“We are here to see Dr. Nguyen Thanh Binh, head of the Department of Neuroloy and Alzheimer Diseaese,” I tell the guard at the National Geriatric Hospital of Vietnam in Hanoi, showing him my folded paper with her name printed on it.
He grins, then points to a full size sheet of paper in the security booth’s window with our names printed on it. We follow him into the hospital and up a flight of stairs. After a short wait, Dr. Binh warmly welcomes us into her office. She has a table ready with chairs and tells us she has invited others from her department to talk to us as well. Another Dr. Nguyen Thanh Binh arrives. Her Phd thesis was on easing the burden for family caregivers. Dr. Ngan Thi Hong Anh, doctor of rehabilitation, joins us. She seeks non-medical solutions for improving quality of life. Nguyen Ngoc Anh, RN, completes our group. She works daily, communicating with and caring for people who are living with dementia.
For two years. Dr. Binh and her team have been running a pilot study, inviting people who are living with dementia to attend a three day a week program that focuses on engaging socially, physically, emotionally, and intellectually. They use music therapy techniques, they bake traditional cakes together, and they enjoy various arts and crafts projects. All these therapies offer physical and occupational therapies, as well as vital social interactions. The project has been a huge success, with both family caregivers and people living with dementia enjoying the results. Besides giving the caregivers a much needed respite, families report improved quality of life and and increased abilities in the activities of daily living.
“Symptoms improve,” Dr. Binh reports. “Patients want to keep attending and families have their burdens eased.”
Dr. Binh and her team have extended the program.
Often people come to the hospital, seeking answers to issues related to memory loss. Many elders live at home with extended families, and their children and grandchildren are frequently confounded by their cognitive impairments and other symptoms of dementia. Dr. Binh and her associates offer education, information, and comfort. They describe the disease and try to help families move beyond their initial feelings of hopelessness. They encourage families to accept and embrace their elder and support him or her in living a meaningful life.
We left our meeting with these remarkable women feeling inspired. They are doing important work and making a difference for the people of Hanoi and Vietnam.
As Director of Operations for a national call center, Paulan Gordon’s work required an intense travel schedule, detailed project management skills, and a rigorous adherence to industry standards. So when she started feeling confused, she attributed the struggles to stress. Some days, she felt so overwhelmed that she locked herself in her office and called her husband to come pick her up early.
She was asked to step down from her position. Initially, the loss of her career was both financially and emotionally staggering. Suddenly, she had no purpose, no income, and no peer group. She had to reinvent her life.
In 2012, at the age of 57, Paulan was diagnosed with vascular dementia. After a period of uncertainty, Paulan began using her interpersonal, communication, and management skills and volunteering as a mentor and a dementia advocate.
“I’ve learned there’s a lot more to life than success in business,” she says.
When she was working, Paulan was so busy she didn’t have time to build friendships. Now, through her mentoring, she has developed deep connections with others who are living with dementia.
“The relationships you create within the walls of dementia are so intimate,” Paulan says. “People talk very openly about their personal problems and challenges. I feel enriched, being part of these conversations and having such close friends.”
Her work as a dementia mentor has also given Paulan a sense of purpose.
“I work with four people and all of them appreciate my phone calls and my caring. That appreciation boosts my spirits,” she says.
Through her mentoring and advocacy work, she’s met doctors, lawyers, teachers, entrepreneurs, and others who have applied their intelligence and skills to living successfully with dementia.
Speaking out for Adaptation
When Paulan gave business speeches, her hands grew clammy and her mouth dry. She battled nervousness and worried about getting facts wrong and making errors.
“Now, I don’t get very nervous,” she says. “I’m speaking from my heart about things close to me, so I can’t make a mistake. Plus, I’m motivated: I want to help others and I want people to understand the truth about dementia.”
Letting Go of Difficulty
“You’ve asked me that question five times already,” Paulan’s husband says.
“Then it must be really important,” she answers.
