Several months ago, I was delighted to write an article highlighting some of the American leaders in dementia care. I will be occasionally spotlighting luminaries from that article who are redefining dementia and focusing on wellbeing.
A version of this piece appeared in Signpost Journal: Journal of Dementia and Mental Health of Older People. This excellent journal from Wales, UK, offers a variety of informational and inspirational articles. I am honored to be a contributor.
Redefining Dementia and Focusing on Wellbeing
Late every afternoon, Roger paces the corridors, pausing at the locked door, fiddling with the keypad, sometimes even setting off the alarm before he resumes his pacing. Instead of labeling Roger’s behavior as “sun downing,” Allen Power, MD, teaches practitioners to ask themselves: Which vital element of health and happiness is missing from Roger’s life: identify, connectedness, security, autonomy, meaning, growth, and joy. By doing this, Dr. Power is redefining dementia and focusing on wellbeing.
Dr. Power is a geriatrician and educator on transformational models of care, with a focus on people living with changing cognitive abilities. He is also the author of two groundbreaking books, Dementia Beyond Drugs and Dementia Beyond Disease: Enhancing Well-Being.
He defines dementia as, “A shift in the way people experience the world around them.”
“I believe that most of people’s on-going distress is due to the erosion of one or more aspects of well-being, from the care environment, and/or the person’s cognitive changes. Imagine these domains of wellbeing as seven glasses being emptied. Start filling the glasses and notice the results.”
As Dr. Power trains and consults with memory care communities around the world, he sees meaningful results from this compassionate approach. Suddenly, Mary is not constantly calling out night and day. Bill is not hitting the aides when they take him to the shower. Roger is not setting off the alarm or trying to open the exit door.
“There’s no sure answer,” Dr. Power says. “You need to understand the individual and experiment until you reach the root of the problem. People may be looking for connectedness. They may feel anxious and insecure. They may be bored.”
If someone is repeatedly trying to leave the building, Dr. Power might ask: Are they feeling insecure? Are they feeling lonely and trying to reach someone they love? Are they yearning to connect with an important part of their identity, such as a beloved garden, horse, dog, or pick up truck?
Working toward an Inclusive Future
Dr. Power uses a strength-based approach to work on enhancing wellbeing. He encourages developing “brain ramps,” cognitive supports that help people move through the day in meaningful ways.
“With this positive approach, I can now look at a challenging scenario and offer insights,” Dr. Power says.
Beyond the care of the individual, Dr. Power believes in examining ingrained rituals and routines of institutionalized care, including all meals at a certain hour, with an aim of moving to a more individualized and meaningful mode of care.
“We can make mundane activities such as bathing or getting ready for bed more meaningful and relational than we normally do in long-term care,” he suggests.
“We need to support people instead of dehumanizing them,” he says. “We need to be inclusive and try harder to understand them.”
Dr. Power believes integration into society is a basic civil right.
“Imagine if people who lived with cancer, arthritis, or diabetes could only live with others who shared their medical condition. There’s a problem with seeing the disease instead of the people,” he says.
Dr. Power is contributing to a future where all communities are dementia inclusive and where dementia is just viewed as another way that people see the world.
For more about Allen Power, MD, internationally known geriatrician, educator, and author , please visit:
Dr. Power is participating in Dementia Action Alliance’s Reimagine Life with Dementia Conference, June 25-27.
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.
“Art is the vehicle for creating connection and community,” Ari Albright said, as we toured her eclectic art studio/teaching space in Vermillion, South Dakota. Ari serves as Program Coordinator and Artist-in-Residence for Sanford Arts Vermillion (SAV), located at Sanford Vermillion Medical Center. We’d read about her innovative approach to arts and dementia and we wanted to learn more. During our visit, we witnessed much more than an arts program. From the executive team to the nursing team to the dietary staff, we experienced a powerful spirit of collaboration and a dedication to enriching the residents’ lives through the arts. This sense of purpose permeated Sanford Vermillion Medical Center, which contains a hospital, clinic, independent living center, and a long term care facility, complete with a special care dementia unit.
