LeadingAge Magazine · September/October 2013 • Volume 03 • Number 05

Building a Person-Centered Culture for Dementia Care

August 30, 2013 | by Debra Wood, R.N.

Humanistic and holistic principles encourage caregivers to “step into the world” of people living with Alzheimer’s or other dementias.

With millions of Americans experiencing dementia and the number growing with an aging population, researchers continue to seek effective prevention and treatment methods, while many long-term care providers are placing more emphasis on how best to care for people with dementia.

“We’re hearing more from families regarding their concerns about the quality of care and services available for their loved ones with dementia, not surprising given the millions of people affected by it and how costly care is,” says Jackie Pinkowitz, MEd, chair of CCAL-Advancing Person-Centered Living in Colts Neck, NJ, a national advocacy organization, which created the person-centered National Dementia Initiative, and an instructor at Rutgers University School of Social Work, Gerontology Program.

The 2013 Alzheimer’s Disease Facts and Figuresfrom the Alzheimer’s Association estimated 5.2 million Americans have Alzheimer’s disease, a number projected to increase to 7.1 million by 2025 and 13.8 million by 2050.

“The best practice is person-centered care,” reports Ruth Drew, director of family and information services at the Alzheimer’s Association in Chicago. “Care is focused on the individual.”

Person-centered care offers a humanistic and holistic approach to caring for someone. It incorporates not only physical considerations but also the person’s psychosocial and spiritual well-being.

“It’s a multidimensional framework, and it requires owners and a governance board wanting to make these changes,” says Pinkowitz.

The Dementia Initiative brought together an expert panel to determine best person-centered practices and offer guidance. The initiative produced a consensus white paper, Dementia Care: The Quality Chasm.

“We want stakeholders across research, policy and practice to use this paper as a call to action to collectively address and advance person-centered solutions,” Pinkowitz adds.

The document presents a history of the philosophy for person-centered care as well as operational and personalized practices for delivering care in this way. It also offers recommendations to address barriers and challenges to care.

Many LeadingAge members have embraced person-centered care and have developed innovative programs to advance dementia care within their organizations.

Switching from an institutional focus to a resident or person-centered focus requires a change in organizational culture, often not an easy task. Staff must hone in on the things that improve the person with dementia’s quality of life.

“It’s the right thing to do, and it makes caregivers’ jobs more enjoyable and safer,” Drew says.

People with dementia still have a human desire to connect with other people and have a sense of self, Drew adds. Caregivers can use residents’ life experiences as a key to connect.

“You have to know the person and who they truly are, know their interests and values,” Pinkowitz advises. “Don’t focus on what they cannot do, but what they enjoy and can do. It’s about creating warm, caring relationships.”

Once caregivers really know the people in their care as individuals, they learn what things the older adult finds comforting and upsetting, Drew explains. It also requires watching for cues. For instance, if someone shies away from or appears fearful of a therapy dog that most people are fawning over, divert that person to a different activity.

Long gone are the days of “reality orientation,” in which the professional caregiver would correct the dementia patient and attempt to reorient him or her to the caregiver’s reality. Rather than trying to tell someone determined to “go to work” that they are no longer employed, the better response is to give them a task to do.

“That was a culture change,” says Karen Zobel, administrator of The Baptist Home at The Community at Brookmeade in Rhinebeck, NY. “We had to reassure staff that they are not misleading the resident, but rather stepping into his or her world.”

The Baptist Home is in the process of training all staff and volunteers, using the Centers for Medicare & Medicaid Services’ Hand in Hand program. The six sessions help with understanding dementia, provide resources to use with residents, advise not taking behaviors personally, and suggest when to pull back and how to approach residents and families.

“I was given tools to teach me how to step into that other person’s world, and that was the most important part of the training—how to receive them where they are,” adds Susanne Bernard, development director at The Community at Brookmeade.

The use of antipsychotic medications also has fallen out of favor, after a Department of Health and Human Services Office of Inspector General report about atypical antipsychotic Medicare drug claims for people with dementia living in nursing homes. The office found 14 percent of the residents had such claims, and 83 percent were ordered “off label.” In response, the Centers for Medicare & Medicaid Services launched an initiative to reduce the use of those drugs.

Ann M. Kolanowski, PhD, RN, a nursing professor at Penn State University in University Park, PA, led a grant-funded multidisciplinary effort to create a person-centered toolbox for behavioral health, which she expects will be released this fall.