Paulan is happy she can laugh at trying situations. She has let go of things she can no longer do. She stopped driving because spatial relationships were difficult for her. Paulan knows she’s forgetful and sometimes repeats herself. Her husband and family take that repetition in their stride. She’s also trained her family not to interrupt her when she’s talking, because she can easily lose track of what she was saying.
“My husband doesn’t call attention to my deficits and I forget I have them,” she says.
Proactively, he reminds her about meetings and appointments. She uses a big planner and makes detailed notes, including instructions on how to sign onto the internet, and notes on various conversations.
Changing Reading and Money
Paulan is constantly using her creativity to solve problems. She was an avid reader, but her memory retention has diminished and understanding complicated novels with dozens of characters became a challenge.
“If I put down a book, I can’t remember what happened at the beginning,” she says. “Although there is an upside to the situation: I could save money reading the same books over and over again.”
She temporarily put down her tomes and started reading short stories and magazines. This allowed her to continue her beloved hobby without so much frustration.
She also worked around her reduced mathematical abilities. When she shops, she hands the cashier an extra dollar, so she doesn’t get overwhelmed by counting out coins.
“I hope people are honest when they give me change,” she says.
Stirring up her Spirits
“I don’t worry about dying” she says. “I basically feel positive.”
Many people have a distorted view of dementia. With her speaking and writing, Paulan helps people understand the truths of the disease.
“I like sharing ways to support friends and loved ones who are living with dementia,” she says. “This information helps prevent decline and dramatically increases the well being of both care partners and people living with dementia.”
Meanwhile, Paulan’s advocacy and mentoring work has filled her life with depth, friendships, creativity, and purpose.
We roll into the memory care facility’s dining room just as the show is ready to start. The singer, Thelda, kicks off her shoes and presses play on the boom box. Above the cheerful sound track, she sings Jingle Bells. She dances across the room with the remnants of ballroom steps. She stops in front of Mom and sings right to her. She gets on her knees, so she can look into Mom’s eyes, and keeps singing. Mom notices her and smiles a little.
Thelda moves on, singing to each of the patients gathered around, so intent on making a connection that she often forgets the words.
“Is it all right for your Mom to come to Christmas holiday events?” the activity director had asked me, when Mom moved in.
“Yes, I’d like her to go to any activities. She likes the extra energy.”
I think Mom would approve of my decision, even though she has never celebrated Christmas. Growing up, her immigrant mother held on to the Jewish spirit of her home, kneading dough for Friday evening challah, observing each holiday and prayer period in her own way. Some orthodox women followed the religious law that commanded a small piece of the dough be burned as an offering to God. My grandmother was poor; she did not believe in burning good food, regardless of tradition. So she sacrificed a portion of the dough to her youngest daughter, my mother Fran. She created a “bread tail,” leftover dough that she baked, then smeared with butter and sprinkled with sugar . When Mom used to talk about her mother, she always mentioned this special treat.
Even when I was growing up, and we were the only Jewish family in our neighborhood, my mother still did not sing Christmas song. She let the holiday rush by her, like a large train, whooshing past and leaving her behind.
Now, I am singing Christmas carols to my Mom for the first time and she is smiling. She has moved beyond the place where the religions are different, beyond the place where she wants to separate the dough and make a sacrifice for tradition. Her new tradition is anyone who can make her smile.
With each song, from White Christmas, to Silver Bells, to Frosty the Snowman, Thelda moves back to Mom, tapping her, acting sillier and sillier. Each time, Mom lifts her head and widens her mouth for a second.
For her finale, Thelda puts on a big red nose and sings Rudolph. When she dances in front of Mom with that scarlet nose, Mom laughs, her face a miracle in pure enjoyment. I laugh too, so delighted to see Mom engaged and absorbed.
