CVIndependent

Fri09182020

Last updateMon, 24 Aug 2020 12pm

They say you should write about what you know—and I know that as I age, a lot of my friends are beginning to worry that they have Alzheimer’s disease.

A few of my friends have talked to their doctor about their fears, or taken a test. Two friends have been diagnosed; they are being treated and so far have not lost control of their lives.

I can relate. I’ve given up on remembering names, constantly make lists, forget the word I’m looking for in the middle of a sentence, and occasionally can’t find things that I always keep in the same place. Memory lapses can be both aggravating and frustrating—but they may only be due to the overwhelming amount of information that is being taken in by an aging brain, and not a brain disease.

Some people I know assume the inevitable because of a family history: a grandparent, father, mother or siblings who developed some form of dementia. However, researchers claim that you are at a greater incremental risk only if both a mother and father had dementia. Between 6 and 13 percent of the general public will develop Alzheimer's after age 65. Of 111 families studied, in 22.6 percent of people with both a mother and father affected, Alzheimer’s developed—a greater risk to be sure, but still not an overwhelming statistic.

Pharmaceutical companies have taken advantage of our fears by advertising drugs that supposedly slow the progression of dementia or even prevent symptoms. Studies and research are always dumping new data to either frighten or reassure us.

Because I’ve been involved in the local attempt to de-stigmatize dementia, including almost three years of sponsoring the Dementia-Friendly Café (about which I’ve written several times), and because I worry about my own memory lapses, I decided to look into the difference between age-related memory impairment (AMI) and dementia, of which Alzheimer’s is merely one of more than 40 types.

Perhaps the most important takeaway is that while Alzheimer's disease or other dementia becomes more common with age, it is not a normal part of aging.

My mother used to call me, frantic that she could not find her keys. “Mom,” I would flippantly answer, “it’s not when you can’t find your keys that we worry; it’s when you don’t know what keys do.” It turns out I was right!

As we age, our ability to process information, either incoming or outgoing, slows down. Normal AMI means you have a harder time recalling new pieces of information, such as the name of a person you only recently met. I liken it to a kitchen sponge which, when soaked through with water, cannot hold any more: For more to go in, something has to dribble out.

The good news is that AMI is not generally progressive. Many of us are actually better able to do memory-related tasks as we age, like crossword puzzles, than younger people, whose brains can be overloaded with newly learned information. We often find the younger generation has trouble focusing on a single task because they are so accustomed to constant multi-stimulation.

Here are some AMI issues that do not indicate the onset of dementia:

• Occasionally forgetting names or appointments. I have to look at my calendar every day to know what I’m doing; if I write it down, I don’t need to remember it!

• Needing help setting the microwave, working the cable remote or, in my case, using the computer. This is where having grandchildren can be a blessing.

• Forgetting what day it is, but remembering it later. I use my pill dispenser to remind me what day it is when I get up each morning.

• Having trouble finding the right word in the middle of a sentence. This is particularly upsetting when I’m doing my radio show, but I generally come up with a substitute word or find a way to describe what I mean.

• Misplacing something but being able to retrace your steps to try to find it. I must admit I spend a considerable amount of time retracing steps, but at least I remember where to look.

• Developing a routine and being upset when that routine is disturbed. I have a good friend who has lunch every day, in the same diner, at the same table. I think he even orders the same thing every day. He does get upset when his routine is interrupted. He does not have dementia.

Dementia-related memory issues don’t just upset your day; they disrupt your life: Suddenly realizing you don’t know where you are or how you got there; not remembering whether you’ve eaten; forgetting to put shoes on before going outside; requiring others to handle things you’ve always done for yourself, like making appointments or paying bills; having to ask for the same information over and over and over again; not knowing how to play a favorite game; not recognizing family or close friends; being unable to follow or join in a conversation.

The Alzheimer Society of Canada suggests a telling indication that you are experiencing AMI is when you’re worried about your memory, but those close to you are not—as compared to when your family expresses concern, and you’re oblivious to any problem.

If you’re concerned, talk to your family doctor, and then find a doctor who specializes in testing and diagnosis. People in their 40s can develop early-onset dementia, while people in their 90s may be sharp as a tack.

Meanwhile, I’ve developed some coping mechanisms that might be helpful:

• When you get up to do something, say it out loud so you have a chance of remembering why you got up when you get where you were going. Seriously, this works!

• Write things down as you think of them. Don’t expect to remember something that just flitted through your mind.

• Repeat information to make it easier to remember: “Let me make sure I heard you.”

• Always put things in the same spot. For me, it’s the small dish into which I toss my keys when I step inside my front door.

