Creating a Memorable Dementia-Friendly Movie Experience

For months, our Kansas City Movies and Memory team has been working on creating a memorable dementia-friendly movie experience and film series. Ron and I were so lucky to partner with the Heart of America Chapter of the Alzheimer’s Association, the Kansas City Public Library, and the Kansas City FilmFest. For our first offering, we wanted a short movie with a splash of fun and a heart-filled message that would engage multi-generations.  We wanted live music and free popcorn. We wanted each person to walk away with a souvenir. And we wanted to attract a diverse audience.

The Red Balloon was a wonderful success.  This ageless film, about a boy and his magical balloon, attracted one hundred people, from ages three up through the nineties. Our audience, little kids and big kids both, clustered around the popcorn machine, watching the aromatic kernels blossom. They listened to Parisian songs by a renowned clarinetist and a guitarist.  They learned a little about creating a “memory aware” city. And they laughed, smiled, sat on the edge of their seats, and clapped, all avidly involved in the movie. At the end, we walked out holding a huge bouquet of red balloons and each person was excited to take home a lovely reminder of the afternoon.

Here’s what we learned: when you’re taking photos of people holding balloons, you don’t even have to ask them to say, “Cheese.”  They’re already smiling.

Here’s the great news.

You can easily have this movie experience at home. It’s perfect for an intergenerational family gathering, a holiday event, or just a cozy evening at home.

Here are a few tips for creating a memorable movie experience:

• Pick a time of day where everyone has good energy. Our event was held at 2:00 in the afternoon.
• Make sure the technology is organized and everyone can see the screen.
• Arrange for comfortable seating and minimal distractions.
• Offer your favorite movie-going indulgences. Freshly popped popcorn is irresistible.
• Talk about what you’re going to see.
• If you want, stop the movie in the middle and talk about what you’ve seen. Ask open-ended questions, such as “Would you have climbed the pole to fetch the balloon?” “Why do you think the boy loved the balloon so much?” “What does this movie make you think of?”
• At the end, talk about the movie: what you liked, what you didn’t like, and what the movie made you think about.
• When the movie experience is complete, hand each person a helium-filled red balloon. Even a red balloon filled with hot air will do!

The Red Balloon is just one idea. Please tell us about movies or TV shows you have enjoyed watching and share your film-watching tips.

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.

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One Potato, Two Potato

The next three blogs are dedicated to the holiday season.  This story just appeared in Chicken Soup’s new Merry Christmas book.  Here’s to each of us sharing our light in the world.

The Latke Legacy

“This is not like Mom used to make,” I had to confess. It was my first Chanukah of being the latke lady. My mother’s potato pancakes were crisp, flat, and nicely rounded. The texture was smooth but not mushy and they shone with just a glint of leftover oil. I had been a latke apprentice for years, pressed into service by Mom. I was a key cog in the labor pool, peeling the potatoes, then wearing out my arm rubbing them against the stainless steel grater, using the side with the teardrop shaped holes. My mother must have known that enlisting my help would keep me from pestering her to make potato pancakes for other occasions. Only once a year did these delicious patties grace our table, when we lit the first candles of Chanukah and began the eight-day Festival of Lights. 

My debut latkes were pale and greasy, like something carelessly served in a late night diner. I myself was pale and greasy from the stress of trying to coax the patties into cohesion. First they had drifted apart—too little flour. Then they had turned cliquish, glomming into militant lumps. When I had finally worked through the potato/flour/egg ratio, I bumped into the complex dynamic between potatoes, oil and heat. For three hours I had struggled to create this barely edible token of tradition.

Years passed. Every Chanukah, I faced a different challenge. The oil was too cold, too hot, not enough, too much. The texture was too coarse or too fine. The grated onions were too strong or too weak. The latke mixture was too thin then too thick. Every year, I hoped for pancakes that tasted like Mom’s and got instead grey leaden latkes. My daughters, who peeled and grated potatoes with me, examined my finished product warily, smothering it in the traditional applesauce and often taking only a few bites. I worried that when they grew up, they would forego the holiday tradition and turn to something simpler and more delicious, like frozen hash browns. I felt a sense of failure as a mother and as a tender of the tradition. My mother had shown me how to make the latkes: why couldn’t I measure up and instill the potato pancake protocol in my progeny?

Then my daughter Sarah, fresh from college and a first job, moved back to town and offered to help me prepare the holiday meal. She was a food channel devotee and had already orchestrated several dinner parties, creating the menus and cooking all the courses. She understood the relationship between vegetables, oil and heat.

“Mom, I think you need to squeeze more water out of the potato mixture,” she advised. “Maybe you could use a food processor to grate the potatoes. What if you used two pans instead of trying to cram so many into one?”

I stepped back and she stepped forward and under her guidance, we prepared the latkes. As I watched my daughter mastermind the cooking, I realized that tradition could be kept alive in many ways. My daughter was starting the tradition of “doing what you’re good at,” giving me a chance to forget my own culinary challenges and applaud her self-taught abilities.

That Chanukah night, everyone at the table oohed and ahhed at the sight of the latkes. Each one was golden brown and crisp, free of extra oil. I didn’t even have to secretly search and pluck out a “good one,” like I had been forced to do in previous years.

I looked around the table of friends and family and took a bite of my daughter’s latke. My mouth filled with the crunch, flavor and intriguing texture of a of well-fried potato pancake. This was the latke I had been waiting for; just like Mom used to make. Only better. 

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

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Helping Children Stay Connected with Their Loved Ones Who Have Dementia

How do children internalize the dementia of a beloved family member and what can we do to help them connect and understand the process?

