Posts Tagged ‘Alzheimer’s Association’

Making a Difference, One Island at a Time

“We are here to explore meaningful ways to stay connected throughout the dementia journey. We are all going to take what we’ve learned and we need the commitment of all of you to help us reach out to the families living with dementia in our communities,” Raymond Jessurun said when he introduced us at a gathering of healthcare professionals, family caregivers, and government representatives. Raymond, who is Secretary of the St. Maarten Alzheimer’s Foundation, is a passionate and inspiring speaker. He urged everyone to join as volunteers of the Alzheimer’s Foundation to spread the meaningful engagement throughout the island, making a difference, one island at a time.

As a group we discussed many engaging activities, including the joy of singing, the nurturing that animals can offer, the power of looking at art, and the creative conversations that cooking together can inspire. We strategized adding more laughter into the day and the importance of knowing each person’s musical preferences. We were also learned of the challenges family caregivers face, which in residential settings as in the Sint Martin’s Home are being addressed by professional caregivers.

Our host, Bregje Boetekees, Director of the White and Yellow Cross Care Foundation in St. Maarten, was deeply tuned into the importance of offering an array of individualized activities and to the comfort that nature brings to those who are living with dementia. She is overseeing the construction of a new elderly care facility with a large courtyard that will offer safe and ready outdoor access, as well as fertile ground for gardening and other nature-based activities.

As always, we left feeling inspired by each of the people we met.  Bregje and her team are constantly exploring ways to enrich the lives of their residents who are living with dementia. Raymond and the board members of the Foundation are an example of how a few compassionate and determined people can make a difference. Just eight years ago, Raymond was struggling to find his mother-in-law the dementia care she needed. His advocacy attracted other caregivers and this year their Foundation, which is recognized by Alzheimer’s Disease International, celebrates its seventh year of serving the community. In June, Raymond is co-coordinating a gathering of leaders of Alzheimer’s organizations of 15 Caribbean countries as a step to forming Alzheimer’s Caribbean. These advocates are making a difference, one caregiver at a time, one facility at a time, one island at a time.

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We invited everyone to join us in Dr. Madan Kataria’s Ha Ha chorus. Watch this and please, sing and laugh along. Click here to view the St. Maarten HaHa Chorus

For more about Laughter Yoga, visit Madan Kataria’s website, http://laughteryoga.org

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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Using Creativity to Live Successfully with Dementia

“Creativity is evident in every one of us,” says Michelle Niedens, Director of Education, Programs and Public Policy, Alzheimer’s Association Heart of America Chapter. Every time I hear Michelle talk about the creative aspects of living with dementia, I am moved. I was so honored to have Michelle speak at my book launch for Connecting in the Land of Dementia. I treasured what she said about using creativity to live successfully with dementia and I asked if she would allow me to share her words of wisdom and caring with you. Here is her beautiful talk.

Using Creativity to Live Successfully with Dementia

by Michelle Niedens

It has been said that “we are helped by what is not, to use what is”.    In Alzheimer’s disease, there are some things that are not.   But welcoming this philosophy of using what is allows us to explore all the parts that are.   As part of projects focusing on creativity at the Alzheimer’s Association, I have heard many people talk about how they are not creative.   In one way or another, they find a way to let me know they believe they cannot create art, or stories or a collage or whatever forms of creation lay before them.    Yet if we allow our minds to really think about the place of creativity in our lives, we could make a case that it is evident in every one of us.   Whether it be building book shelves, writing poetry, the way we frame our words in conversation, the way we problem solve, the way we play with children, the way we garden and even the way we convince ourselves of things.  Life is both complicated and simple and requires creativity to survive.   It is almost as ever present as thought and breath.

In the poem, “the Necessary Art of Salvaging”, Barbara Lau writes;

