Building London’s Bridge between Dementia and the Community

Imagine a global community of people diligently working to make the world a better place for people who are living with dementia. We met a few of the esteemed people who are making a difference on a recent trip to the United Kingdom and to France. Esther Watts has a passion for creating dementia friendly communities that is contagious. Talking to her gave us a lot of ideas and spurred us onward to collaborate on a dementia-friendly movie event in Kansas City. Plus, her workplace is located near the Thames and after our meeting, she took us to see the Queen’s Golden Barge, which was quietly waiting for its next chance to carry Her Majesty.

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London is already one of the world’s great cities and Esther Watts is helping to make it, and other cities throughout England, even better. As coordinator of the Alzheimer’s Society’s Dementia Action Alliance (DAA), she orchestrates policies, events, and activities tailored to people living with dementia.

Esther and a team of Dementia Action friends have contacted bus companies, arts organizations, retailers, sports authorities,and hospitals in behalf of those living with dementia.

“Our goal is to keep people going out in their communities, enjoying new experiences and meeting new people,” Esther says. “We want people to feel comfortable and welcomed.”

 

IMG_0335Royal Ways to Create Community Experiences

She and her team collaborate with some distinguished clients, including the Victoria and Albert Museum, Kew Gardens, the Royal Academy of Arts, historic Royal palaces, such as Hampton Court, and various sports organizations.

One of her projects was a dementia-friendly cricket match. Esther and her team scored free tickets for fans that are living with dementia and their families. They had plenty of trained Dementia Friends on-hand to welcome these fans and escort them into the stadium. There they showed a special short film on the history of cricket and shared items from the cricket museum. For those who needed respite from the excitement of the match, the stadium offered a designated “Quiet Room.”  When London celebrated Dementia Awareness Week, DAA wrote the Society of London theaters, asking for dementia-friendly playgoing experiences.

IMG_0383Advocates pledge to take three action-steps, which can be as simple as visiting a friend who is living with dementia or as complex as creating a self-guided museum tour for people living with dementia.

“Dementia Awareness Week gives a community a focus,” Esther says. “DAA is about what we can do together.”

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Please share your ideas for action-steps. One of mine is to try to stay in regular touch with friends who are living with dementia.

For more on the international scene, dive into my book, Connecting in the Land of Dementia: Creative Activities to Explore Together.  Pre-order your signed copy.

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Three Benefits of Artistic Alchemy

Last week, I wrote about Julian West and his work with music and dementia. Hannah Zeilig, PhD, is an expert in culture, language, and dementia, who participated in and documented Julian’s program. When I interviewed Hannah, I was inspired by her perspective on arts and communications and wanted to share a few of her key ideas.

images-1“The project showed us that you can converse in so many ways,” says Hannah. “The musicians and the dancer reminded us that we all can communicate without language.”

“One of the questions we’re asking in the UK is ‘How can the arts help with dementia? What can arts do that a game of dominoes cannot?’ ” Hannah says. “The arts help people become brave in how they connect with each other.”

The arts also transcend our dependence on achievement, identity, and memory.

“Being scared of dementia is the biggest barrier,” Hannah says. “In our language and our media, dementia is stigmatized and portrayed as catastrophic. One of the natural and common fears is summarized by this: ‘If I can’t remember where I live and my achievements, how do I know who I am?’

Julian’s work reminds us that we are all creative.

“People with dementia can be brimming with creativity and humor and able to make connections with each other,” Hannah says.

During one of Julian’s sessions, the musicians were playing and the dancer was cavorting around the circle. One resident, Alicia, walked right up, took the dancer’s hands and lead her in a waltz.

At the end of the dance, Alicia was glowing. She smiled and said, “We really just did something.”

And she was right.

….

imagesOther gifts from this work in the arts:

  • The residents communicated with more sounds and gestures.
  • The staff saw the creative side of the residents.
  • The creative atmosphere opened everyone up to alternate ways to connecting.

For more about Hannah and her work, visit:

http://markmaking.arts.ac.uk

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

COMING SOON: Connecting in the Land of Dementia: Creative Activities to Explore Together 

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Orchestrating a Musical Conversation

imagesWhen Ron’s dad was living in a memory care unit, Ron and I talked with the residents and their families, learning about their favorite songs. We orchestrated a sing-along and had fun working with everyone and putting together a scrapbook of each resident’s special tunes. The combination of music and conversation created a sense of community for us all. Julian West, who we met on a recent trip to London, is creating community through engaging people in music and dance. We really love the way he weaves the two art forms  together and wanted to share his easy and adaptable ideas with you.

