Advocacy

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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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  interested 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.com

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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

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 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

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.

 

Four Ways to Support Care Partners

We all know that wrenching feeling of wanting to support our friends who are immersed in being care partners but not understanding how best to help. Many of us know the feeling of being exhausted care partners and not knowing just how to ask for the help we need.

Mara Botonis, author of When Caring Take Courage, created a list of meaningful tips, captured in a note to friends from a care partner. I really appreciate her empathetic yet practical outlook and wanted to share a few of her ideas with you.  cut flowers

 

 

The Present in the Present

I so appreciate you wanting to help me, I don’t always have time to read a book, watch a movie, or accept your generous invites to restaurant meals or spa treatments. The best gifts save me time and energy and are a treat I can enjoy at home without arranging care. I would love a visit that includes a pre-made dinner we can share. Any of these thoughtful gifts would lift my spirits: a CD with my favorite songs, a favorite dessert or snack, a chance to play a favorite game with you, a soft cuddly blanket, or fresh flowers.

 

Write Me

Write me a note or an email. I can’t always talk on the phone or devote the time I’d like to an in-person visit.   I’m usually only “free” to socialize when my loved one is sleeping and even then, I am alert to his needs. If you write to me, I can read it when I have time to truly enjoy it.

 

Share Memories

women photo albumReminisce with me. I willingly and lovingly put another person first for most parts of my every day. Sometimes I feel like big parts of me get lost so please remind me of our earlier times together. You may be the only one I get to do this with.

 

Please Stay in Touch

You don’t have to worry about saying or doing the right thing. I don’t always know what that is either. Please just keep trying. Don’t avoid calling or coming over because you may be feeling uncomfortable or unsure. I feel that way too sometimes and I’m here every day. Please don’t forget about me. I’m still here. I still love you. We still need and want you in our lives. Please reach out. There isn’t any way you can interact with me that would be unwelcomed or wrong. Just keep trying. #

 

When caring takes courage

After thirty years working in healthcare throughout the United States, Mara’s life was forever changed when a close family member was impacted by Alzheimer’s.

Please visit her website:

Website: http://www.whencaringtakescourage.com/

Amazon: http://www.amazon.com/When-Caring-Takes-Courage-Compassionate/dp/1478730536/ref=tmm_pap_title_0?ie=UTF8&qid=1400634987&sr=8-1

 

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

Doing the Work of Our Hearts

I wanted to share a story of mine that just came out in the new Chicken Soup book : Volunteering & Giving Back.  I’d love to hear about the volunteer experiences that have inspired you.
Warmly, Deborah
Volunteering
  The Work of Our Hearts

 I woke up in the middle of the night with the answer I’d been seeking: I would self-publish the book of essays I had written about my journey through my mother’s Alzheimer’s and I would donate all the monies from the book to Alzheimer’s research and programs.

It was the summer of 2006, and for weeks I’d been wrestling with a question:

Should I seek a traditional publisher or independently produce the book? Both seemed daunting; in the past, I had primarily written books for and with other people and publication wasn’t my problem. But this book, Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey, was the work of my heart, born out of my desire to stay connected with my mother and find the joys and blessings in her experiences with Alzheimer’s. I wanted to share my stories of hope so they might help other caregivers.

“What about donating a portion of the proceeds?” my partner Ron asked. I was already making a marginal living; Ron’s suggestion was practical but I shook my head.

“I think I’m supposed to donate it all,” I told him. “That way, instead of selling a book, I’ll be raising money for a cause I’m passionate about.”

I talked through the details, consulting knowledgeable friends, an attorney and our local Alzheimer’s Association. My mission: to use the book as a catalyst to raise $50,000 for Alzheimer’s. There was one glitch; I estimated the cost of designing and printing could be in the thousands. Where would I get the money? But even though I was often worried about funds, this hurdle didn’t bother me. My intuition was strong. I was supposed to do this and would raid my savings if needed. Ron was excited about the project and pledged to work with me and help me make it happen.

“We will also help you,” my friends Rex and Jane said. They had shepherded several books through production and were extremely savvy. Plus, they wanted to be part of my mission.volunteering 4

Over the next months, Ron and I spent hours with Rex and Jane, working on design, cover, production and print details. Endlessly patient, they were dedicated to creating the book I envisioned. And they kept their fees to a minimum.

When the finished product arrived months later, I felt a sense of pride and completion. The beautiful cover featured one of my mother’s paintings, the type was easy to read, the interior design inviting.

