Feature Improving the Lives of People with Dementia It's time to replace unfounded fears with evidence-based facts. Doing so will best ensure optimal treatment of an underserved population and will better meet caregivers' needs. By Eric Ries | March 2018 Lise McCarthy, PT, DPT, understands that the idea of physical therapists (PTs) treating people with Alzheimer's disease and other dementias can seem counterintuitive. This is a patient population, after all, that has experienced memory loss and struggles with other cognitive issues that make problematic such staples of physical therapy as patient education, compliance with instruction, and adherence to a plan of care. But McCarthy, who chairs the Academy of Geriatric Physical Therapy's Cognitive and Mental Health Special Interest Group (SIG), cautions her peers against making easy assumptions and succumbing to "therapeutic nihilism"—the belief that there's little PTs and PTAs [physical therapist assistants] can do to enhance the mobility of people with dementia, improve their quality of life, and slow their cognitive decline. "The number-one societal challenge that this population faces is discrimination based on ignorance," says McCarthy, a board-certified clinical specialist in geriatric physical therapy whose San Francisco-based home health practice serves a clientele that is almost exclusively people 80 or older who have Part B Medicare insurance. "When a lot of people—even those within health care fields—hear the word 'dementia,' it seems as if their mind shuts down," she observes. "It's because many people don't know how to effectively communicate with this patient population." Minds also close, ventures Nicole Dawson, PT, PhD, because dementia frightens people. "There's something about dementia that scares many of us so much that we don't, then, dive in and treat people who are experiencing it the way we'd treat patients with any other symptomology," says Dawson, a board-certified clinical specialist in geriatric physical therapy who's an assistant professor of physical therapy at the University of Central Florida in Orlando and an academic liaison to the Cognitive and Mental Health SIG. Julie Ries, PT, PhD, addressed the dangers of therapeutic nihilism toward older adults with dementia—a demographic that last year included an estimated 5.5 million Americans with Alzheimer's disease,1 the most common form of the cognitive disorder—in an address at APTA's 2017 Combined Sections Meeting that she tellingly titled, "Rehabilitation for Individuals With Dementia: Let's Elevate Our Expectations." "If a PT goes in with the attitude that physical therapy's probably not going to be effective for people within this population, that's likely to become a self-fulfilling prophesy," notes Ries, a professor of physical therapy at Marymount University in Arlington, Virginia (and no relation to the author of this article). Such thinking concerns McCarthy, who founded the SIG in 2014 as an educational resource and gathering place for PTs and PTAs who want to know more about the myriad reasons that "physical therapy for people with dementia" is hardly an oxymoron. "There's a growing body of evidence about assessment and care-management strategies that PTs and PTAs can tap," she says, "to help them feel more comfortable and effective serving these individuals." PTs and PTAs "think that cognitive symptomology is nebulous compared with physical symptomology, but it's really not," Dawson agrees. "There's great literature about the neuropathology of dementia and why it causes certain symptoms. We in the physical therapy profession must familiarize ourselves with best practices for overcoming barriers to treating these patients, then address their needs just as we would those of any other person." At the first annual North America Dementia Conference in Atlanta last June, Jan Bays, PT, co-presented a program titled "Living With Dementia: PT, OT, & ST Roles in Optimizing Well-Being." The program examined and debunked 3 "myths" that individuals in the therapy professions—physical therapy, occupational therapy, and speech-language pathology—may hold about engaging with this patient population. In her presentation, Bays began by refuting the first 2 myths, saying that, in fact, people with dementia are good candidates for therapy and that Medicare does cover skilled therapy services for this population. Bays is the director of program development and education at Jill's House, a residential facility in Bloomington, Indiana, that offers older adults with and without dementia an individualized and interactive living environment. The third myth, Bays told an audience that included people with dementia and their caregivers, is that all therapists are the same in terms of their ability to meaningfully address this population's needs. "Unfortunately," one of her slides read, "this is not the case. To get maximum benefit from therapy, you must seek out therapists who are