The toolkit for nursing homes includes information about establishing a nondrug focus throughout an organization and offers suggestions of evidence-based and cost-effective methods other than medications to manage difficult behaviors. Recommendations include using music to calm people down and exercise programs to channel excess energy in people who wander.

“All our communities are seeing an increase of dementia in their residents, whether in CCRCs or assisted living. LeadingAge members are interested in quality of life and care, and many are looking for guidance in how to best approach dementia. Even communities with dementia programs are wondering how to make them better, how to find educational programs to help them.”

Those are the words of Kathleen Blake Curry, chair of the new LeadingAge Innovative Dementia Services Steering Committee. Curry is vice president, strategy for dementia care for EMA, Eldersburg, MD.

The Steering Committee was launched this year in response to a growing interest in more sophisticated approaches to dementia care among providers. The committee’s 11 members represent providers across the continuum of care.

The range of “products” that might come out of the committee’s work will likely include a bevy of resources on the LeadingAge website—a variety of information about Alzheimer’s disease and other dementias as well as links to other organizations with valuable expertise.

But the knowledge and practices of aging-services providers themselves, says Curry, should be a priority.

“We’d like to have a very engaging type of presence that would be educational and inspirational,” says Curry. “It’s still a work in progress, [but we’re] using the concept of a playbook—giving basic information about dementia, expanding on the various ways communities can support this, whether adult day, a dedicated secure unit or a program in the community. We want to see all the ways people serve those with dementia, including those in the outside community.”

Curry says there is great value in spotlighting programs and innovations that can inspire providers.

“We want to be very careful to tell significant stories,” she says. “We want also to come up with real-life examples, programs and innovations that can inspire our members and by telling a story, make things more accessible to them.”

She also wants to be sure that guidance is available for providers with limited resources, who may “need a kick-start.”

While the Innovative Dementia Services Steering Committee continues its work, a new LeadingAge listserv, on “Innovative Dementia Practices,” is now operating. Sign up for LeadingAge listservs here.

All behaviors are communication. When someone acts out of character it means they are trying to tell us something.

“We have to look at the world through their eyes and try to decode what they are saying,” Drew says. “We start from the premise that everything they do has a meaning, then that helps us figure out the meaning and respond to what they are trying to say.”

Drew offers as an example, a demure woman who always dressed well but suddenly started taking off her clothes from the waist down. The nurse suggested obtaining a urine sample, which indicated the woman with dementia had an infection. Removing her clothes was an attempt to relieve the discomfort. Once treated, she kept her clothes on.

“People who cannot talk about their needs still have needs,” Drew reports. “They still are hungry, thirsty, need to use the restroom, or are hot or cold. If we are good at figuring out what they are trying to say, we give much better care. And it’s a lot better caring for someone happy and comfortable. It works out well for everybody.”

Drew also recommends slowing down and not trying to move too fast around people with dementia, who cannot process things quickly.

“If you take a gentle calm way at their pace, it helps them relax and be at their best,” Drew advises.

Traditionally difficult times, such as meals and bathing, can improve with a person-centered approach.

Drew recommends a pleasant, homey environment for dining, to feed finger food and use color contrasting foods, offered one or two at a time. Rather than feeding the person, encourage the person to do as much as they can for as long as they can. Use cuing or hand-over-hand techniques to assist rather than do for the person.

People with dementia often have issues with water. Warm the bathroom. One that looks like home can be helpful as can trying to keep to a former routine. Partially cover the person with a towel and offer a washcloth to hold over the face. Perhaps sing with a person who used to vocalize in the shower or offer a favorite cookie to someone food-motivated.

“Knowing the person and exuding warmth can overcome a lot of difficulties,” Drew says.

The Baptist Home established its New Day program to provide creative activities for residents of its skilled nursing facility. The Dyson Foundation provided a $10,000 grant.

Residents can participate six days per week in the morning, afternoon or both. About 95 percent of residents, at all functional levels, participate in one or more sessions. Certified nursing assistants assigned to activities greet participants as they arrive to make cookies or pizza, create artwork, exercise or reminisce about movies.

“We try to do things that are the norm,” Zobel says. “This pattern and routine has decreased behaviors and decreased confusion. We have residents wake up in the morning expecting to go somewhere.”

Residents may think they are going to work or to school. Families are encouraged to join in, or sit or walk in the Courtyard, where The Baptist Home has installed a mailbox stuffed with “mail,” a clothesline, a gardening cart, shady seating and a bus stop/train station. When a resident says he needs to catch a bus to work, a staff member takes him to that “bus stop.” The residents can pick flowers and make centerpieces. The facility also has established a walking program.