Ron and I had often performed my stories together, and we began speaking and sharing stories from the book with Alzheimer’s associations, healthcare professionals, caregivers’ groups and others. When we traveled, we reached out to Alzheimer’s groups to set up speaking engagements. We were always moved and inspired by the people we met.

eye“The person with Alzheimer’s is the pupil in God’s eye,” the priest in a fourteenth-century church in Florence, Italy told us.

“Your story is my story,” a man in Istanbul, Turkey said.

“I’ve been caring for my mother for ten years,” a woman from Brooklyn, New York said. “It has been the most meaningful experience in my life.”

“When I learned Mama had dementia, I quit my job in Houston and moved back home,” a woman in St. Thomas, Virgin Islands said. “I wanted my children to know their grandmother in all the stages of her life and I wanted to be here to care for her.”

Sometimes we spoke in front of hundreds of people; other times we talked to groups of ten. When possible, we brought books and people often donated more than the suggested fifteen-dollar price, knowing that all the proceeds went to Alzheimer’s research and programs.

By 2011 we had done it! We had raised $50,000 for Alzheimer’s. But we kept going; we were still learning and growing. The work was healing for both of us and we loved connecting with other caregivers.

In 2012 I was ready to give the book a wider distribution and reached out to Central Recovery Press. They published an enhanced edition in 2013. Today, our fundraising journey continues as we donate a portion of our proceeds to this important cause.

The self-published version of Love in the Land of Dementia served as a catalyst for raising more than $80,000 for Alzheimer’s programs and research. My stories of looking for the blessings in the journey reached thousands of people, fulfilling my goal of making a contribution to the world. And the bonus was that both Ron and I had changed.

By following our intuition and doing the work of our hearts, we became more compassionate, understanding and trusting.volunteering 2

by Deborah Shouse

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

Four Page-turning books

imgresI have to say, I wasn’t really in the mood to read a memoir about the Alzheimer’s journey. But a friend recommended The Long Hello and I sat down to leaf through it. Four hours later, after both tears and laughter, I had completed the lyrical journey, an artful weaving of rational recall and poetic pouring. I could see and feel Cathie Borrie, the author, and I felt I knew her fanciful, magical, distracted, needy, exhausting, interesting mom. Cathie’s honesty and her ability to capture the intricate connections inherent in this dementia journey were like walking a familiar road through a mysterious jungle. This book is a burst of beautiful writing anchored by deep poignancy and meaning.

 

imgres-1I also really enjoyed Martha Stettinius’ Inside the Dementia Epidemic: A Daughter’s Memoir. Meeting Martha and her mom on the pages of her searching memoir was like rediscovering old friends. I identified with Martha and I was also caught up in her story. I was moved by her struggle to truly care for and take care of her mother, while still preserving her soul and her family life. Martha did a great job of creating a compelling and readable story, while offering a wealth of practical tips and resources.

imgres-2Several weeks ago, I wrote about my first visit to an Eden alternative home, the magical Sierra Vista in Santa Fe. The founder of Eden Alternative is Dr. Bill Thomas, who is one of the pioneers in making dementia care more home-like and person centered.  His book, Life Worth Living: How Someone You Love Can Still Enjoy Life in a Nursing Home – The Eden Alternative in Action, is rich with ideas for care facilities. Home care partners can use his concepts to make their household even more creative and welcoming. As a bonus, Atul Gawande wrote about Dr. Thomas, in his fascinating book, Being Mortal. You’ll be inspired by Dr. Thomas’s innovation and his tenacity.

imgres-3It’s not often that you read a book about dementia care and laugh.  But when Mara Botonis wrote about carefully laying out supplies for a creative arts project, only to have her loved one staring out the window, then studiously plucking lint from his sweatpants, I had to laugh. I could see my beautiful mom doing exactly the same thing. Mara’s book, When Caring Takes Courage: A Compassionate, Interactive Guide for Alzheimer’s and Dementia Caregivers, is all about making the most of our moments together. Mara knows about dementia from her career in senior living and she has taken the personal dementia journey with her beloved grandfather. She orchestrated the book to make it easy for the exhausted care partner to problem solve and get instant help. She offers activities and projects for a range of abilities and situations.

imagesWhat books are spurring you onward these days? I’m immersed in writing my new book, tentatively titled Creativity in the Land of Dementia, so I’m focused on the topic in all its forms. The great news is that there are so many amazingly imaginative people out there, making the world a more connective and creative place for those living with dementia, their care partners, family, and friends. Which means, making the world better for all of us.

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