knowledgeable and capable in dementia management." (The conference was sponsored by the Dementia Action Alliance, with which the Cognitive and Mental Health SIG is developing relationships. The nonprofit describes itself as "a national advocacy and education organization of people living with dementia, care partners, friends, and dementia specialists committed to creating a better country in which to live with dementia.") As a public liaison to the SIG, Bays scours the Internet for the latest studies and research, posting the links and sharing them with discussion-forum participants. But McCarthy suggests that even before digging into the literature, the best and most important step her peers can take is to "keep your clinical cap on and look at people with dementia in an observational, emotionally detached way." "We don't have a problem thinking about how physical therapy can be successful with people with brain injury from trauma, stroke, or other brain conditions such as cerebral palsy or multiple sclerosis," McCarthy notes. "The template PTs use to treat individuals with those conditions should be the same one we use for people with dementia. There's a protocol we're trained to follow as clinicians. We go through an examination process, make inquiries, obtain the patient's history, identify assessment tools that help us take measurements and gather subjective and objective data, analyze and make judgments about the data, identify goals, and determine steps to take in order to reach those goals. We tease out the things we can treat from those we cannot treat, and we make referrals to other care team members as indicated," McCarthy says. "However, a significant shift in thinking is needed for clinicians to work effectively with people who are affected by dementia. The communication techniques are different. Also, the assessment and screening tools used to identify needs and set goals differ from those used with other populations." "Assessment should identify, through the use of properly administered screening tools," McCarthy elaborates, "the health literacy needs of the care team—patients, caregivers, and licensed health care professionals—and how they can best speak the same language." Two assessment tools she uses with all of her patients on the dementia spectrum, she says, are Pain Assessment in Advanced Dementia (PAINAD) and the Functional Assessment Staging Tool (FAST). Both are described in detail, with accompanying case studies, under "A Club Documents" (the "A" stands for assessment) on the Cognitive and Mental Health SIG's website, McCarthy notes, and also are listed among tests and measures at PTNow.org. "Treatment interventions should target identified needs to optimize the entire care team's health and reduce everyone's health risks," McCarthy says. "People impacted by dementia—both patients and caregivers—have changing needs for licensed/skilled and unlicensed/unskilled services over time. Their needs may span 5 health domains—behavioral, cognitive, mental, physical, and functional—so care managers should consider all 5, per the results of an international consensus study."2 "For example," McCarthy notes, "people on the dementia spectrum who refuse to move (behavioral domain) and have non-amnesic (non-Alzheimer's) dementia (cognitive), fear of falling (mental), postural collapse (physical), and difficulty walking (functional), may require different physical therapy care management interventions than do people who are chronic walkers/rockers (behavioral) with amnesic-type (Alzheimer's) dementia (cognitive), depression (mental), pain (physical) and difficulty walking (functional)." "In addition," McCarthy emphasizes, "assessment and treatment of common age-related conditions—such as impaired vision and hearing, degenerative joint disease, dehydration, and polypharmacy—must be conducted." Once a PT takes the necessary steps and uses the proper tools, Dawson says, "there's absolutely no stage of dementia at which we can't intervene and see results. What our interventions look like is going to vary, depending on where that individual is in the disease process and how much remaining strength he or she has," she observes. "Our response will be on a gradient, just as it would be with any other progressive illness." Ries points to systematic reviews and meta-analyses that support the effectiveness of exercise and therapy interventions in individuals with dementia for functional mobility and improvement in activities of daily living.3-8 "We can help improve these individuals' balance and keep them at home and interactive longer," she says. "That's such a powerful thing for them, their caregivers, and the health care system. And the literature is showing not just physical benefits but cognitive ones, as well, in slowing dementia's progression." Studies are showing, McCarthy echoes, that "physical activity can be an effective cognitive therapy for people with brain disease. There's an evolving