Category Archives: Advocacy

Paradise Lost and Found: Two Women Take Action on Alzheimer’s

Like most visitors to Bermuda, we were interested in the lush sand beaches and warm tourmaline ocean waters. But we were also imgres-1interested in meeting Liz Stewart and Marie Fay of Action on Alzheimer’s. These  two women are using their considerable energies, connections, and talents to enrich the lives of Bermudians who are living with dementia. Liz and Marie inspired us with their passion and accomplishments and we wanted you to meet them as well.

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“Now what?”

That was the question Liz Stewart asked after her mother was diagnosed with dementia. It was 2004 in Bermuda and Liz could not find any support services for herself or her mom. She was thrust into the care partner’s role without any education on the subject of dementia. Liz knew, “It’s not what you know; it’s what you can learn,” and Liz began learning fast. She soon realized she was not alone. In Bermuda, there were hundreds of people living with dementia.  Liz’s quest to help her mother turned into a determination to help others living with dementia. She formed a non-profit organization, Action on Alzheimer’s, in late 2012. She volunteers her time and works with Marie Fay, an occupational therapist with special dementia training, offering support services, education, and training throughout the islands.

13010685_10154200736871108_2201684352752478315_nLiz and Marie are a two-woman transformation team who have gathered other like-minded people.

They provide free dementia training to the island’s care communities, hospitals, doctors, and families. They collaborate with local musicians and movement specialists and host frequent expressive arts sessions, including drumming, movement, and singing. They work with government officials, advocating for those who need more resources.  And they are talking about the issues, raising consciousness through Alzheimer’s Awareness runs, wine-tasting fundraisings, and community events.

Now, when someone is diagnosed with dementia on Bermuda, they don’t have to feel totally isolated and confused. They can turn to Action on Alzheimer’s.

If you know of other people who are making a difference, please let me know. I love being inspired by the passion and compassion of world-changing souls.
To learn more about Action on Alzheimer’s, visit  www.alzbermuda.com12038228_10153700906971108_3788623937754805612_n

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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An Inside Look at Creative Aging

We are huddled on the floor, concentrating on our assignment. Each of us has shared an important saying or proverb that impacted our lives and now we are turning those six sayings into a song. We have a daunting five minutes to accomplish this creative task. However, we also have songwriter and musician Vanessa Torres from Lifesongs to guide us. After we’ve shared our sayings, Vanessa instantly comes up with a theme–These Are Things That I’ve Learned. Our song centers around that chorus, with each of us weaving in our personal sayings.

In the other three corners of the room, groups are collaborating, turning their sayings into spoken word, dramatic movement, and theatrical improv. Our facilitator, Susan Pearlstein, Founder Emeritus for the National Center for Creative Aging in Washington, DC, and the Founder of Elders Share the Arts in New York City, calls us back to the circle and each group performs their piece. In mere minutes, we have learned something important about each person, we have created an artistic work with people we’re just getting to know, and we have appreciated the power of creating something together.

This was an exhilarating beginning to the third annual NCCA conference on creative aging.

These are things I that learned at the conference:

imagesEvery person is inherently creative. Of course, I knew this. But it is so lovely to be reminded in so many ways. It is so lovely to be invited more deeply into your own creativity through song, dance, theater games, art, movement, and brainstorming. It’s inspiring to be in a room where so many are expressively at ease with their creative spirits.

Here are some insights from conference luminaries. Some are not attributed because I was so raptly listening I didn’t write everything down!

“Creativity is a moment when we look at the ordinary, but see the extraordinary.”

“Art is for everyone. It’s not a frivolous add-on. It’s a vital part of life. Everyone is creative. Dream and dispel the myth that ‘I can’t do art.’ Aging has been treated like it’s all gray but it’s really expansive colors.”  Remarks of Jane Chu, Chairman of the National Endowment for the Arts, Sept 25th, 2016.  Click here to enjoy a video of the Chairman

“Feeling useful is a human right.”

“Fifty percent of our elders feel lonely.” Vice Mayor Karsten Klein, The Hague

“By listening closely to one another, we can help illuminate the true character of this nation, reminding us all just how precious each day can be and how great it is to be alive.” Dave Isay, founder of

StoryCorps, via Eddie Gonzalez

“Bringing what is inside to the outside; it is important to do this as we age.” Mary Luehrsen, National Association of Music Merchants

“Creativity is the connective tissue that we use to build community across diverse differences.” Anne Basting, TimeSlips, ™ Recipient of a 2016 MacArthur Genius Grant

“Instructors need people living with dementia as co-teachers to transform educational goals. “ Dr. Elizabeth Lokon, Opening Minds Through Art

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John Killick (right) and Gary Glazner celebrating the power of poetry

 

John Killick, poet, author and innovator in creativity and dementia, heard this wisdom one day while visiting a memory care community:

“Words of comfort are free, but very necessary.”

“I love it when you hold out your hand and water pours from it.”

“If you don’t ask for the moon, you don’t even get a piece of cheese.”

“You have to introduce yourself or else it all goes brittle.”

“Life is the slackness, the film and the veil.”

“Every time I look for home, I find you.”

John says, “This tells me that people with dementia are really creative and all we have to do is listen and be enriched.

This is just a soupçon of things that I learned. I wish I could have talked to every person at the conference. I wish I could have listened full on to their stories, to their sayings and proverbs, to the things that they knew and the things they had learned. Which is one reason I hope to return to the conference next year.