Two weeks from now, I will bring a menorah and candles into my mother’s room. My father and I will have a short Chanukah ceremony with Mom. She will pick at the shiny paper covering the Chanukah gelt (chocolate candy disguised as money). She will slump over in her chair. But she will come back to life when she sees me, her only daughter, wearing a big red nose as I light the menorah.Here’s to a meaningful and fun holiday season.
I look forward to connecting with you when I resume blogging in early January.
I named my brother Dan, our head chef, first. Then I included the support team—myself, my mom, my daughters and nephews.
“Did I help?” Mom whispered as I passed her the mashed potatoes.
“You sure did,” I told her. ”You mashed the potatoes, put the marshmallows on the sweet potato casserole, and mixed the fruit salad.”
“That’s good,” she said. “I like to help.”
Our desire to help and contribute to seasonal celebrations doesn’t end with a diagnosis of dementia. It’s lovely to linger in the kitchen together, preparing food for the holidays. It’s even lovelier when you can adapt and enjoy dementia inclusive holiday cooking so that people of varying abilities can participate.
Rebecca Katz, author of The Healthy Mind Cookbook, sees food as a great equalizer, something anyone can enjoy regardless of abilities. Fixing a delicacy for someone offers a tangible and delicious way to give back.
Here are six secrets of iementia Inclusive holiday cooking.
- Leaf through a favorite family cookbook or recipe box and use the pictures and recipes as a catalyst for conversation. Ask open-ended questions, such as, ”What does that brownie recipe make you think of?” “What do you like about the holiday season?”
- Chose a time of day when you’re both rested.
- Create a comfortable kitchen environment, by playing familiar seasonal songs you can both hum or sing along to. Reduce extraneous noise and distractions, such as a television in the background.
- If you wish, take photos during the experience. That way, you can relive the adventure and share with family and friends.
- Indulge in instant gratification, if possible, by sampling your work when the cooking is complete.
- Even if the person living with dementia can’t help prepare food, he can still enjoy sitting in on the action and the conversation.
Whether you’re stirring a pot of orzo or dropping mint leaves into cool water, enjoy your time of creation and connection in the kitchen.
A longer version of this piece originally appeared on Joan Lunden’s excellent website: Enjoy Dementia Inclusive Holiday Cooking. Thanks to Sue Fitzsimmons, MS, ARNP, Judith Fertig, author of The Memory of Lemon, Kate Pierce, LMSW, Alzheimer’s Association Greater Michigan Chapter, and Rebecca Katz, author of The Healthy Mind Cookbook
Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
Some years ago, when my mom was diagnosed with dementia, I didn’t know anyone else who was going through this journey. I felt very alone, even though I had a beautiful network of friends. I turned to writing to help me make sense of the situation. Eventually, I gathered the courage to share my personal essays with others, often through simply reading my stories aloud to friends and family. Being able to share my thoughts and feelings on this deeply meaningful dementia experience was so therapeutic, and it inspired me to reach out to other caregivers. Through my years as a family caregiver and through interviewing dozens of caregivers and experts in the field of dementia, I gleaned these 7 tips for reducing caregiver isolation.
When my friend Karen asked me to tell her more about my mom’s life, I was thrilled. I had been so immersed in my caregiving responsibilities, I had forgotten Mom’s fascinating adventures as a nurse in WWII, her worldwide travels, and more. Simply asking questions about the person who is living with dementia and listening avidly to the stories is a gift to the caregiver.
“Your mother is so interesting,” my friend Jane said. Jane had offered to simply come to my house and have a short visit with me and Mom. My mother was going through a period of repetition and I had heard her tale of the natural hot springs in Iceland at least 113 times. But watching Jane lean forward, ask cogent questions, and smile at Mom allowed me to appreciate Mom’s stories in a new way. These were cornerstones in my mother’s life and Jane’s interest reminded me what treasures they were.
Mom had been a vibrant movie-goer, an avid opera lover, and an ardent museum enthusiast. But when she could no longer go out, I loved it when people offered to bring arts, culture, and the occasional dog, to us. Studies show that even indirect contact with animals reduces stress. Visits from small dogs and cuddly babies boosted both our spirits and helped us feel connected with our community.