interconnectedness," she adds, "among 3 fields of study: falls research, brain imaging, and cognitive therapy. These emerging findings"—about which she has written9—"are supportive of physical therapist scope of practice." "Stepping Into Their World" The place for PTs to start, McCarthy says, is to screen every patient 60 or older for cognitive issues. She calls this a critical first step. "When I work with older people, I always screen their cognition, because they may have mild cognitive impairment [MCI] or early characteristics of a dementia that hasn't yet been diagnosed," she says. Screen results can yield a wealth of information, McCarthy adds—helping her better understand the individual's cognitive and functional strengths and weaknesses; identifying brain structures that may be atrophied or impaired, such as amnesic versus non-amnesic MCI; aiding her in drafting a care plan and short- and long-term care goals; helping her identify appropriate health literacy and care-management training to share with the individual's care team; and suggesting resources for which she might advocate to optimize the patient's function and reduce caregiver burden. Sara Knox, PT, DPT, PhD, a frequent presenter on treatment strategies for older adults with dementia, relates, "When I talk to physical therapists about this, it's not typically that they don't know what examination techniques to use or what interventions to implement. The big problem," she says, "is that they don't know how to communicate with these individuals—how to engage them in ways that can help accomplish therapy goals." For that reason, Knox—an assistant professor of physical therapy at the MGH Institute of Health Professions in Boston and a board-certified clinical specialist in geriatric physical therapy—argues that "taking a thorough patient history and getting at what that person is all about is more important than some of your other examination practices are going to be." Christy Ross, PT, DPT, concurs. "Really talk with these individuals, their family members, and their caregivers, to get to know them" she advises. "Observe their daily routine. Ask a lot of questions about the person's past, likes and dislikes, motivations, and how he or she moves and gets things done." Ross is a board-certified clinical specialist in geriatric physical therapy who's employed at the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas and is vice chair of the Cognitive and Mental Health SIG. "If you start there," Ross says, "you'll know better how you best can help the patient. You'll have insight into what that individual can do, and the way in which he or she processes and understands information. With that knowledge, you can develop communication and instructional strategies for optimal success in achieving functional goals." Bays offers 3 illustrations of this from her clinical experiences. "In 1 case, the patient had been referred as a falls risk. Physical therapy was indicated for strengthening, balance, and gait training. This man had been diagnosed with dementia and was not cooperative with treatment. But the physical therapist learned from this man's life history that he'd always been interested in birds," Bays recalls. "So, the therapist incorporated building a birdhouse into the therapy sessions. During that functional activity, which strongly engaged his interest, the therapist could work with him on standing tolerance, balance, gait, transfers, lower extremity strengthening, dual-task management, and safety awareness." In another instance, "an older woman with dementia was having difficulty walking but had no interest in therapeutic exercise," Bays says. "We hit on the idea of projecting, at face level, Google Earth images from the woman's hometown. Excitedly, this formerly disengaged patient stood up for 30 minutes at a stretch, reaching and shifting weight while marveling at the sight of familiar landmarks." The only challenge, Bays notes, was getting the woman to sit down for sit-to-stand strengthening. Even in late-stage dementia, Bays adds, acquiring insight into what motivates patients can pay surprising dividends. "This one gentleman who was in the later stages of dementia was having difficulty transferring," she recalls. "He was resisting care and wouldn't stand for his caregivers. He was at risk of needing a mechanical lift. So we looked into the patient's past to find images that were meaningful to him. He'd been a farmer. When we projected images of tractors before his eyes, he stood up and remained standing, with guarding, for as long as 10 minutes. That gave us an opportunity to impose weight shifting, upper extremity movement, and trunk movement." Dawson, for her part, fondly recalls a woman who, like many older adults with dementia, had been conditioned by rough handling and barked commands to fear caregivers. "But I was wearing a polo shirt and my hair was in a ponytail, so she thought I was a boy," Dawson says, "and she adopted