Active aging article alzheimers dementia keep in mind

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Moments that matter Approaches to connect with the person with dementia Target market Alexis Abramson takes aim at the 50+ demographic Prescription for success ‘Water down’ negative exercise for positive results


Person-centered approaches

to connect with people with dementia in the moment

Experts share engagement strategies that go beyond structured programs and enhance individual wellness by Marilynn Larkin, MA Emerging research confirms the importance of “person-centered care”—also known as “resident-directed” or “relationship-centered” care—in maximizing quality of life and well-being for people with dementia. In an article1 published recently in the American Society on Aging’s journal Generations, Karen Love, founder, and Jackie Pinkowitz, MEd, board chair, of the nonprofit consumer advocacy organization CCALAdvancing Person-Centered Living, write that “person-centered care focuses on the individual needs of a person rather than on efficiencies of the care provider; builds upon the strengths of a person; and honors their values, choices, and preferences.” The authors quote an individual who articulated his feelings about such care, stressing the interactions that took place spontaneously:

“The nurses got to know me and could support me in ways that were personally meaningful … These might sound like little things—a soda, an art project, a few minutes spent talking … nothing they did cost extra money or required intensive training, but the fact that they saw me as a person—and treated me like one—helped restore my dignity and sense of personhood.”1 Separately, in the white paper Dementia Care: The Quality Chasm,2 written and edited by Love and Pinkowitz with input from more than three dozen dementiacare experts, the authors offer additional perspectives on brief interactions, and acknowledge that, occasionally, alone time is also needed: “Everyday social interactions, including brief positive interactions with casual acquaintances and caregivers, foster a sense of Continued on page 28

Person-centered approaches to connect with people with dementia in the moment Continued from page 26 well-being. Laughing, singing, or simply being with others can exert a calming or energizing influence. Knowing that one is part of a social community larger than oneself can provide a reassuring context when a person is feeling particularly lost or upset. Social interactions may also be too stimulating at times and the best caregivers are aware of times that being alone is what is needed for a person to recoup his or her sense of self.” The Journal on Active Aging® interviewed three experts who take a person-centered approach to dementia care and are helping organizations make such care a reality. Their programs train staff to move beyond structured programming to include meaningful interactions—informed by deep knowledge of the individuals they work with—that take place in the moment, often in a minute or less, during unstructured time. The experts agree that doing so requires a commitment from management as well as staff, awareness of the kinds of interactions that engage each individual, and the wherewithal to initiate or participate in such interactions. (For pointers about how to incorporate this support in your organization, see the sidebar “Five steps to engaging individuals with dementia during unstructured time” on page 34.) The three approaches described here are among those that have been shown to successfully engage individuals with dementia during “in between” times, thereby contributing to their overall wellness and quality of life. These experiences also enable staff to feel that their work is more meaningful. Best Friends Approach The Best Friends™ Approach to Alzheimer’s Care was created by Virginia Bell, MSW, and David Troxel, MPH, to better the lives of people with Alzheimer’s “by equipping family care partners and 28

professional caregivers with ‘the knack’ of providing good care with ease,” according to the program’s website. Bell and Troxel developed Best Friends in the 1990s while working at the University of Kentucky Alzheimer’s Disease Research Center. They based this approach on their experiences with people with dementia, family members and adult day care centers. Troxel, who currently lives in Sacramento, California, works worldwide as a dementia care consultant and speaker, and has presented educational seminars with colleagues at three International Council on Active Aging® (ICAA) annual conferences. Key concepts “Simply put, our philosophy suggests that what a person with dementia needs most of all is a ‘Best Friend’ who empathizes with their situation, remains loving and positive, and is dedicated to helping the person feel safe, secure and valued,” says Troxel. “‘Best Friends’ have ‘knack’—an old-fashioned word that means ‘the art of doing difficult things with ease or clever tricks and strategies.’” People with knack are motivated by a genuine desire to connect with people with dementia and improve their lives, Troxel emphasizes. “Staff who have such qualities can be trained to express their altruistic feelings in ways that help create a therapeutic environment, giving individuals with dementia richness in their lives, music, the arts, exercise, engagement—all the elements that contribute to quality of life.” (Information on hiring staff with “knack” is available from the Best Friends website. For details, refer to “Resources” on page 30.) Implications for working with older adults With respect to living and working with people with dementia, “staff and families need to remember that sometimes the smallest things that take only a minute—giving a compliment, for example—can have a great impact,” Troxel