Max Wallack, a gifted young writer, offers wonderful insights in his new book, “Why Did Grandma Put Her Underwear in the Refrigerator?” Max is a philanthropist, Alzheimer’s advocate, and college student in neuroscience and psychiatry. His great-grandmother had Alzheimer’s and Max helped care for her when he was growing up.

I was so impressed by the book that I asked Max to share more of his insights.

Here is a Q & A featuring some pieces of “Wallack wisdom.”

Q. Why is it important to talk to children about Alzheimer’s when a relative or close friend is going through the disease?

A. You want to allay the child’s fears so they can continue to have a loving relationship with their relative or friend.

Q. What was most confusing to you as a child?

A. I had a hard time understanding why Great Grams might be confused and behave very badly at home and then appear normal when we went out.  A doctor told me that sometimes the nerve impulse in the brain jumps the synapse and sometimes it doesn’t.  I tried to visualize this in the book with my illustration of the ball player who sometimes makes the catch and sometimes doesn’t.  The diseased brain cell cannot always “make the catch.”

Q. As a child, what were the gifts you brought to your family and to your great-grandmother?

A. Her whole life, my great grandmother loved being with children.  Being with me gave her great pleasure, even up to the last few days of her life.

Q. In general, how can children add to the caregiving process?

A. Just being there can make a difference.  Sometimes adult caregivers need a few minutes for themselves.  Perhaps they need to cook a meal or take a shower.  Even a young child could alert a caregiver if the person who has Alzheimer’s wanders outside or gets into some obvious trouble.

Q. How does being part of a caregiving family benefit children?

A. I developed a very early sense of responsibility and empathy. I know of other young caregivers who have a sense of caring and responsibility beyond their years.  Their parents don’t thrust this responsibility upon them; rather, it is developed as they learn empathy. Children have a natural tendency to want to help.  Parents should allow them to participate in the caregiving and not shield them from what is happening.

Q. What kinds of support do children need?

A. Very young children are often confused about the disease and worry it might be contagious.  They need a simple explanation of what is happening.  I believe Alzheimer’s disease should be taught in our schools.  This could lead to mini support groups for children, perhaps facilitated by a guidance counselor.  I hope schools might use “Why Did Grandma Put Her Underwear in the Refrigerator.”

Q. Anything else you’d like to include?

A. People with Alzheimer’s disease are still the same people you have always known. They are “more there” than meets the eye.  The trick is to find a means of communicating with them.  The creative arts represent a great means of connection, since the area of the brain involved in creativity is one of the last areas affected by the disease.

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Max Wallack’s journey with his grandmother helped him identify his calling. He is a student at Boston University and a Research Intern in the Molecular Psychiatry and Aging Laboratory in the Department of Pharmacology and Experimental Therapeutics at Boston University School of Medicine. He is also the founder of  PUZZLES TO REMEMBER. a project that provides puzzles to nursing homes and veterans’ institutions that care for Alzheimer’s and dementia patients.

Connecting in Long-Term Care: Seven Sure Ways to Have a Great Visit

It wasn’t just an ordinary visit. I walked into the long-term care facility and made my way to the memory care unit. I paused in front of the locked door, pulled a crumpled scrap of paper out of my pocket and tapped the entry code into the keypad. As I walked to my mother’s room, her new home, I felt sad, confused and guilty. How was I going to connect with my mom in this strange new environment?

Eleanor Feldman Barbera, PhD, author of The Savvy Resident’s Guide, has 16 years of experience as a psychologist in long-term care and understands the emotions and confusions  family or friends might feel when visiting in a long-term care facility. Here are her tips for having a meaningful connection.

Seven Tips for Visiting a Loved One in a Long-Term Care Facility   

Many families find it stressful to visit their loved ones in long-term care, especially if dementia has changed their usual ways of relating. Here are seven ways to make the most of your visits:

1. Help the room feel like home by bringing photos and bedspreads, creating an environment that feels more comfortable and familiar to your relative and more pleasant for you to visit.  Labeling the photos with names (such as “Oldest son, Sam”) provides reminders in your absence and clues for the staff that are with your loved one daily.

2. Turn off the television or radio and close the door during your time together. When the room is quiet and free of distractions, it’s easier for someone with dementia (and for those with hearing loss) to focus on their visitors.

3. Try to converse at the same height, sitting on beds or chairs rather than standing while your loved one is sitting. Bring in small folding chairs and stash them in a corner if you tend to have lots of visitors.  Remember, though, that some people react better to hosting just a couple of guests at a time rather than a possibly loud and confusing crowd.

4. Use memory aides such as photos and magazines of beloved hobbies as conversation starters.  Creating a memory book together can be a great way to spend some time, especially if the focus is on enjoying the process and the conversation that comes from it rather than on completing the memory book in a set amount of time.

5. Go with the flow of the conversation, allowing your loved one to talk about what’s on their mind, rather than asking questions they used to be able to answer but no longer can, which is upsetting for everyone.  For instance, replace, “Don’t you remember X?” with “Your flower garden was so lovely,” adding details that reflect your appreciation for their abilities and see what response this generates.

6. Find pleasurable activities that don’t involve talking, if that’s beyond your loved ones’ capabilities at this point.  Listen to music, hold a private stretching class, go outside and enjoy the sun and the birds.  Just be, pleasantly, without expectations.

7. Talk to staff members and to other visiting families and become part of the long-term care community.  Media reports to the contrary, most long-term care homes are filled with people who are trying to do the best they can for your loved one under challenging circumstances.  They can become your allies, supporters, and teammates in care.

Eleanor Feldman Barbera, PhD is an accomplished speaker and elder-care coach with over 16 years of experience as a psychologist in long-term care. Read her book, The Savvy Resident’s Guide, for the inside scoop on how nursing homes work and visit her award-winning website, MyBetterNursingHome.com, for more tips on how to thrive in long-term care.