In the dumbfounded middle of loss
We still manage to
Open mail
Feed the dog
Answer the phone.
The letter came the same day
My doctor announced
That the minnow heart inside me
Had stopped pulsing.
Back home I ate the lunch placed in front of me
And when the envelope fell through the slot
I opened it.  The handwriting said
That a poem I wrote months ago
Would be released on a polished
White sheet of daylight.
I will never think of it as a fair exchange
But at least I know how to salvage,
How to search through the rubble
For that one unbroken teacup.
In the earlier stages of Alzheimer’s disease, creativity can serve to challenge the mind in new ways, what some might call brain exercise.   It can allow the expression of the mixture of feelings in more comfortable ways or when there are no clear words to do so.    Creativity can connect people and move our center from the relinquishing to the replacing.
In middle stages, there is something lost in Alzheimer’s disease that many of us only wish we could shut off.  Somewhere in our frontal lobe, there is a part that tells us what we cannot do.    It inhibits us.   The part that tells us we would not like a food even before we try it.   The part that tells us we wouldn’t be interested in a play or movie just because of some small variable.   The part defines what we are willing to do or try or even to direct some interest in.  For some people that inhibition is significant.  It can be deeply embedded by early life expectations, culture, messages or even trauma.  We can appreciate that there are times that inhibition is a good thing.  But one only has to be around a person in the middle stage where such inhibition has been diminished to see the good side of that loss as well.
I remember one woman who would come to a poetry group with me every month.   She lived in a long term care facility due to the significance of  Alzheimer’s disease.   She was an only child, parents long gone.  She never married and never had children.  I surmised from her history that perhaps she had always struggled with understanding and interrupting social cues and likely never had an insight into her emotions that allowed her to sort through the depression and anger that periodically flared.   These tendencies did not disappear in Alzheimer’s disease, but what appeared was a person more open to others, less concrete in her interpretations and increasingly able to find ways to connect – always through creativity.   On her last day attending the poetry group, she brought me a clay pin she had made.  It was the shape of a heart – kind of.  It was lop sided with dents where her fingers had tried to mold the clay, painted red with places missed, and wrapped in a kleenix.   I still can picture her face as she handed it to me.  It is one of the most treasured pieces of jewelry I possess.
Another poem, written by Lois Hjelmstad, perhaps better summarizes the significance of incorporating creativity in the experience of dementia.
Pipe Organ
I am not a large woman
And I am aging
I have been diminished by cancer, surgeries and chronic illness
But when I sit at the console
And my fingers touch the keys
My spirit soars.
Here – in the glorious sound –
My muted voice sings again
My faded beauty sparkles once more
My waning strength shakes the rafters.
What I am trying to say is this.  There are all kinds of important ways that focusing on creativity adds to the lives of those with a dementia.  Creativity brings laughter and fun, which we all need.  Creativity brings connections to others.  It provides a mechanism to share feelings and thoughts when other avenues may not be available or as clear.  It can be the way that unfinished business is sorted and that we grow into someone we wanted to be.   In other words, creativity can add meaning.
When I talk with individuals diagnosed with a dementia and their families, conversations include understanding what is lost and making decisions based on those that are anticipated.  But what is most important is finding a way to successfully live each day.   Finding those pieces that allow the muted voice to sing again.   And let the waning strength shake the rafters.  #
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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Creating a Memorable Dementia-Friendly Movie Experience

img_4432For 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.

img_4677The 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.img_4663
  • 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.img_4460CITLOD very smallLove in the Land of Dementia_cover

 

Ten More Steps to Make Your Community Dementia-Friendly

I’ve been thinking about Michelle’s ideas, inviting us all to be part of creating a more-dementia friendly community. Here are additional thoughts from Michelle Niedens, L.S.C.S.W. Director of Education, Programs and Public Policy, at the Alzheimer’s Association’s Heart of America Chapter.

What volunteers would walk with their neighbors who were living with Alzheimer’s disease, so they could exercise and visit with others, without worrying about getting lost?  dem 3

What if neighbors volunteered to visit regularly or run an errand?

What if law enforcement went beyond Silver Alerts and had standardized protocol for individuals who wander and go missing?

What if gas stations and convenience stores had training to recognize someone who might be lost?

What if pharmacies provided support information any time an Alzheimer’s drug was prescribed?

What if doctor’s offices had “memory aware” time slots, so people living with dementia wouldn’t have to wait in a noisy, chaotic environment?

What if there were geriatric urgent care settings?

What if grocery stores had a “slow down” line?

What if grocery stores had designated times when shopping support was available?

What would it take for all of us to be “memory aware” and to act on that?

dem 2……………………..

I want to do something to help here in Kansas City, but I haven’t yet decided what. In my upcoming book, Staying Connected in the Land of Dementia, I write about Meet Me at the Movies & Make Memories, a movie-going event for those living with dementia and their partners, co-created by John Zeisel. That really appeals to me and I’m thinking about contacting local theater owners. I welcome collaborators and I also would love to hear your ideas. What actions are you inspired to take?

