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It’s funny how seemingly unrelated events can coincidentally coincide.

I recently wrote about Cathy Greenblat and her stirring book, Love, Loss, and Laughter, featuring photographs of people with various types of dementia and reminding us that “someone is in there.” Cathy has inspired a local coalition of individuals and organizations to make Coachella Valley into a “dementia-friendly community,” patterned on similar projects around the world.

And now for something seemingly unconnected: The Board is a group of men, mostly of a certain age, that gets together monthly for lunch to gab, exchange stories, listen to speakers and generally socialize. They also occasionally have an event where womenfolk are invited. I recently attended just such an event, the day after attending a meeting of the “dementia-friendly” group, where one of The Board’s members, Larry Delrose, showed a film he wrote and co-produced, called Night Club.

Delrose’s film includes such film stars as Mickey Rooney, Sally Kellerman and Ernest Borgnine, in a story that centers on a residence facility where many patients have dementia. The film shows both the compassion and care given to such patients, as well as the callousness often encountered. It includes scenes that members of the audience laughed at nervously—possibly because the film showed many people in a situation in which we’re afraid we’ll one day find ourselves.

Delrose is a Rancho Mirage resident who has been in the Coachella Valley for 34 years. At 63, he has been married for 40 years, and has two daughters and five grandkids. He previously was a real estate investor, wrote a book called Directions to a Happy Life, and began acting and movie-making later in life in an effort to “pursue what you love to do in life.”

Why a movie on this subject? “I thought the movie business needs more mainstream movies that address social issues (instead of) extreme violence, dysfunctional families, horror and action,” says Delrose. “I thought I could present socially aware subjects to the moviegoer in a way that they could learn something about life, without being preachy, corny or too depressing.”

In her pursuit of photographs of people with dementia-related illnesses, Greenblat was determined to capture what makes them laugh, sing and dance. Delrose affirms that “music, dancing and being around younger people can help all older people feel better, especially music, (which) is like a free anti-depressant drug.”

This conclusion led Delrose, in part, to Night Club: “I want to make movies that expose a social issue for thought, make it a great script, get some well-known skilled actors, and bring in lots of kids and music. Night Club was a test for me to see if my idea was right, and based on how I saw people react, I now know that I’m on to something.”

What would it take to de-fuse the stigma attached to a diagnosis of “dementia”? We had a president, Ronald Reagan, who may have already been experiencing the early stages of Alzheimer’s while still in office. Singer Glen Campbell went on tour after his diagnosis, and only recently had to cancel performances due to escalating memory issues—although he is continuing to speak out about his condition.

Other famous people have gone public with their diagnosis and have helped de-stigmatize Alzheimer’s: actors Charles Bronson, Charlton Heston, Rita Hayworth, Burgess Meredith, Peter Falk, Estelle Getty; renowned composer Aaron Copeland; boxer Sugar Ray Robinson; singer Perry Como; and basketball coach Pat Summitt.

I can remember when the word “cancer” struck fear even in those who had not received the diagnosis. We whispered the word. We didn’t talk publicly about it. Then first ladies Betty Ford, Rosalynn Carter and Nancy Reagan shared their own experiences with us, along with many others. Now cancer is recognized as a disease that can be detected and in some cases cured, or at least somewhat controlled; we have learned not to shun or fear people who have it. We speak out about it and walk with signs to raise awareness. Although we still fear hearing the diagnosis, we no longer worry about “catching it.”

A similar transformation took place around HIV/AIDS. None of us want to be told we have it, but we no longer fear being around people who have been diagnosed, as when people were afraid to send their children to school because they might “catch it.”

That is one of the goals of a “dementia-friendly community”—to not only de-stigmatize those with the condition, but to educate ourselves and our communities to understand that “someone is in there.”

The next time the person in front of you in line at Starbucks is confused by too many choices, or someone at the checkout counter at the market has trouble counting out change, instead of getting impatient and huffy, offer to help. That is the first step toward the Coachella Valley being a dementia-friendly community—and we all have an investment in that.

You can make a difference.

Published in Know Your Neighbors

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.

Published in Know Your Neighbors