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29 Jan 2014

Know Your Neighbors: People With Alzheimer's Disease Are Still People

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Cathy Greenblat is a newcomer to the desert; she’s now settling in Palm Springs after living in Nice, France.

Greenblat earned her Ph.D. in sociology at Columbia University. She has published numerous books and papers, and has lectured in South America, Europe, India, Africa, Israel, the Far East and throughout the United States. She is soon heading for Indonesia and Australia.

In 2002, Greenblat gave up a tenured professorship at Rutgers to pursue her labor of love: photography and its ability to depict the sociology of aging.

Through the Coachella Valley Regional Office of the Alzheimer’s Association, Greenblat has been presenting her work locally. Her photographic display and its accompanying book, published in 2012, is called Love, Loss, and Laughter: Seeing Alzheimer’s Differently.

Initially focusing on person-centered care facilities in the United States with her 2004 book, Alive With Alzheimer’s, Greenblat’s photos now depict not only Alzheimer’s patients in the United States, but also in Mexico, France, India, Japan and the Dominican Republic. Her intention is to challenge stereotypes.

“People with Alzheimer’s are not, as they are often depicted, ‘empty shells,’ completely lost,” says Greenblat. “I believe (photography) to be the most effective vehicle to open people’s eyes … a better way to ‘face’ issues that are generally avoided.”

Greenblat’s photos capture the sheer joy, free laughter and loving interactions people with Alzheimer’s can have, in images documenting the impact of competent care and exposure to music and the arts.

One patient had been all but bedridden for several years—basically warehoused in a nursing-home facility. After his family had him moved to a place that features a person-centered approach specifically for Alzheimer’s care, his demeanor completely changed. Greenblat shows the once-inert man is clapping, smiling, moving along to music and even getting up to dance.

Cathy Greenblat’s pictures are worth seeing for the joy they evoke—the laughter between a grandparent and grandchild, for example, and the genuine affection between caring staff and their patients. Her photos allowed me to fully experience the reality that she describes: “Someone is in there … Quality health care allows people with Alzheimer’s to sustain connections to others and to their own past lives.”

According to HBO’s Alzheimer’s Project, 70 percent of people with Alzheimer's live at home, cared for by family and friends. In addition to hoping to preserve some personal dignity and a sense of connection to home, many family members may not be able to afford a care facility for their loved ones. Unless one is basically impoverished and eligible for Medi-Cal, the cost of such long-term care is not covered by Medicare or most health insurance, and few have prepared for their own situation by investing in long-term care insurance. This is an area long overdue for re-thinking by policy makers.

Phyllis Greene, a Palm Desert resident, had to make the difficult decision to move her husband to a local group-home care facility. They had prepared for this eventuality by purchasing long-term care insurance.

“I realized that when he had no independence left, had become incontinent, and would wander away, it was time,” says Greene. “I couldn’t care for him myself. I couldn’t watch him all the time. I thought I would feel guilty, but to be honest, the impact on me at that point was relief.”

Greene visits her husband several times a week. He doesn’t always know who she is, often mistaking her for his own mother. “He speaks his own language and lives in his own internal world,” says Greene. “He can get very agitated when I don’t know what he’s saying. The main thing is, I know he is getting good care and is in a safe environment.”

Bill Couturié, director of HBO’s Alzheimer Project, says the decision to place a loved one in a care facility can be wrenching.

"Not only is it very expensive to pay for care in a nursing home, but the patient is someone you love a lot—a mother, father, spouse, someone who has taken care of you—so it's only natural to want to take care of them," he says.

But Alzheimer's takes a great toll on the physical and emotional well-being not just of the patient, but of the caregiver as well. “It's not uncommon for the caregiver to die before the patient,” says Couturié.

There is a tremendous cost to the public as well. The Alzheimer’s Association says that “in 2012, nearly 15.4 million caregivers provided more than 17.5 billion hours of unpaid care valued at $216 billion.”

Alzheimer’s is the sixth-leading cause of death in the United States. In 2013, statistics showed that 5.2 million Americans have Alzheimer's or some other form of dementia. (All Alzheimer’s is dementia, but not all dementia is Alzheimer’s.) Those numbers are expected to increase to almost 14 million by 2050 as Baby Boomers continue to age.

Anyone with concerns about memory loss or other possible symptoms of Alzheimer’s can take Ohio State University’s Self-Administered Gerocognitive Exam (SAGE), which is designed to detect early signs of cognitive, memory or thinking impairments. There is no answer sheet—you just follow the directions and then take the test to your physician for an evaluation.

The local Alzheimer’s Association office has helpful tips for caregivers and family, and sponsors caregiver support groups where people can share their stories and solutions.

“My goal is to change minds and hearts, to have this work be a catalyst for education, cultural understanding, and social action,” says Cathy Greenblat. Seeing her photos has expanded my consciousness not only about Alzheimer’s disease, but about the need for a change in public policy regarding long-term care.

My mother used to call me from her retirement apartment in Florida totally hysterical because she couldn’t find her keys. “I know I put them exactly where I always put them, but they’re not there. I’m afraid I’ve got Alzheimer’s.”

“Mom,” I would reply, “stop worrying. It’s not when you can’t find your keys—it’s when you don’t know what keys are for.”

Although it’s good to keep your sense of humor, I’ve learned that Alzheimer’s disease is not something to joke about, no matter how that may alleviate our fears.

Get the facts. Talk to your family and friends about your concerns; reach out for support; lobby for informed public policy, and see Cathy Greenblat’s photos if you get the chance. (She will be featured on Saturday, Feb. 15, at 9 a.m., at the Annenberg Auditorium on the Eisenhower Medical Center campus, 39000 Bob Hope Drive, in Rancho Mirage.)

There IS someone in there.

Anita Rufus is also known as "The Lovable Liberal," and her radio show airs Sundays from 11 a.m. to 1 p.m. on KNews Radio 94.3 FM.

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