Julian West had no idea what would happen at the care facility, but he trusted it would be something wonderful. An accomplished oboist and a teacher at the Royal Academy of Music, Julian assembled a violist, a composer, a dancer, and an artist to share energy and their art with people who are living with dementia.

“This was an experiment to see what could happen,” Julian says. “We worked completely improvisationally.”

percussionOnce a week, for eight weeks, the troupe came to the residential care home and created a living arts experience with residents and staff. They began by inviting everyone to choose a percussion instrument, such as rain sticks, bells, shakers, tambourine, etc.

“We had a musical conversation,” Julian says. “One person made a sound and another answered. We also chatted a lot. People commented on the music or expressed an emotion or impression.”

The musicians added their instruments and the staff and residents joined in, through percussion and voice.  They made fascinating sounds, like an improv jazz singer might do. The dancer twirled around in the center of their circle. Her free movements gave the group a focal point and inspired others to explore various movements.

“I let go of preconceptions and tried to create an open atmosphere,” Julian says.

The artists’ openness helped the “conversation” grow and blossom.

imgresOne woman who was living with dementia held up a tambourine, keeping it still and gazing at it as though it were a beautiful and revered object.

Julian’s first thought was, “She doesn’t know it’s a musical instrument”.

“I let that thought go,” he says. “I saw how expressive she was. Her interaction with the tambourine was beautiful and profound and she allowed us all to see the instrument differently.”

Even if you don’t have your own musicians and dancers at home, you can still create this supportive and creative atmosphere.

  • Share a few percussion instruments, put on some music you both like, and make some joyful noises. Experiment with bee-bop syllables to add a sense of freedom.
  • After the song, talk about the experience, what you liked, what you felt, and any other impressions that came up.
  • Consider inviting a “guest dancer,” someone who likes to move to music, or a child of a friend who’s taking dancing lessons. Go ahead and add your own moves.
  • Invite friends and family to join you. You’ll have something to laugh, and sing, and talk about.

For more information about Julian’s work, visit: www.julianwest.co.uk

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

COMING SOON: Connecting in the Land of Dementia: Creative Activities to Explore Together 

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Tips from a Parisian Artist

IMG_2060There’s something magical about visiting an artist in his studio. Especially if that studio is in Paris.  We were honored to meet Patrick Laurin, artist and art therapist, on a recent trip to France.

In the beginning, Patrick Laurin’s work with people who were living with dementia went slowly. When he first visited the care home and invited people to join him for painting, he heard various reasons the idea wouldn’t work.                                                                                                                                     “I can’t hear you.”  “I can’t see you.”  “I can’t move my arm.”

IMG_2118Patrick, who had quit working as researcher in the pharmaceutical industry so he could create deeper connections with clients, understood the importance of building relationships. Gradually, he got to know the people who lived in the community. He wanted to tailor an artistic experience specific to each person’s abilities and needs.

Over time, the people who couldn’t see, hear, or move were all happily involved in painting.

One woman seemed to blossom when holding the brush and stroking on the paint. Even though she couldn’t later remember to say, “I’ve been painting,” she enjoyed the experience.

One day, Patrick was on another floor in the care community when he encountered this woman and her daughter.

Her daughter said to Patrick,” You are the painter.”

Patrick was thrilled her mother had been able to mention the art therapy sessions. But before he could respond, the mother said, “No, the painter is me.”

“Inside, she was seeing herself as an artist,” Patrick says. “The painting strengthened her identity.”

IMG_2084Patrick has learned to approach each person with flexibility. Sometimes Patrick jump starts his artists with a squiggle of color on the page. Then he steps back to let them respond with their own squiggle. If they’re stymied, he offers a choice of two colors.

He also uses collage techniques to inspire his artists. He selects three separate pictures, each with one recognizable thing, such as a house, tree, or dog. He shows the photos to the artist, and asks, “Which one of these attracts you?” When the artist chooses a photo, Patrick then asks, “Where would you like to put this on the paper?”  He and the artist apply paste to the paper.

“We don’t turn over the picture and apply paste, because the image then disappears and that can be confusing,” he says.

When the picture is glued to the paper, Patrick discusses a color that’s already in the picture.