“It’s thinking out of the box,” Zobel says. “Everybody is different, and you have to have a number of resources in your toolbox.”

Some patients have come off medications. The facility does not use restraints.

The Music and Memory program allows residents to listen to familiar music on an iPod. The music tends to calm residents. It also helps them briefly regain skills they had lost to dementia. The effect lasts for a short time after the music is off, giving families opportunities to converse with loved ones.

Eliza Jennings in Lakewood, OH, has introduced an intervention, called SAIDO Learning™, which has reduced and reversed symptoms of cognitive impairment, reports Deborah Hiller, Eliza Jennings president and CEO. It is the first U.S. organization to incorporate the program, which originated in Japan. Eliza Jennings expanded the program to all of its locations and will soon become the only training center for the intervention in the United States.

Hiller learned about the nonpharmaceutical intervention and an opportunity to partner with the Kumon Institute for Education in Japan on a research trial and did not hesitate to participate.

“I saw this approach could drive person-centered care to a greater degree than it existed for us, even though we had been involved with the person-centered care movement for more than a decade,” Hiller says. “The research from Japan demonstrated that SAIDO Learning improves the symptoms of dementia.”

SAIDO Learning consists of 30-minute therapeutic sessions of simple reading, writing and arithmetic five days per week for each participant, called a “learner,” with a staff member, called a “supporter.” Residents pay $150 per month. Donations provide funding for Eliza Jennings residents unable to pay for the program.

Each person is started at his or her individual level and progresses. The learners complete the worksheets in a way in which they are always successful. Through a phenomenon known as the transfer effect, the prefrontal cortex stimulation causes improvements in other aspects of the learner’s memory, such as activities of daily living or engagement with others. Participants must continue in the program for sustainable results.

Each supporter works with two learners. Although it sounds labor-intensive, Eliza Jennings has not needed to add staff.

The trial, conducted at Eliza Jennings in 2011 with 23 residents and 24 controls at a different in-network community during a six-month period, found residents in the intervention group improved on the mini-mental state exam, while the controls’ performance declined. Additionally, as a secondary outcome, MDS results showed a 40 percent improvement in the intervention group and a 75 percent decline in the controls. Mood severity improved in the intervention cohort while the controls experienced a clear decline.

“It’s almost beyond belief, until you see it,” Hiller says.

Eliza Jennings is training all of its employees in SAIDO Learning, so they could recognize subtle improvements occurring in participating residents, such as a shadow of an expression on a learner’s face.

“Daily we see changes,” Hiller reports. “The data supports the day-to-day improvements, which border on miraculous.”

Residents have regained continence, rest more comfortably, can use the telephone and communicate with family members, and are able to do more for themselves.

Hiller anticipates SAIDO Learning could have profound effects on health care costs. Care for people with dementia will cost $203 billion this year, according to the Alzheimer’s Association fact book.

“In Japan, they have seen a reduction in the amount of care people need,” Hiller says. “It could reduce health care costs in the United States if SAIDO Learning was widely available.”

CJE SeniorLife of Chicago recently unveiled a new iPad app that builds on its established Art in the Moment program, a joint venture between CJE SeniorLife and The Art Institute of Chicago. The Art in the Moment app was made possible with funding from the Alzheimer’s Foundation of America and developed by SchwarTech Consulting LLC. The app displays selected works of art found in The Art Institute’s collection to serve as a conversation piece between caregivers and individuals with Alzheimer's disease, stimulating interaction and encouraging self-expression. It also offers ways for users to engage in art-making activities on their own.

Works of art are arranged by themes, or modules, such as “Celebrations,” in which older adults and their families can explore how various celebrations have been depicted in art, and reminds viewers of the many opportunities we have to applaud life as we live it. The app launched with the “Celebrations” module, and will continue to release other themes over the next several months, such as Rhythm and Art, Modern Portraits, Jewish Artists and American Environment, for users to enjoy new kinds of art.

The app took close to one year to create—from concept to creation, testing, approval by Apple, and launch to the public. Throughout the process, CJE discovered that its existing three-year partnership with the Art Institute was invaluable in being able to clearly express its vision to the app developer.

For more information and to download CJE SeniorLife’s Art in the Moment app exclusively for the iPad, visit the Art in the Moment page on the CJE website.

Written by Nicole Bruce, PR & media specialist, CJE SeniorLife, Chicago, IL.