The Journal on Active Aging November/December 2014

states. “It may sound corny, but if you have 20 staff members who each spend a minute or two here, a minute or two there, it adds up to a lot of one-to-one time.” Troxel mentions that, initially, staff often say they don’t have time to do anything more than they’re already doing. “My response is that if you take just 30 seconds to be a little less task-oriented and a little more person-centered, you’ll actually save time in the end,” he says, because the shower will go better, or helping someone dress will go better or you’ll turn a ‘no’ into a ‘yes.’ Time and again, staff end up saying, ‘Gosh, I didn’t get slapped in the shower today,’ ‘Wow, I got a smile back’ or ‘Amazingly, she came to the activity.’ So I’m a big fan of teaching staff how to celebrate what I call ‘moments of serendipity.’” Specific strategies Rather than using “elaborate assessment tools” to try to ascertain what strategies might work for specific individuals, staff should learn to use people’s life stories to engage them, Troxel advocates. “Most providers are aware of the importance of taking a good social history when someone is admitted into a community, but that history often gets stuck in the charts, never to be seen again,” he observes. “Staff should be encouraged to draw from that information, as well as information from family and friends, to make the most of those serendipitous moments.” Staff should strive to know 100 things about each person they care for, Troxel urges—although he acknowledges that “sometimes knowing even one thing can be huge.” Before Troxel’s mother passed away, she was in a memory care community for three years. “My mother was Canadian and loved to drink Earl Grey tea with milk, which was a longstanding ritual for her. Having a caregiver who Continued on page 30

Person-centered approaches to connect with people with dementia in the moment Continued from page 28 knew that, and offered it to her, made her feel safe, secure and valued,” he shares.

“These are all things that are often spontaneous and unstructured and will add quality to life,” he says.

Another strategy Troxel suggests is to create a “top 10” list for each individual, “so you know, for example, that a person was born in New York and loved the New York Yankees and hot dogs, or if someone is a cat or dog person.” Also effective are strategies such as:

Also look for opportunities to engage one-on-one during group activities. “It’s better to play bingo than to do nothing,” Troxel continues. “But it would be better still to play bingo with engagement, capturing the moments between games to do things like talk about someone’s outfit, discuss the weather, note the hummingbirds outside the window, or talk about a memory—for example, ‘Do you remember the first time you ever played bingo?’” (View “Resources” on this page for a link to a handout with additional engagement strategies posted on the Best Friends website.)

• giving a sincere compliment (“Dorothy, you look so pretty in your pink sweater today”) • asking for an opinion (“Do you think my tie matches my shirt? Or could I do a bit better?”) • providing invited touch, such as a hand massage or a firm handshake • going for short walks • wrapping a present together • freshening a flower arrangement

In independent living, Troxel adds, “bingo games have a beginning, middle and end, and you have to do everything

right and stay on time, but in dementia care you can be a bit more fluid.” For people with dementia, it’s probably not so important that every game be finished. That said, “we need to remember, no matter who is playing, that everyone likes the prizes.” Keep in Mind Keep in Mind®, Inc., takes a holistic approach to dementia care. The company was founded in 2011 by Ellen Belk, president and CEO, whose previous experience included memory-care management positions at national senior living providers Atria and Brookdale. Belk created a dementia operations manual to assist providers without experts on staff, providing ongoing consulting to help clients implement/maintain the operational plan and train staff. At the Continued on page 32


Internet Amazing Place Best Friends Approach to Alzheimer’s Care Best Friends Approach: Thirty [More] Things To Do In 30 Seconds Or Less Downloads/Thirty%20Things.pdf Best Friends Approach: Tips for Hiring Staff with Knack Downloads/Staff_Knack.pdf CCAL-Advancing PersonCentered Living 30

Dementia Care: The Quality Chasm DementiaCareTheQualityChasm_ 020413.pdf

Total Brain Health

Heritage Community of Kalamazoo

Belk, E. Memory Magz®, Happy Faces and Outdoor Beauty editions. [Magazine-style photographic engagement books with coated heavyweight pages]. Available at http://keepinmind

