LOVE, LOSS AND LAUGHTER

Introduction

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CATHY GREENBLAT
Love, Loss and Laughter: Seeing Alzheimer’s Differently

About the exhibit:
The photographs in this exhibition offer a challenge to much of the visual and mental imagery of Alzheimer’s disease and related disorders. They show that while the losses created by these degenerative brain disease are real, people with Alzheimer’s are not “empty shells” as they are often stereotypically depicted, completely lost to us and to themselves. The photographs show what quality health care looks like. They illustrate that such care allows people with Alzheimer’s disease to sustain connections to others and to their own past lives at a far higher level than is generally believed to be possible. We see that they are capable of experiencing joy as well as sorrow, that loving care can yield loving responses. The seeming incapacities of those afflicted with Alzheimer’s are diminished by those who learn to build bridges to them.
It is commonly known that there is often great sadness associated with a diagnosis of Alzheimer’s and related disorders. What is less often recognized is the great love which many with these disorders receive and give. And there can be hearty laughter which is often not recognized at all. The photographer hopes that these images will help viewers seek ways to make both loving care and laughter even more frequent, and to reduce the fear and stigma that surround dementia.

Cathy Greenblat is Professor Emerita of Sociology at Rutgers University (New Brunswick, NJ), an Artist in Residence at the hospital network of Nice, France, and a Visiting Research Fellow at the International Observatory on End of Life Care, Lancaster University, UK. Click here to read more about Dr. Greenblat and a statement about her work.

About this site:
This site along with an audio guided tour were both created to add another dimension to the photography exhibit. Visitors to the exhibit are invited to listen to an audio tour using their cell phones. This tour includes a range of experts addressing Alzheimer's Disease and the changing face of health care. There is an opportunity during the tour at any time for the visitor to leave a response to the exhibit or to share a personal experience.

This blog was created for those who may not be able to make it to the exhibit. Through this site you can see a number of the images and listen to the audio from the cell tour. Responses can be left in the blog format.

For more information, visit http://www.cpnas.org/

SECTION 1 — If you’ve known one person with Alzheimer’s disease…

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Greenblat's images show that men and women, rich and poor, people working in various professions, as well as those who work at home, suffer from these cognitive difficulties. While most of them are more than 60 years old, early onset Alzheimer’s can affect men and women in their 40’s and 50’s.

At a Kyoto group home, this woman sat in the kitchen area for hours at a time, surveying the comings and goings of other residents, staff and a few visitors. She seemed curious about everyone.

LISTEN: Richard Taylor, Psychologist, writer-speaker, person with dementia

SECTION 2 — A path not chosen

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A family member — a spouse, an adult child, a sibling — becomes the primary caregiver for many who develop Alzheimer’s. As the illness advances, caregiving becomes increasingly difficult, as reflected in the title of a best-selling book, The 36 Hour Day. Assuring safety, coping with aggressive behavior, meeting basic needs for food and hygiene, creating situations for social interaction, and providing stimulation and affection are difficult without assistance from others. Even when trained home care aides and high quality day health programs can be found, the burdens on family members are enormous; without such respite, caregiver fatigue and poor health are common. Burnout and depression can also occur.

Len and Bette, USA
Len and Bette have been married for 63 years. He cared for her at home in the first years of her cognitive difficulties, until wandering and other problems led both the doctor and their children to urge an institutional placement. Len is consumed by her losses and his losses. He told me, “I’ve left everything in the house the way it used to be as if she might come home. But in the long run I know it’s not true. I’ve lost her. She’s here, but I’ve lost her. I’d give you my bronze star if you could bring her back.”

LISTEN: Jan Lipes, Artist and former clinical physician

SECTION 3 — Opening doors to person-centered care

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There is a great deal of awareness of the losses in memory and the ability to communicate as the disease advances. There is less awareness of the ways to bridge the growing gap. While relationships change, there is great power in touch and there are many ways to offer loving care that maintains dignity and that preserves a sense of connection for all.

As a volunteer with the Delhi chapter of the Alzheimer’s and Related Disorders Society of India (ARDSI), Renu has been trained to build communication bridges to people who don’t speak. Mrs. Kumar, Renu’s older first cousin, no longer recognizes her son or other family members.

When they meet, Renu comes very close, touches her cousin’s hand or arm, maintains strong eye contact, and smiles while speaking about things in their shared past. “Usually after about 15 minutes, something I say triggers her recognition of who I am, and with that recognition comes a strong emotional reaction. Then she speaks with me in an animated fashion for a few minutes, before slipping away, back into her isolation.”

LISTEN: Cathy Greenblat, photographer and sociologist

SECTION 4 — Listening to people who don’t talk

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People living with various cognitive challenges often communicate through non-verbal methods. Snoezelen rooms, developed in the Netherlands based on scientific medical understandings, offer varied lighting effects, music, scents, a waterbed, comfortable seating, tactile experiences, and large tubular water-filled columns with bubbles and colored lights. The lighting, atmosphere, and process can be changed depending on the needs and responses of the particular person and delivery of stimuli to many senses assists in calming agitated people. They are used primarily with people with autism but have also been found to be effective with people with dementia to relieve symptoms such as agitation, anxiety, depression, wandering, sundowning syndromes, and to improve mood. In these images, Benedicte Cosseve, a French psychometrician works with three patients in the Snoezelen at the Villa Helios in Nice; she describes the 45 minute sessions in the accompanying text.