“You could take the blue in the sky and extend it,” he might suggest.  This suggestion often inspires the artists to start painting.  If they get stuck, Patrick says,  “What might look good near the house?” In this way, the painting expands.

For one woman, painting began as a series of colors and grew into a personal story.

She pasted a house and began expanding the lawn. Then she drew a bridge and weeks later, she added in a dog. At first, she was painting “a house, a bridge and a dog.” As the picture took shape, she said, “This is my house and my dog and this is the bridge we had to cross to get to the house.” The process of painting had loosened memories of her childhood home.

IMG_2090“When I share a piece of art by one of my students, I also share the story behind it,” Patrick says. “The act of creation is more important than the results.”

Tips:

Pick something that is easy for you, the care partner.

Put a point of color on the pages, then stand back. Offer support but don’t paint.

Enjoy the process and don’t get stuck on the results.

 

Thanks to Berna Huebner, founder of the Hilgos Foundation and co-producer of the documentary, “I Remember Better When I Paint,” for suggesting we meet  with Patrick.

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

COMING SOON: Connecting in the Land of Dementia: Creative Activities to Explore Together 

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Three Top Tips for Tuning into Singing: Insights from Finland

images-1Mom was staring into space, oblivious to my brilliant smiles and cheerful conversation. So I started to sing, just to occupy myself. I chose songs Mom liked, such as “Oh What a Beautiful Morning,” “A Summer Place,” and “You are My Sunshine.” Normally, I felt a little down when I didn’t really get to connect with Mom during my visits. But after a half-hour of being a one-woman show, I felt uplifted and energized. And Mom seemed to be making a sound much like humming.

Singing was often a part of my time with Mom. I’ve always felt happy after “making a joyful noise.” Now a study from Dr. Teppo Sarkamo and his colleagues in Helsinki, Finland, explains why.

Dr. Sarkamo’s research found that “regular musical activities can have an important role in maintaining cognitive ability, enhancing mood and quality of life” for people living with mild to moderate dementia. These activities also promote the well being of care partners and offer a beneficial leisure activity for the person living with dementia and the care partner.

imgresInvite Out Your Inner “American Idol”

You don’t need special musical abilities to benefit from listening to music or singing. The research shows that incorporating simple musical activities in daily care is “a cost-efficient way for offering emotionally, cognitively stimulating, and enriching musical experiences.”

The study’s music therapist, Sari Laitinen, kindly offered these ideas for care partners and the person living with dementia.

  1. First, reserve enough time together to spend with the music. The main thing is feeling peaceful together. When singing, choose the songs together from a songbook. In our research project, we prepared a song booklet of our own for the participants, which mostly included well-known Finnish singe-a-long songs from their early years: childhood, teenage years and early adulthood. The care partner can begin by humming a melody first, and if their partner recognizes the song, they can start singing it together. Usually, the partner knows the lyrics “by heart” and their memory retrieval is quite automatic.
  1. Usually the songs bring about personal, autobiographical memories related to the life era and events when the songs were popular. Allow the reminiscence of your partner to proceed on its own time and terms, accepting the stories and not immediately correcting if the people or places happen to be incorrect. You want a mutual feeling of telling each other important things about life. It is all about acceptance and the understanding that something important is shared. The feeling of being understood helps to cope with life.
  1. Listening to music is based on the same principles as singing together: the care partner can suggest some records he/she thinks are meaningful and see what happens. When asking your partner to choose the record, it is good to have some LPs or CDs with a photo of the artist on the cover. Again, it is nice to have a quiet place for the listening and time to share the stories and the feelings that the music evokes. It is good to keep in mind that although the songs are familiar from a long time ago, the experience of music is always “here and now”. By experiencing the music together and by being sensitive to the ”reactions” (emotions, thoughts, memories) evoked by the music, the care partner can offer acceptance and validation of the experiences, the feeling of being understood. Given time, this can lead the discussion from the reminiscence of old times to themes that are important now, such as acceptance of the lived life, mourning of losses, joy in the moment, feeling of vitality, strengthening the feeling of life and so on.

For more information, visit: Singing is beneficial for memory and mood especially in early dementia

Clinical and Demographic Factors Associated with the Cognitive and Emotional Efficacy of Regular Musical Activities in Dementia, Teppo Sarkamo, Sari Laitinenb, Ava Numminenc, Merja Kurkib, Julene K. Johnson, 
and Pekka Rantanene
a,

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

COMING SOON: Connecting in the Land of Dementia: Creative Activities to Explore Together 

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