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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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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How to Create a Network of Dementia Friends

Ron and I recently traveled to Europe and we were lucky to meet with several creative thought leaders working in the field of dementia. Over the next weeks, we’ll share some of their insights with you, ideas we can incorporate into our every day lives as care partners, friends, and dementia advocates. We met with Philippa Tree, Senior International Officer Alzheimer’s Society UK, in a charming coffee shop located near the Tower of London.

The U.K. has more than one and a half million Dementia Friends, and 10,000 Dementia Friends Champions, volunteers who deliver the Information Sessions. Their goal–four million Dementia Friends in the next two years.

IMG_0285Philippa Tree is part of the Dementia Friends team at Alzheimer’s Society UK. The Dementia Friends programme is a social action movement that aims to transform the way England and Wales think, act, and talk about dementia. It started in 2012 when the Prime Minister of the United Kingdom, in partnership with Alzheimer’s Society UK, urged his country to focus on building dementia-friendly communities.  He became a Dementia Friend and challenged others to join him.

The free Dementia Friends Information Sessions help people understand what living with dementia might be like. The sessions also offer small action steps so people can make a difference to those affected by dementia in their community.  Anyone of any age can be a Friend by attending an information session or watching an online video.

Philippa’s work with Dementia Friends extends beyond the UK and across the world. She’s recently been collaborating with partners in the United States to roll out a pilot Dementia Friends program in the near future. At the recent Alzheimer’s Disease International  Conference in Budapest, Philippa facilitated a session with countries including Nigeria, Germany, Israel, Scotland, Canada, and Indonesia.

IMG_0301“After only two years, Dementia Friends has become one of the UK’s biggest social movements on any disease.” Philippa says. “We’re working on using positive language and spreading positive messages as we tackle the stigma around dementia. My current role is to support countries worldwide to implement a Dementia Friends program, and to learn and share experiences.”

While Philippa and her team are working in England and Wales, and worldwide, each of us can make a difference on a local level.  Here are examples of action steps people have enjoyed taking:

 

  • Share positive stories about friends and family who are living with dementia. This helps reduce the social stigma.
  • Volunteer for creative programs and events for those who are living with dementia.
  • Spend time visiting family and friends who are living with dementia.
  • Talk to other care partners and ask how their lives are enriched through their caring experiences.

For more information about the Dementia Friends programme, please visit their website : www.dementiafriends.org.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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Stamping out Alzheimer’s

For twelve years Lynda Everman was a silent caregiver. Her husband, Richard, was diagnosed with Mild Cognitive everman-1Impairment in 1997; in an effort to preserve his dignity, she told few people what they were going through.

“We were both introverts and private people,” Lynda says. “My husband and I were a team, taking care of each other, moving through a situation that was too painful to address in public.”

After she had to move her beloved husband into assisted living, she went on her first advocacy trip to her state capital, Nashville, where she began telling their story. Along with activist Kathy Siggins, Lynda campaigned for a semipostal stamp that could raise money for Alzheimer’s Disease research.

il_570xn-567731996_82cgThe proposed stamp is similar to the Breast Cancer semipostal: consumers pay a little extra for the stamp and the additional funds go to the NIH for medical research. The US Postal Service has raised more than 81 million dollars for breast cancer through sales of that stamp. Lynda and Kathy wanted the same opportunity for Alzheimer’s research.

Lynda has been a tireless advocate for fighting Alzheimer’s. On her advocacy site, Help Stamp OUT Alzheimer’s, she shares research and legislative updates, caregiving tips, the work of fellow advocates, and words of encouragement. She is a founding member of three national networks, all under the umbrella of USAgainstAlzheimer’s: ActivistsAgainstAlzheimer’s, ClergyAgainstAlzheimer’s, and WomenAgainstAlzheimer’s and a Board Member of Beating Alzheimer’s By Embracing Science. Together they campaign for policy change and for increased funding for Alzheimer’s research.

Lynda has written to every member of Congress urging them to cosponsor the Semipostal and she and Kathy have made countless visits to members.

Lynda and Kathy visited more than 60 members of Congress, trying to persuade them to sponsor and approve the Alzheimer’s semipostal. Both the House and Senate have to give their “stamp” of approval before the Congressional Budget Office can consider the project.

The bill was introduced in the House as part of the Alzheimer’s Action Now initiative and has 63 cosponsors. Sen. Mikulski will reintroduce a companion bill in the Senate very soon. But if the bill doesn’t pass by the end of the year, it expires.

Here’s where you come in. The stamp requires no governmental funding or increase in taxes. It’s bi-partisan and bi-cameral. You can help RIGHT NOW by calling your congresspersons and asking them to cosponsor H.R. 3092.

“It is important to share your story and speak out for those who cannot,” Lynda says. “ Please help them and their caregivers—and help us make this fundraising stamp a reality.”

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Ask that the Postmaster General use her authority to issue an Alzheimer’s Disease Research Semipostal independent of the legislative process. Simply go to: : https://www.uspsoig.gov/blog/putting-stamp-good-causes

To call the U.S. Capitol Switchboard, dial 202-224-3121 and ask to be put through to the offices of your two Senators and Representative. If you don’t know the names of your representatives, you can get that information, as well as the direct line to their offices, by visiting: http://www.contactingthecongress.org.

For more about Lynda’s work, please visit:

www.clergyagainstalzheimers.org and http://alzbabes.org/

In addition to founding ClergyAgainstAlzheimer’s, Lynda served as a editor for “Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers” and their recently released Leaders Guide for support groups. She has a blog post on UsA2: http://www.usagainstalzheimers.org/blog/its-time-alzheimers-stamp

For more about the semi postal, please visit http://www.alzjourney.com/2014/02/15/help-stamp-out-alzheimers/

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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