LISTEN: Francoise Guillo Ben Arous, gerontologist, formerly director of Alzheimer’s programs in France

Francoise Guillo Ben Arous states, “In cases of extreme illness, patients are often best assisted by care that entails mothering behaviors and caresses, strong commitment and close physical proximity to them. Whether spontaneous or planned such attentions embody the original essence of caring. The energy of the relationship is concentrated during these times where the caregiver meets the patient fully. The desired state of calm, of openness, of relaxation is very difficult to achieve in some patients, but it occurs more naturally in the fetal environment of the Snoezelen room, where light, water, twilight, and smells promote the reduction of the patient’s resistance. The Snoezelen room, developed and produced in the Netherlands based on scientific medical understandings, helps the therapist to offer the maternal model of care as the paradigm of relationship care. It offers a place for relaxation away from the pressures of a group. The Snoezelen room allows patients suffering from Alzheimer’s disease to reduce or relive symptoms such as agitation, anxiety, depression, wandering, sundowning syndromes, and to improve mood. It is a non-invasive and relational approach to helping patients and family feel happier.”

SECTION 5 — Writing the last chapter together

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Hippocrates’ dictum “The art of medicine is founded on observation. To cure sometimes, to relieve often, to comfort always” is brought to life here by showing examples of the continuation of person-centered care through the end of life. Practices that maintain dignity through small attentions to and respectful treatment of patients and family members are effective and well appreciated. There is never “nothing to do” in terms of providing comfort.

Feeding Mahdavi at the residential center, India
From childhood until old age, Mahdavi worked as a maid servant in Mumbai. When she developed dementia, a daughter in the family who considered Mahdavi like a second mother, offered to care for her in Cochin. Eventually she and her family were overwhelmed by the task, and they placed Mahdavi at ARDSI’s respite care facility in 2006. At first she refused to eat, was aggressive and yelled with foul language. Eventually she became more adjusted, and began to accept food. After two bouts of pneumonia, she died in her sleep in July 2008, 4 months after this photo was taken.

LISTEN: JD Talasek, Director of Cultural Programs of the National Academy of Sciences

SECTION 6 - Present-minded

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Sometimes people living with dementia are very much living in the present, without memories of the past or ideas about the future; other times they are “present-minded, elsewhere”. Memory clinics, day care programs, and residential programs sometimes focus on reminiscence, but also seek ways to offer participants meaningful experiences. These have to begin with knowledge of the person’s past interests and activities, and to build on them. Engaging in familiar activities is important to a sense of well-being. Art and music programs are particularly effective. When those activities are guided by an art or music therapist they can take on added power. Personal pets, resident animals, or visit by pet therapy programs bring pleasure to many people.

Preparing a meal in a Kyoto group home, Japan
Since there are only nine residents in most of the Japanese group homes, there is no institutional cooking. Preparation of meals is done by the staff, with assistance from those residents who are able to help and wish to do so. Even those with the most limited capacities did something, whether it was laying out the plates and chopsticks or checking on all the dishes to be served, as was the case of the man here who had been a chef. Staff and residents then dined together.

Former math teacher at the blackboard, India
The staff at the Day Care Center in Cochin understand the need to find individualized activities that are meaningful to the participants given both their backgrounds and their present capabilities. This woman, a former mathematics teacher, likes to write numbers on paper or on the blackboard. The Center purchased the blackboard to help her feel connected to her past, experiencing old pleasures.

LISTEN: Joan Amatniek, neurologist and epidemiologist

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Man in the drum circle session, Japan
Cathy Greenblat writes,"When this patient was brought in to a music therapy session by his wife I admit that I wondered why he was there. It seemed so unlikely to me that he would participate in any meaningful way. How wrong I was! The last of these photos was taken only 15 minutes after the first one. It is good that the staff members didn’t underestimate his ability to participate in this activity. "

Mrs. Morimoto sings, Japan
Mrs. Morimoto was the most cheerful and exuberant resident of a group home I visited in Kyoto. Though she no longer could speak clear sentences, she loved singing. Whenever old songs from her childhood were sung, she clearly articulated all the words.

LISTEN: Heather Davidson, music therapist

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Kay reading at Lakeview Ranch, USA

Kay, a resident at Lakeview Ranch in rural Minnesota, became intensely interested in a book that Laura Bramly had originally created for her mother when she experienced significant loss of her memory and cognitive abilities. Laura found that her mother could be interested and engaged with a colorful, easy to read book. She then produced the Life Scenes volumes for others. At the ranch she told me “Watching Kay, a one-time teacher, sit and read the Life Scenes book, brought tears to my eyes. My mother’s legacy was being passed on and her book was bringing life, joy and learning to yet another person with dementia.”