Bringing over an art book and gazing at favorite painters together invited out the creative spirit and were a catalyst for open-ended conversation. Singing and playing music with others stirred up positive memories and filled us with happiness and well-being.
So often, caregivers forget the power of fresh air and exercise. They forget the joy of sunshine and trees. When they don’t have the steam to set out on their own, offering to take them on a stroll, a run, to a yoga class, or just to sit on a bench in a park, can offer moments of connection and renewal.
“What can I do for you?” my life-partner often asked. Frequently, I was so overwhelmed I had no answer. So he asked me concrete questions. “Do you need any errands run?” “Would you like me to make dinner?” “Are there phone calls I can help you make? Grocery shopping I can do?” Offering to do simple tasks helped me understand I did not have to soldier through this alone. Help was all around me and one of my spiritual journeys was learning how to receive it.
It’s not always easy to stay connected with friends who are living with dementia and their caregivers, but it is so worth it. Even when my mother felt lost at social gatherings, she still enjoyed the energy of being around empathetic friends. Even when she didn’t understand every speck of conversation, she relished being around others and meeting new people. So did my father and so did I. Having friends reach out with invitations reminded us we were still part of our community.
Sometimes we don’t know what to say to our friends who are caregivers for those living with dementia. We don’t know what to do. Then it’s time to simply state the truth and tell them, “I want to be there for you, to understand what you’re going through. I want to support you, and I don’t quite know how to do it. Can you guide me?”
Chances are the answer will be a warm hug and a resounding, “Yes.”
As the daughter of someone who lived with dementia, I do a lot of things to boost my brain health. I try to walk 10,000 steps a day, along with other exercise. I eat blueberries and broccoli. I do squats, try to memorize a few words of Spanish, and think about taking harmonica lessons. I try new things, laugh often, and practice drawing. But a recent study revealed that I was intuitively doing something else that was cheering on my brain, something I hadn’t even counted. Just in time for Halloween, it turns out Chocolate Boosts Brain Health!
I recently encountered a fascinating study on the Harvard Health website, and was intrigued when I read this headline: Cocoa: a sweet treat for the brain
Imagine being in Italy and contributing to scientific research by drinking a luscious dark cocoa drink every day for eight weeks. Then imagine feeling even more lucid, vibrant, and healthy after that experience. That is the essence of the Cocoa, Cognition, and Aging (CoCoA) Study, published in the American Journal of Clinical Nutrition in December 2014, with this flavorful title: Cocoa flavanol consumption improves cognitive function, blood pressure control, and metabolic profile in elderly subjects. (Note: It turns out some of the “elderly” subjects are as young as 61, an age some of us may argue is merely “middle-age.”)
A Chocolate Boost Makes Your Brain Boast
I am also in love with this Maine-Syracuse Longitudinal Study (MSLS), of 968 people that includes these mouth-watering assertions:
All cognitive scores were significantly higher in those who consumed chocolate at least once per week, than in those who never/rarely consumed chocolate.
“More frequent chocolate consumption was significantly associated with better performance on the Global Composite score, Visual-Spatial Memory and Organization, Working Memory, Scanning and Tracking, Abstract Reasoning, and the Mini-Mental State Examination,” said the research team, which included scientists from the University of Maine.
More Delicious Cocoa-flavored News
And another study from Loma Linda University, states:
“Dark chocolate, which is 70 percent cacao, is a major source of flavonoids –- powerful antioxidant and anti-inflammatory components that are known to be beneficial to cardiovascular health. The California team’s initial studies at Loma Linda University have shown that absorbed cacao flavonoids penetrate and accumulate in regions of the brain associated with learning and memory.”
“We are tremendously excited about what these findings could potentially mean for brain health,” said Lee Berk, DrPH, MPH, who led the team. “This may open the door for potential restorative uses for individuals with memory/recall or dementia and aging-related issues.”