After our tour of her studio, Ari led us over to the facility’s boardroom, where we met Mary Merrigan from Public Relations, Cindy Benzel from Human Resources, and Jill Christopherson, Executive Assistant.
“Ari was brought in to enrich activities in the long term care center,” Mary told us. “Our staff completely embraced the program: it made their work less rote and more meaningful.”
Tim Tracy, CEO, dropped in to greet us. “We’re very proud of the program and of Ari,” he said. “It’s made a big difference in the lives of our residents and of our staff.”
Setting Goals and Exceeding Expectations
Since 2011, Ari has facilitated arts engagement in healthcare environments. She started doing art projects with the patients, staff, and families at the Sanford Cancer Center and Children’s Castle of Care Hospital in Sioux Falls, South Dakota. In 2012 when Ari approached Tim and his team about bringing her participatory program to Sanford Vermillion, they were interested. Tim, along with Ari and members of the executive and care teams, set three goals for the art program:
- Enrich activities for residents with dementia and special needs adults
- Uplift the environment by offering art displays on the center’s walls
- Care for caregivers by taking the redundancy out of the staff’s daily job
Ari’s program, which consisted of three to four weekly two-hour art programs that supplemented the on-going activities agenda, worked beyond their expectations. Ari trained members of the care team to become involved in art activities, both when she was there and when residents needed something soothing or meaningful to do. She worked with volunteers and family members. She created “Art Kits,” a rainbow-colored box with an easy project that a resident could do on her own.
The residents participated in every aspect of this multi-faceted textile art project, which now hangs in the special care unit. This was inspired by Wassily Kandinsky’s Color Studies.
In 2012, 30 percent of the facility’s 62 residents were taking psychotropic medications. (The national norm is between 25-30%). By the end of 2013, when the arts program had been in place for one year, only 20 percent of the 65 residents were taking the medications. Ten residents had a reduction in medications and seven simply no longer needed the drugs. In October of 2014, after two years of the arts program, only three percent were taking psychotropic medications. Reducing these strong medications enriched the residents’ quality of life in a variety of ways, including making them less susceptible to falls, increasing their alertness, and piquing their appetites. Ari’s media included painting, sand, clay, fabric, and origami. Along with the tactile and visual experiences, she wove in literary arts, music, and movement. These projects increased residents’ creative thinking, decision-making, playfulness, cooperation, conversations, patience, and sense of meaning. The families were often astonished by the creations and contributions of their loved ones. The staff felt a greater connection with the residents and an increased sense of empowerment.
“The artistic tools are only a catalyst for connection,” Ari says. “This program is about the process of doing something that feels relevant.”
It Takes a Team To Say Yes! To Art and No to Psycho-tropic Drugs
A collaborative team of executives, management, and staff worked together to implement and integrate this arts program. Each one played an important role. The executive team paved the way, finding funding, navigating the system, and offering vital goal setting and guidance. Nursing professionals and social workers educated doctors, family, and staff on the program’s benefits and created time for staff to participate. The dietary department displayed residents’ artwork on the cafeteria walls and now hosts quarterly artists’ reception.
This is part of the team from Sanford Vermillion Medical Center that improved residents’ lives by embracing participatory arts programs in their senior living and special care communities. Back row: Kay Hoesing, MDS Coordinator; Gayle Matzke, DON; Jeff Berens, CNO; Rebecca Froehlich, SAV Intern/Volunteer; Ron Zoglin; Front row: Jill Christopherson, Executive Assistant; Melissa Langle-Lee, Social Work; Deborah Shouse; Ariadne (Ari) Albright, Program Coordinator and Artist in Residence
For more information about Ari, visit
Facebook page: Art with Ari
For more information about the Sanford Vermillion arts program, visit:
Do you have a story about collaboration, arts and dementia? If so, I’d love to hear it!