• Get enough sleep. A tired old brain is nowhere near as useful as a rested one.

• Finally, don’t be afraid to talk about this with your loved ones, your doctor, or your friends—but don’t obsess. Let those close to you know that you are experiencing normal AMI issues, and encourage them to let you know if they get concerned it’s more than that.

Then let it go—and get on with your life.

Anita Rufus is also known as “The Lovable Liberal,” and her radio show airs Sundays at noon on KNews Radio 94.3 FM. Email her at This email address is being protected from spambots. You need JavaScript enabled to view it.. Know Your Neighbors appears every other Wednesday.

Published in Know Your Neighbors

The concept of “dementia cafés”—places where people, who all too often feel isolated and socially separated from their communities, can come together to relax and enjoy good company—has evolved and spread from Australia to England to Holland to Japan to San Francisco to Seattle to Santa Fe. It’s estimated that there are currently about 200 such cafés throughout the United States, designed to address the social implications of a dementia diagnosis on individuals, families, friends and caregivers.

Starting anything new is always a gamble, so as one of the founders of the Coachella Valley’s first Dementia-Friendly Café, I am proud to announce that the café is beginning its third year of operation this month.

At the first café, we thought we’d be lucky to have 15 to 20 people; 52 showed up. Clearly, there was a need.

Dementia cafés are not support groups or seminars or daycare. There are no presentations or literature, and no commercial promotions are allowed. It’s simply a place where people can meet others with similar experiences and concerns, and a place where everyone understands the need to just relax and enjoy being out in public without fear or embarrassment. The café is for spouses who need a break from their daily routine, or people who have been diagnosed but are still vibrant and independent, or friends who want to support other friends who are concerned about going out alone.

Too often, those with dementia (and their closest loved ones) tend to sever social connections at a time when they are needed most. There are lots of online sources for information as well as local organizations that offer support groups or counseling, but the café offers a chance to leave the disease at the door and just enjoy an afternoon with others who are happy to be able to do the same. 

According to Palm Desert resident Lynne Bailey, “Socialization opportunities diminish with the disease—for the one with the disease and the caretaker, also. The café is a welcoming place and gives our loved one with Alzheimer’s an opportunity to socialize without explaining, without judgment.” 

One of the first challenges of the founding group was figuring out where to hold the café. Palm Desert resident Dee Wieringa, administrator at Caleo Bay Alzheimer's Special Care Center, worked with management at P.F. Chang’s China Bistro at The River in Rancho Mirage to establish a safe, social atmosphere, where people can come together in a relaxed environment. “So many people feel isolated,” says Wieringa. “There’s so much satisfaction in seeing them come out and socialize.”

We were amazed that some local restaurants with suitable space—and far from busy on a Wednesday afternoon—said our “clientele” wouldn’t be appropriate for their establishment. That kind of attitude was exactly why we decided to call it the Dementia-Friendly Café instead of using a euphemistic name. We were committed to finding ways to destigmatize the word “dementia,” since we all remembered how recently people would only whisper the word “cancer.”

Many of those who attend are dealing with Parkinson’s disease. One is Karen Kramer, a resident of Sun City Palm Desert. “We love coming to the dementia café,” she says. “We meet our Parkinson’s group there as a social event, and it is truly a lift.”

All too often, caregivers get into a routine that becomes self-perpetuating. One founder is Rupert Macnee of Rancho Mirage: “My role with the café was to greet folks and to circulate, bringing people together. The experience went a long way in helping me, along with my sister, to effectively manage our father’s care.

“I became much more understanding of his flights of fancy. I learned to accommodate his dreams and perceptions, without blocking them, or trying to make him ‘normal.’ My expectations of how I expected him to behave changed. I knew that to allay his fears was a No. 1 priority.”

Dementia in its many forms is an ever-increasing reality for many families. With that in mind, Dr. Soo Borson, another member of our original group, is beginning a Memory Café in Palm Springs in conjunction with Temple Isaiah. The first gathering is scheduled for Tuesday, Oct. 25, from 3 to 5 p.m.  Snacks, beverages and music will be offered. Everyone is welcome at no charge.

Meanwhile, the original Dementia-Friendly Café, held on the third Wednesday of each month from 3 to 5 p.m., is entering its third year at P.F. Chang’s. There is no cost to attend. Participants can order drinks or food from the happy-hour menu with separate checks, but no purchase is necessary.

I don’t really believe in horoscopes, although I read them every day. As I began this column, I read mine, which said: “Relationships are not simply about getting your needs met; they are about the profound impact that you have on others and how you are, in turn, affected by their stories.” That has been true for me these past two years as I have greeted everyone who has come to the Dementia-Friendly Café each month. 