Never Forget To Boost Your Brain
I now have a remedy for those days when I’m too tired to exercise, too busy for a crossword, too cranky for a brain game. Or for when I simply forget. On those days, I’ll simply treat myself to a taste of the dark side. And hope it leads me towards the light.
Want to learn more?
This year, Laurie Scherrer is taking a number of trips: Atlanta, to speak at a conference, South Carolina, for a family reunion, and the Caribbean, as a speaker and participant in a dementia-friendly cruise. Since she is living with early onset dementia, Laurie plans out her trips, taking into consideration her needs and the chaos that can be a natural part of any journey. Here are some insider dementia friendly travel tips from Laurie.
Planning for a Smooth Flight
Laurie contacts TSA and her airline, notifying them of her disability, so they can mark it on her ticket. She and her husband both paid for a TSA pass, so they can go in together. That helps her avoid the bombarding noise, distraction, and exhausting wait inherent in a long check-in line
“The TSA staff will walk you through the line,” she says.
Laurie is sensitive to noises, so the constant airport announcements, the din of hundreds of conversations, and the drone of background sounds present challenges.
“I walk into a restaurant and I hear the clanging of the dishes, the forks on the plates, the waiter’s shoes thudding against the floor,” she says. “I have lost my ability to filter sound, and those noises are as strong as any conversation I’m having.”
To minimize distraction and confusion and to help her concentrate, Laurie often wears noise-cancelling headsets.
Once in the airport, she tries to find a quiet place to sit.
“I don’t sit at the gate for two hours with a slew of people,” she says. “Sometimes a restaurant or bar is quiet. For overseas trips, you can try to get access to an airport lounge.”
She tries to get a seat towards the front of the plane, to avoid additional waiting and wading through a crush of passengers.
Packing it Up
Two weeks before a trip, Laurie organizes her clothes for each day. She puts on an outfit, then takes a picture of it.
“On the picture I write, ‘Purple shirt, black slacks, white sneakers, white socks, etc.,’” she says. “Then when I pack, I put each day’s entire outfit together, including socks and underwear. That makes getting dressed so much easier.”
At any new hotel, Laurie and her husband walk around the entire building so Laurie can get oriented. When she is traveling alone, she talks to the hotel manager, to explain her situation. At one lodge, the receptionist escorted Laurie to her room and helped her unpack. Laurie carries a tag with her name and room number on it, in case of sudden confusion.
“Don’t be afraid to ask for help,” she says.
Laurie has already planned her quiet time and her personal getaways for the upcoming cruise, where she is both a traveler and a speaker/educator.
“On cruise ships, the library is often a quiet haven,” she says.
She also avoids group shore excursions, as it is hard for her to enjoy being in a crowd.
But it’s not hard for Laurie to relish travel and to revel in engaging in new experiences and meeting new people. It just takes a little planning and a lot of taking care of herself. #
To learn more about Laurie, visit https://dementiadaze.com/about-me/
“I feel like I’ve been on extended vacation,” Ron’s father Frank said, after his first day in a memory care facility. “Today was really enjoyable.” Ron and I just melted with happiness. We had visited many facilities, with the hope of finding meaningful memory care with great activities. Frank couldn’t have said anything nicer.
It’s quite an emotional journey, finding meaningful memory care. So many of you have asked me for tips. I am re-posting the great ideas from my friend, Dr. El, Dr. Eleanor Feldman Barbera, PhD, author of The Savvy Resident’s Guide and a columnist for McKnight’s Long Term Care News.
Finding Meaningful Memory Care With Engaging Activities
“Remember, everything is an activity,” says Dr. El. She encourages care partners to seek a community with a dedicated memory care program, so people with cognitive impairments can benefit from all the offered activities.
“In a specialized unit, staff are trained to work with people who are living with dementia,” Dr. El says. “This training can help people enjoy greater independence.”