Keep in Mind, Inc. Person-Centered Care for People with Dementia: a Theoretical and Conceptual Framework The Summit at Sunland Springs

The Journal on Active Aging November/December 2014


Green, C. R., & Beloff, J. (2008). Through the Seasons: An Activity Book for Memory-Challenged Adults and Caregivers. Baltimore, MD: Johns Hopkins University Press. Available at

Person-centered approaches to connect with people with dementia in the moment Continued from page 30 2014 ICAA Conference in November, she presented a session, “Holistic Dementia Care Solutions,” and led an Idea Exchange roundtable on working with individuals with mild dementia. Key concepts Keep in Mind’s holistic philosophy incorporates the following “four pillars of support”: 1. Environmental includes “tweaking” lighting, ambient noise and furniture placement to “minimize clutter” and “maximize safety.” 2. Communication includes “tactics that validate and nurture those in your care.” 3. Nutritional includes “utilizing nutrient-dense foods in all meals and snacks.” 4. Engaging activity includes “utilizing creative ways to ‘engage’ those with a dementia diagnosis”—for example, by “incorporating simple exercises, artistic opportunities or musical moments.” Although “engaging activity” is critical, Belk stresses that it also is important not to overstructure the individual’s day. “There’s a misconception in the industry that we’re failing people if we don’t have every minute orchestrated—particularly when people are touring a community,” she says. “If an organization has decided to schedule downtime between 3:30 and 4:30 p.m. because that’s what’s best for residents, staff need to feel comfortable saying, ‘This downtime is part of the journey,’ if a tour comes in at 3:45.” On the other hand, “it’s also important to provide additional cognitive or social stimulation for individuals who may not be as advanced on their journey and so are able to maintain a higher level of engagement throughout the day,” Belk emphasizes. “The whole idea of personcentered care is that to meet the needs of those in your care, you need to know which ones might need a little more 32

stimulation throughout the day and which don’t.” Implications for working with older adults The most important implication for staff working in memory care is to make every individual’s chart a working document that everyone consults and adds to, Belk states. Like Troxel, she notes that most charts end up being filed, “never to be seen again by any person who walks the halls of that setting.” In addition, she has found that many charts are no more than a single page containing a person’s name and birth date, where the individual went to school, and the five people closest to him or her—“in other words, the personal information typically captured during the admission process.” But Belk maintains that in a long-term care setting, information on each individual should be much more detailed. She suggests creating a secondary binder that is accessible to, and used by, all staff. “I contend that everyone from the business manager to the new hires who join the care staff should refer to the binder and share relevant information with each other and with families. The binder should contain a personal history, a documentation of preferences, and the person’s photo.” Belk urges staff to add photos to the binder as events occur and to share these images with families—“I challenge staff to send photos of mom engaged in a pumpkin-carving contest or an intergenerational reading program, for instance.” She adds, “We should not contact families only in times of crisis. Let the families feel comfortable about what’s happening when their eyes are not on us.” Staff also should document changes in status in the binder. Belk suggests that the activity director be “creator and keeper of the binders.” The activity director and director of nursing, who should be in “lock step,” according to Belk, “need to empower their people

The Journal on Active Aging November/December 2014

to stop for a minute at the end of their shifts and make sure any changes are documented.” Specific strategies For people with dementia, Belk is a “big proponent of chore-like activity”—meaning “purposeful things that aren’t mindless. It’s great if they are able to fold their own laundry, for example. However, if it’s not possible to do that operationally” (say, staff fold laundry on the late shift), “then individuals can fold washcloths, dish towels or baby socks that the programming department keeps on hand for that purpose.” Women who folded laundry for many years find it comforting to do so again, Belk observes. Also, because baby socks tend to have vibrant colors, they are visually stimulating. “Most often, the women who are folding such items embark on conversations for a few minutes or so, or share a reminiscence. It is also a purposeful chore,” she adds. “And although there aren’t many babies around, folding baby socks, or washcloths or other laundry items is an adult activity, unlike coloring in a child’s coloring book.” Belk also believes that it is never too late to engage anyone. “When I know a person well, I still am able to impact that person through a gentle prayer, conversation, acknowledgement, hug or touch even in the waning stages of life,” she states. “So we should never neglect to do things because we believe a person is too far gone. Until that last breath is taken, there are always opportunities for people to engage.” Through the Seasons Through the Seasons was developed by Cynthia Green, PhD, founder and president of Memory Arts, LLC, in Montclair, New Jersey, with colleague Joan Beloff. Johns Hopkins University Press then published the program as a book. “Through the Seasons looks specifically at how to take and use unstructured time to engage individuals with memory