LISTEN: Judy Salerno, Executive Officer, Institute of Medicine of The National Academies and geriatrician

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Lucille with two therapy dogs, USA
Tammy and Gigi, two pet therapy dogs, have brought delight to many people with Alzheimer’s as well as to many hospice residents. The most enthusiastic response I saw, however, was from Lucille the first time the animals were brought to the hospice where she was living. Astounded at seeing Tammy enter her room, she loudly exclaimed "It's a DOG!!!" Lucille had many visits from the Silverado SilverPaws program until the week she died.

Listen: Jean Caslin, art consultant and former Executive Director/Curator of Houston Center for Photography

SECTION 7 — Laughter — “the best medicine”

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Playfulness and laughter emerge from a variety of sources: parties, joking, celebrations of birthdays and holidays, joyful interactions, and Laughter Yoga.

Jody Ross, a Laughter Yoga teacher in Minneapolis, lead a session with residents, staff, and a few visitors at Lakeview Ranch. Elsie agreed to participate, but at first she had only grimaces to indicate that she knew she would NOT have a good time.

She soon changed into an active and enthusiastic participant. Now a Laughter Yoga program is being developed as a regular activity at the Ranch.

LISTEN: Laura Bramly, writer and dementia advocate

LISTEN: Richard Taylor's closing remarks. Richard Taylor is a writer, speaker and person living with Dementia.

Conclusion, Greenblat Artist Statement, and Biography

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LISTEN: Richard Taylor's closing remarks. Richard Taylor is a writer, speaker and person living with Dementia.

Artist’s Statement
Since 2001, I have been working to change the imagery of aging, illness and dying by combining my background as a Professor of Sociology with my photography. I left my tenured full professorship to focus on work combining photographs and text. I believe this to be the most effective vehicle to open people’s eyes, literally and figuratively, providing a better way to help them face issues that are generally avoided. Since then I have directed my energies to the creation of photographic projects that challenge stereotypical conceptions of the aged, the infirm, and those in the terminal stages of life.
This body of work began at a municipal old age home in Mexico. I then documented a person-centered approach to Alzheimer’s care in the United States; those photographs and text appeared as a book in 2004, Alive with Alzheimer’s (University of Chicago Press). The German edition (Alzheimers und Lebensqualitat) was published in 2006 in conjunction with a three-year traveling exhibition in Germany. In recognition of that work, the University of Houston College of Liberal Arts and Social Sciences awarded me the 2007 John P. McGovern Lectureship in Family, Health and Human Values.

The new photographs presented in this exhibition offer an additional challenge to stereotypes about Alzheimer’s disease. They show that while the losses created by degenerative brain disease are real, people with Alzheimer’s are not “empty shells” as they are often stereotypically depicted, completely lost to us and to themselves. The photographs show what quality health care looks like. The photographs illustrate that such care allows people with Alzheimer’s disease to sustain connections to others and to their own past lives at a far higher level than is generally believed to be possible. We see that they are capable of experiencing joy as well as sorrow, that loving care can yield loving responses. The seeming incapacities of those afflicted with Alzheimer’s are diminished by those who learn to build bridges to them.

It is commonly known that there is great sadness associated Alzheimer’s and related disorders. What is less often recognized is the great love which many receive and give. And there can be hearty laughter which is often not recognized at all. The photographer hopes that these images will help viewers seek ways to make both loving care and laughter even more frequent, and to reduce the fear and stigma that surround dementia.

I am indebted to the administrators and staff who allowed me to become part of their teams and to the patients and family members who allowed me into their lives during difficult times. Thanks to them, we can see how much can be done if we expand not only the resources for quality care, but also our understanding and our imagination.

Much remains to be done to increase public awareness of the issues and to provide healthcare professionals with knowledge and training in dementia care. I believe that photography can be an important tool in creating a new vision of what can be, of how to meet the growing need for quality care. Sebastião Salgado wrote about his work on migrations: “I hope that the person who comes into my show and the person who comes out are not quite the same.” My goal is to change minds and hearts, to have this work be a catalyst for education, cultural understanding, and social action.

ABOUT THE ARTIST
Dr. Cathy Greenblat has been engaged in a cross-cultural photographic project on aging, dementia, and end of life care since 2002. She is Professor Emerita of Sociology at Rutgers University (New Brunswick, NJ), an Artist in Residence at the hospital network of Nice, France, and a Visiting Research Fellow at the International Observatory on End of Life Care, Lancaster University, UK. Dr. Greenblat is the author of more than 100 professional articles and 14 books, including Alive with Alzheimer’s (University of Chicago Press, 2004, and the German translation, Alzheimer und Lebensqualitat. She was awarded the John P. McGovern Annual Award for work on Family, Health and Human Values by the University of Houston in 2007. Her traveling exhibition Alive to the End of Life is on view at the University of Texas Medical School, Houston, as part of FotoFest 2010. A book version of Love, Loss, and Laughter is being prepared for publication.

http://www.cathygreenblat.com/