In one facility, a lady liked to wander into people’s rooms and take their jewelry. Rather than getting upset, the staff understood, framed this as “shopping,” and simply returned the jewelry.
“These kinds of insights create a calmer, slower-paced environment that reduces agitation,” says Dr. El.
Seek Structure, Soothing and Variety
Here are some things to look for, as you visit facilities:
Is there a home-like atmosphere?
Is there a structure to the day?
Are there calming activities scheduled for change of shift? Changing shift is disruptive, so some communities orchestrate a teatime with music or other soothing activities.
You’re also making sure there are a variety of activities throughout the day. These should include:
Outdoor Time: Taking people outside makes a big difference in mood, appetite, and the sense of connection to the world.
Movement: Exercise is an important component to health.
Nurturing: Look for activities that make people feel confident and good about themselves, such as spa days or activities that incorporate skills such as cooking, art, or gardening, modified to provide a “success” experience.
Engagement: Being engaged, rather than just entertained, inspires a sense of purpose, creativity, and social connection.
Kindness is Everything
“Meet with the recreational therapist,” Dr. El suggests. “Is she compassionate and caring? Are the staff members kind? You can have all the activities in the world but if they’re not done with gentleness and humanity, they won’t work.”
Let the recreation director know what your loved one likes to do and see if she can adapt the activity.
Visit as often as you can and attend activities together. Encourage friends and relatives to join you. Meet other residents and get to know the families and staff.
“You can act as a connector to create friendships, so residents engage in their own interaction, even when you aren’t there,” Dr. El says.
For more information, visit Dr. Eleanor Feldman Barbera, PhD, http://www.eldercarewithdrel.com,
Treat yourself to Dr. El’s book, The Savvy Resident’s Guide
Ron and I both love helping people create better connections in the land of dementia. We are enjoying the second year of our meaningful Movies and Memories film series. Our next free movie events (and I say “events’ because there is so much more than just sitting and watching a film) are September 10 and November 5. Please tune into Kansas City Live on KSHB-TV on Thursday, September 7 during the 10:00 hour, for additional details.
I was delighted to be featured on Mike Good’s Together in This recent podcast. Mike is a gifted interviewer, with an authentic voice and a true commitment to help people stay better connected. I so enjoyed our time together and wanted to share the interview with you.
Recently, we have been connecting through creating laughing classes for caregivers, elders, people who are living with dementia, and others. We love going around to care communities and laughing with community members, family, and staff. Our next public laughter presentation is at the Landon Center, on October 18 at noon. It’s free and open to the public. If you’re in the Kansas City area, please come laugh with us. It’s great fun!
I was honored to have a book excerpt featured on Maria Shriver’s website. Maria does amazing work and her new book, Color Your Mind, is a visual and information treat, full of inspiring ideas.
I was thrilled when a story of mine was accepted by Chicken Soup’s The Dog Really Did That? The story honors Ron’s mom, Mollie, and her love for a dog named Biscuit. If you have a chance, read my story and so many other great essays in this inspiring book.
Finally, thanks to Mary Anne Clagett of Creative Forecasting, a publication for Activities Professionals. She is featuring a review of Connecting in the Land in their November issue. The publication brims with interesting ideas for creative and meaningful activities.
There are so many ways to Create Better Connections in the Land of Dementia, and as you can see, there is power in sharing stories, laughter, and the arts.
“Let’s go to the movies,” my dad often said to my mom. My parents would have loved our Movies and Memories series, now starting its second year. We are excited to announce our partnership with the Kansas City Boys Choir and the Kansas City Girls Choir this season. Some of their outstanding performers will be joining us at each event.
Already, the series is making a difference in a variety of ways. Additional libraries in Missouri and other states are interested in implementing the program. And our library is so committed to becoming more dementia-friendly that it is having special training for its staff, courtesy of the Alzheimer’s Association — Heart of America Chapter. Please share this invitation with those who would enjoy it. And if you’re in the Kansas City area, please join us. It’s free and open to all. Let’s go to this movie series!