealth of practical, upbeat information and advice, and drive home the message that if you know one person with Alzheimer’s disease...you know one person with Alzheimer’s disease.
A final driving force in making this book was my growth of skill as a photographer via workshops that I’d taken over several decades, and a previous photo book that I had published about Alzheimer’s using black and white photography and focusing on one care center in the U.S. The book spawned good reviews and exhibitions that started to get people’s attention. This encouraged me to continue my photographic journey and helped me develop what I think is a different photographic approach to the disease.
Making this book has been a journey of recognition that people living with Alzheimer’s who are treated as whole human beings in positive environments can still give and receive great love, and can share moments of hearty laughter.
As a social scientist, I know how much expectations influence achievement, and I strongly believe that diminished expectations for people living with Alzheimer’s contribute to their disabilities.
If we can change the hearts and minds of people who think Alzheimer’s patients have left us long before their physical deaths, it will help us all achieve our vision of a better life for those living with the disease today.
An exhibition of 84 of Greenblat’s photographs and captions opens in the lobby gallery of Pace University’s Michael Schimmel Center for the Arts in Manhattan, just south of the Brooklyn Bridge, on Wednesday, March 14 and continues from noon to six on Wednesdays through Saturdays until April 29. A symposium on reducing the stigma of Alzheimer’s sponsored by Pace’s College of Health Professions takes place April 25; information is at www.pace.edu/lovelossandlaughter. Other exhibitions and events are at http://www.lovelossandlaughter.com/. The book, published by Globe Pequot Press, is available through online and local booksellers.
Cathy Greenblat is Professor Emerita of Sociology at Rutgers University, where she served for 35 years as a member of the Department of Sociology and Women’s Studies and the Bloustein School of Planning. The author of 14 books and more than 100 articles, she has lectured in the US, Latin America, Eastern and Western Europe, Russia, Africa, the Philippines, China, and Japan. Her photography has been exhibited at major venues internationally. Currently she is an Artist in Residence at the University Hospital Network (CHU) of Nice, France and an Honorary Research Fellow at the International Observatory on End of Life Care, Lancaster University, UK.