Please feel free to join us as we move into our third year.

Anita Rufus is also known as “The Lovable Liberal,” and her radio show airs Sundays at noon on KNews Radio 94.3 FM. Email her at This email address is being protected from spambots. You need JavaScript enabled to view it.. Know Your Neighbors appears every other Wednesday.

Published in Know Your Neighbors

How do you start up something new? No matter how worthy the cause, you need individuals who see a need and are willing to volunteer a substantial amount of time to satisfy that need.

A local coalition has cropped up committed to creating a “Dementia-Friendly Coachella Valley,” composed of individuals who represent local nonprofit organizations, those diagnosed with or caring for someone with a dementia-related disease (like Alzheimer’s), medical professionals and interested citizens.

The DF-CV group recently sponsored the first Dementia-Friendly Café as a way to expand awareness that those living with a diagnosis of a dementia-related disease are still able to enjoy life, socialize and be in a public setting without fear. They wanted to create a “safe space” in which people could come together for a purely social event.

What is a safe space? To me, it’s a place where one can be truly oneself, relaxed and able to be fully expressive without fear of ridicule, judgment, embarrassment or stigmatization based on sex, race, ethnicity, orientation, religion, age, physical disability or any other arbitrary characteristic.

Cathy Greenblat, author of Love, Loss, and Laughter—Seeing Alzheimer’s Differently, was the catalyst for the coalition after the exhibit in Palm Desert of her remarkable photographs of patients with dementia-related diseases in state-of-the-art treatment facilities.

Dee Wieringa, executive director of the new Stonewall Gardens in Palm Springs, made the arrangements for the café with Albert Morales, manager at PF Chang's China Bistro at The River. Morales was enthusiastic about the idea.

“Our company is always telling us to get involved with our community,” he said.

A dining room at the restaurant would be set aside from 3:30 to 5:30 p.m. Those attending could order off the menu if they chose to, get drinks at the bar, or just socialize with others who could relate.

Rupert Macnee, a filmmaker who lives in Rancho Mirage, did the first draft of a flier. With minimal tweaking, it was ready to distribute online, at hospital rounds and on counters and bulletin boards at businesses and organizations throughout the Coachella Valley.

Pat Kaplan, of Palm Desert, one of the honorary co-chairs of the 15th annual Alzheimer’s Association Walk to End Alzheimer’s, came up with the idea of coalition participants wearing purple ribbons, typically an Alzheimer’s disease symbol, so those attending the café would know whom to ask if they had questions or concerns. She greeted attendees warmly, and generally acted as the unofficial hostess.

Other coalition participants who worked the room included Anne Gimbel, regional director of the Alzheimer’s Association; John Wisor, of Palm Springs; Kae Hammond, executive director of the Dementia Help Center and the author of a definitive book, Pathways: A Guidebook for Dementia and Alzheimer’s Family Caregivers (if you need answers and guidance, this is THE book); Soo Borson, a geriatric psychiatrist; and yours truly, who prints nicely and thus did the name tags.

The expectation was that if we could turn out 15 to 20 people on our first outing, that would be a good start. We wanted to learn what the community needs—and what the community will respond to—when it comes to the potentially touchy subject of dementia. Imagine our surprise when more than 50 people showed up! The staff at Chang’s brought in extra tables, added another waitperson, and generally made it a good experience. People were sitting with others they didn’t already know, making new acquaintances, sharing stories and laughing. There was a lot of laughing.

Two women who attended came alone, without their husbands who are living with dementia-related diagnoses. The wives, being sensitive to what their husbands might require, wanted to make sure it would be a safe space. They were thrilled and plan to bring their husbands to the next café. Other attendees included people from all over the valley, ranging in age from their 40s to their 80s—daughters and sons, caregivers, spouses and live-in partners, gay and straight, long-time and new desert residents. It was a noisy, fun, purely social couple of hours with good food, good company and the comfort of a safe space. One attendee described it as “warm and fuzzy.”

The next Dementia-Friendly Café is scheduled for Wednesday, Dec. 3, from 3:30 to 5:30 p.m. at Chang’s. Morales is eagerly looking forward to making everyone comfortable, and the coalition members are planning to spread the word far and wide.

How do you start something new? You come together with people who know how to get things done—people who genuinely care about the issue you’re addressing, people who make time in busy schedules, people who are your neighbors. When’s the last time you got involved in something new?

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. Email her at This email address is being protected from spambots. You need JavaScript enabled to view it..

Published in Know Your Neighbors

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