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
Alzheimer’s is a democratic disease and no one is immune. Movie stars, politicians, bankers, comedians, business moguls, professors, and homemakers– any one of us could face living with dementia. Karen Love is a founder of the Dementia Action Alliance, which focuses on improving dementia care for the more than five million Americans currently living with the condition. Karen works with governmental agencies to define and improve a person-centered standard of care for elders and for those living with dementia. She’s an inspiring leader and I wanted to share some of her insights with you.
Q and A
Q: What prompted you to form a non-profit and become an advocate for aging and for those living with dementia?
A: Advocacy must be in my DNA. Even as a girl, I was always sticking up for people and their rights. I initially worked as an administrator in assisted living and I became concerned about how fast the industry was growing without paying attention to the needs of its vulnerable residents, particularly those who had dementia. In 1996, I founded a non-profit organization, Consumer Consortium for Assisted Living (CCAL), to advocate for, support and educate consumers about assisted living. After a decade, we renamed the organization CCAL—Advancing Person-Centered Living, and we expanded our mission to encompass all elder care settings. We focused on promoting quality of life and person-centered practices.
Q: You’ve worked with Medicaid and Medicare to help define and implement a mind-set of person-centered care. What does person-centered care mean and why is it so important?
A: The World Health Organization and the Institute on Medicine recognize Person-Centered practices as the gold standard. Person-centered practices support people’s emotional, social, physical, and spiritual well being. They focus on treating people with dignity, fostering choice, independence, and feelings of purpose, value, and self-worth. These practices also help people maintain normalcy in their daily life. I’ve had the honor to help shape the person-centered framework for CMS’s home and community-based division, which support such state-based services as home care, adult day, and assisted living for individuals Medicaid eligible.
Q: You’ve now gathered thought leaders in the fields of aging and dementia, building a coalition of people dedicated to “making dementia better” in our country. What are some of your goals?
A: Our goals include:
- Enhance knowledge about dementia and person-centered care practices so people living with dementia are no longer stigmatized.
- Improve healthcare practitioners’ understanding and knowledge about dementia care, person-centered practices and treatment, and make sure materials are accessible.
- Share information with care partners and healthcare providers about the value of attending to emotional, social, and spiritual well being.
- Increase federal and state funding for dementia-care related support.
Q: What are some inspiring actions that ordinary caregivers or persons living with dementia have taken?
A: Just a couple of examples include:
- Michael Ellenbogen is a person who is living with dementia. Prior to being diagnosed, he was a high-level bank executive. He has become a tireless advocate and spokesperson for dementia.
- Lori La Bey started an online weekly radio program called “Alzheimer’s Speaks” to provide a venue for people to learn about dementia, share their experiences, and be supportive.
Q: What are three easy things each person can do to act as an advocate for those living with dementia?
A: Here are some suggestions:
- There are three ways things change nationally: (1) the President makes it happen (2) Congress makes it happen (3) the groundswell of people’s voices and actions make it happen. There has not been an interest for the first two methods. Historically, method 3 was effective for impacting and changing issues such as HIV/AIDS and breast cancer. The Dementia Action Alliance brings people together so we can be a catalyst for change.
- Words matter. Often people living with dementia, including Alzheimer’s, are called “patient,” “victim,” “demented,” and “sufferer” – and the condition is called a “dementing illness” and an “affliction.” This type of language can impact how people living with dementia feel about themselves and how they are treated by others. Print out “Use Words Wisely” from the website – www.daanow.org/words-matter/- and help educate others about what words to use.
- Email the Dementia Action Alliance at email@example.com about your interest in volunteering. Consider making a financial donation at www.daanow.org The more people involved in the Dementia Action Alliance, the sooner and greater the impact.
Please feel free to share this information with your friends and colleagues. The more we all work together, the more effective our voices will be.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.