challenges,” says Green, who has provided memory improvement and brain health programs in the United States since 2000. At the 2014 ICAA Conference, she delivered two sessions on brain health topics, including “Creating BrainHealthy Communities: Envisioning and Implementing Brain-Fitness Strategies”; and presented on the intellectual wellness dimension as part of “Think 2.0,” the first-ever ICAA General Session. Green also presented an ICAA webinar earlier in 2014 on brain health fairs. Key concepts Through the Seasons starts with the premise that staff will “meet people with dementia where they are, rather than bringing preconceived notions about their abilities,” states Green. “From there, we look for ways to engage the

person that take advantage of multiple modes of communication.” Often, staff or family members on a visit will immediately use unstructured time to try to start a conversation, Green observes. “But conversation may be very difficult for the person, even if they’re in the earlier stages of cognitive change.” Therefore, Through the Seasons is set up like a picture book, with suggested modes of engagement next to each picture. “Although I agree everyone needs downtime, including people with dementia, families in particular often feel like they should be engaging during a visit. This program can help them do that.” Implications for working with older adults Green used the Through the Seasons approach when she was in private prac-

tice in the community; however, staff in memory care settings and family members who visit also use it, she says. Often, the book serves as a starting point for engagement. From there, staff and families can take the concept of engaging the memory-challenged individual in multiple ways around activities that were previously enjoyed together, and tailor it to the individual’s history and current status. (Read “Specific strategies” below for suggestions, as well as point four— the apple example—in the sidebar on page 34.) Specific strategies As Troxel and Belk also discussed, the first step to a person-centered approach Continued on page 34

The Journal on Active Aging November/December 2014


Person-centered approaches to connect with people with dementia in the moment Continued from page 33 to engagement is to have families or formal caregivers identify the interests of that individual, according to Green. Then, rather than expecting that the person can maintain a strong level of engagement or focusing on lost skills, “we try to take the interest and modify it so the person can still get pleasure from it.” Many of Green’s former clients were men who had high-powered corporate positions and participated in few leisure activities other than golf—which they may have also played for business reasons,

she notes. Families often complained to her that they didn’t know what else the individual could do, as “the only thing he ever liked to do was play golf and he can’t play anymore.” Green suggested they try the golf application on Nintendo’s Wii. Why? “This game gives individuals the opportunity to be physically engaged, and they can do it seated, if the person has balance issues. While there might be some technical challenges if an individual were to try to use the Wii independently,” she acknowledges, “it’s something they can easily engage in with a caregiver or family members across the

generations.” Following the same theme, caregivers might also get coffee table books or movies about golf. Doing so means caregivers “are meeting these individuals where they are, rather than trying to bring them to activities in which they have never had any interest. Caregivers are also taking that interest and making it something individuals can engage in right now, based on their strengths and the challenges they’re facing.” Another example is gardening. “Some individuals may no longer have the executive skills to plan a garden or un-

Five steps to engaging individuals with dementia during unstructured time What does it take to infuse engagement in unstructured moments into an organization’s culture? Our interviewees and people involved in implementing these person-centered programs in their own organizations offer the following steps: 1. Get management buy-in. Support from the CEO is critical, according to Barb Fish, senior wellness manager at Heritage Community of Kalamazoo, Michigan. For more than 10 years, Fish has helped to engage Heritage employees in the Best Friends™ Approach created by Virginia Bell and David Troxel. She notes that the community’s current CEO, Jay Prince, came on board after the program launched, but has provided consistent support, which has been key to its implementation. Says Prince, “Best Friends has been a pillar in the community’s mission to celebrate the whole person in every season of aging.” 2. Provide staff training. When Heritage committed to making the Best Friends philosophy an “integral part of our education and development,” the community sent selected staff