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

Eight Paths towards a More Dementia-Friendly Community

On November 10, 2015, Michelle Niedens, L.S.C.S.W. Director of Education, Programs and Public Policy, at the Alzheimer’s Association’s Heart of America Chapter, gave a beautiful talk, inviting all of us to contribute to a compassionate, inclusive, and dementia-friendly community. Her ideas are both simple and profound and offer a challenge and an invitation for all of us. Over the next two weeks, I’m going to share some of Michelle’s visionary “what if” thinking.

From Michelle:

What would it take for all of us to be memory aware and to act on that?dem 4

What if restaurants had finger food menus? What if restaurants had specials from the finger food menu in the middle of the afternoon, when there were fewer people in the restaurant and things were quieter?

What if theatres had showings designed “memory aware”?

What if theatres had showings of old movies monthly with the “memory aware” icon on the website, so families could still enjoy getting out and having the cinema experience?

What if radio stations played songs related to memory issues in November (Alzheimer’s month) or April (Caregiver month)?

What if retail stores had designated days when the staff wore “memory aware” name badges and could provide more support to shoppers?

What if technology-based stores had annual displays of products that support memory, safety, or organization?

What if faith communities identified in bulletins/newsletters those activities that were “memory aware?”dementia friendly

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

 

Focusing on Art and Drawing on Memory

“What art offers is space – a certain breathing room for the spirit.” ~John Updike

 

“I want us to explore this work of art together,” Laura Voth says, as she passes out small copies of the Leon Kroll painting Lower New York, The Bridge in Winter, 1915.   IMG_2299

Ron and I have joined today’s session of the Focus on Art program at the Philbrook Museum of Art in Tulsa, Oklahoma. This collaboration between the Museum and the Alzheimer’s Association, Oklahoma Chapter, is part of the Association’s Drawing on Memory program and is designed for people living with dementia and their care partners.

“We’ve been hosting the program for three years and we keep learning from it,” says Jessimi Jones, Philbrook Director of Education. “We’re trying to connect people with art using their imagination and observational skills.”

“We’re also trying to engage people in conversation,” says LaShondia Horn, Early Stage Coordinator with the Association. “Looking at the art together and later creating art stimulates memories.”

Laura Voth, education assistant at the Philbrook, orchestrates the conversation and the drawing session that follows. To engage her audience, she looks for large paintings with recognizable images. Today’s oil features an old-fashioned Manhattan skyline as seen from underneath a bridge. Several boats navigate a choppy river.

Laura offers a little background on the painting, then says, “Take a look at the painting. What do you see?”

“Lots of big buildings,” Thomas says.

“What can you tell me about those buildings?” Laura asks.

“Tall,” Thomas replies.

“It looks like New York but I’ve never seen it from this angle,” Julie says.

I realize I also have never seen New York from that angle and I start noticing a few more of the picture’s details: two tugs boats, bouncing around in the rough waves, several men hoisting a rope from a dock.

“Has anyone else been to New York?” Laura asks.

“We marched through there and got right on a boat,” Thomas says. He’s got a good-natured slouch and a ready smile.

“What would it be like on that boat?” Laura asks.

“I can’t swim,” Julie says.

“I’ve been to New York as a visitor,” Mary says.

“What would you title this painting?” Laura asks.

“Under the Bridge,” Mary says.

The conversation continues as Laura asks sensory and observational questions about the picture? What time of year do you think it is? Does the painting make you feel small or tall? What do you think that round building is? What would you put in that round building?

Every one is participating, gazing at the river, the buildings, treating each question with curiosity.

After the conversations, we go downstairs to create our own art.

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In the art room, each person has a large sheet of drawing paper, which is easy to see against the dark green paper that covers the table. LaShonda and her team work with the museum staff making sure each person is comfortable and can reach the art supplies. As Laura guides us through drawing simple lines to create a bridge, the conversation continues. Click here for a one-minute tutorial from Laura on using paints and oil pastels.

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I’m sitting across from Emily, who says, “I can’t draw.”

I ask what color she likes and she says, “Purple.”

I show her the purple paint and ask if she’d like to try some.

She dips in her brush and strokes paint across the paper.

Color by color, she asks, “What now? What color shall I use? Where does this color go?”

During our painting session, I learn she was born in West Virginia, she doesn’t like to cook, she has five children and her brother is a wood carver. One of her treasured possessions is a carving of Dopey that her brother created when he was a teenager.

At the end, Emily has a wonderfully vibrant painting to take home and I have the wonderfully vibrant feeling of having connected with a fascinating woman.IMG_2334

 

For more information about the Philbrook, go to www.philbrook.org

The Alzheimer’s Association Website is www.alz.org/

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