to a training program in California, states Barb Fish. Upon returning, a master trainer and employee associate trainers from each of the organization’s six care communities volunteered to teach monthly daylong workshops to the rest of the staff, she reveals, “to ensure all of our 420 employees, and our volunteers, learned how to have ‘knack.’” 3. Ensure full participation. The Summit at Sunland Springs in Mesa, Arizona, recently launched its “In the Moment” memory care services using an operational manual developed by Keep in Mind’s Ellen Belk and supported by her ongoing consulting. “As we continue to roll out the program in our community, it has been important for us to have not only monthly trainings, but weekly reminders as well,” comments Executive Director Craig Ahlstrom, Jr. “Consistent effort over time is how a new idea takes hold. A new habit doesn’t come quickly; it takes consistent training and learning by the managers, which is then passed down to the staff in the community.” 4. Encourage creative thinking. When implementing Cynthia Green’s

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Through the Seasons approach at Amazing Place in Houston, Texas, Executive Director Tracey Brown and her program staff found that making specific topics come alive through a variety of media was the key to participation. While helping memory care residents to reminisce about apples, for example, the program manager brought several different types of apples for individuals to view, slice and taste; led residents in singing Don’t Sit Under the Apple Tree; and invited everyone to drink warm apple cider at the end. “It was a great way to keep the discussion going and also a great sensory activity,” the program director wrote. 5. Allow downtime. All of the interviewees agree that while it is important to be prepared to use unstructured time in meaningful ways, it is also important to give individuals with dementia “downtime,” during which they can feel calm and centered. All three programs include passive activities such as listening to music, and they encourage staff to be sensitive to times when such activities could be beneficial.

derstand the different seasons,” comments Green, “but there are other ways to involve them in gardening. Examples include visiting a local garden; giving them the tactile sensations that come with being out in nature; looking at gardening books; and planting in small pots to provide the sensation of working with dirt and seeds.” Green points to one of many examples in her book. One page has a picture of trees in the snow, along with the statement, “I like to watch the snow fall.” The page opposite the picture offers activity suggestions in two columns, “Let’s talk about…” and “Let’s try….” Under the first heading are questions such as: “Did you ever build a snowman?” “ Did you like to go sledding?” and “Do you like to eat hot soup on a snowy day?” Under the latter heading are activities such as shaking snow globes to watch the snow fall, cutting out paper snowflakes from a doily, making a scrapbook using pictures of winter scenes and clothing, and making a pot of soup and eating together. Concludes Green: “This approach is about looking at other modalities of communication that are not as verbally mediated, and that don’t require independence, but are still building on something the individual previously loved and enjoyed.” Engage individuals with dementia meaningfully to enhance wellness The authors of Dementia Care: The Quality Chasm observe: “The current orientation of healthcare providers and practitioners to viewing a person living with dementia as ‘a diseasecondition’ overlooks the totality of their multifaceted personhood. This flawed orientation not only influences but often negatively impacts healthcare providers’

and practitioners’ attitudes toward and interactions with (or lack thereof ) the person, and limits options for treatments in humanistic ways that engage and enhance meaningful living.”1 Colin Milner, ICAA’s founder and CEO, comments: “The seven dimensions of wellness model promoted by ICAA and adopted by many member organizations overturns this ‘medical model.’” The multidimensional wellness model “opens the door to innovative, personalized approaches that address the physical, emotional, intellectual, social, vocational, spiritual and environmental dimensions of people with dementia. Organizations can adopt programs such as those described here, and/or experiment on their own with methods that are suitable for their specific settings. What’s important,” Milner emphasizes, “is to increase our understanding of the strategies that best meet the needs of these individuals, and how to effectively implement them, day in and day out, to foster wellness and quality of life.” Marilynn Larkin, MA, is an award-winning medical writer and editor, an ACEcertified personal trainer and group fitness instructor, and originator of PosturAbility, a program that boosts posture and selfesteem. She is also ICAA’s Communications Director and a regular contributor to the Journal on Active Aging®. References 1. Love, K., & Pinkowitz, J. (2013). Person Centered Care for People with Dementia: A Theoretical and Conceptual Framework. Generations, Fall 2013. Retrieved from http://

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2. Dementia Initiative. (2013). Dementia Care: The Quality Chasm. Retrieved from http:// CareTheQualityChasm_020413.pdf.

The Journal on Active Aging November/December 2014