me as her grandson." The PT didn't disabuse her of that belief—although, she says, she would have felt ethically compelled to tell the truth if the patient had directly asked, "Are you my grandson?" Over time, the "familial" connection helped Dawson coax the woman to her feet. "We eventually were able to get her to walk 150 feet with a walker and standby assist," Dawson says. "Her daughter was awestruck! But we knew that this lady had it in her. It was just a matter of honoring her perspective, then working with her to eliminate barriers to movement. Once we got her moving, she was much happier." Dawson calls this approach "stepping into their world"—"as opposed," she says, to "trying constantly to pull people with dementia back into our reality." In technical terms, the former approach is known as "validation," the latter "reorientation." "I ask my students and the PTs who take my continuing ed courses, 'Can you imagine the person you love most in your life dying, and then having somebody make you relive that death over and over?'" Knox says. "Because that's what's happening when we try to reorient people with dementia to reality. They think their spouse is still alive. They think their child is 8 years old and is playing outside. When you tell them that, no, he's standing right there and is 48, they may think, 'My god, I missed 40 years of my child's life!'" Such psychosocial reorientation may increase the stress and anxiety of people with dementia, Knox says, whereas validation—acknowledging their reality—has no such drawbacks and can, in fact, help advance therapy goals. Playing to Patient Strengths Dawson advocates what she calls a "strength-based approach" to physical therapy for people with dementia that exploits surviving cognitive processes rather than seeking to tap those that have deteriorated. "People think dementia is only about loss and decline," she notes, but "procedural and emotional memory continue well into the disease process. Procedural memory involves actions such as knowing how to walk, or get up from a chair, or get out of bed. And then, even if the person doesn't know who you are, his or her emotional memory can signal that you're someone he or she likes and can trust." A central tenet of the strength-based approach, as described in a research report Dawson lead-authored,10 is "identifying [patient] strengths and abilities, rather than deficits and limitations (using familiar and functional activities that rely on procedural and long-term memory as exercises instead of new and unfamiliar fitness equipment)." Dawson and her coauthors documented improvements in lower extremity strength, balance, and gait speed in study participants by employing strength-based techniques. "Always making a good first impression," meanwhile, is key to staying on the good side of this patient population's emotional memory, McCarthy says. "People who have Alzheimer's often can remember, even when the disease is in its more advanced stages, how they feel about a person—even if they can't remember that person's name or perhaps their own name. For that reason," McCarthy continues, "it's important for PTs and PTAs to have a dementia-friendly attitude and make a good impression every time they encounter that individual—using not just words, but also body language and facial expressions, to gently and calmly communicate who they are and what they want the individual to do." When it comes to facial expressions, McCarthy adds, nothing beats a smile. "Smiling uses all the facial muscles and is an expression that's very easy for people to recognize," she notes. "So, when you're communicating with someone with dementia, when it's appropriate to do so and it isn't fake, smile." Another important concept for PTs and PTAs to keep in mind, says the PTs interviewed for this article, is that while a cognitively intact person might benefit from making mistakes during the therapy process and gleaning lessons from them, the best approach for people with dementia conversely may be what's called "errorless learning." "Evidence suggests that those with cognitive impairment benefit from the exact opposite of trial and error—that they best learn by doing things the same way, in the same environment, with the same cues, and are not allowed to make mistakes," says Missy Criss, PT, DPT, an assistant professor of physical therapy at Chatham University in Pittsburgh who is a board-certified clinical specialist in geriatric physical therapy and, like Dawson, is an academic liaison for the Cognitive and Mental Health SIG. "The thought," Criss explains, "is that this approach prevents the encoding of mistakes—people don't learn to do things the wrong way, because we're ensuring that things are done correctly every time. Individuals learn by doing things, rather than by thinking about how they're doing them—the latter is a higher cognitive skill that increasingly is lost as dementia progresses. In errorless learning, the person learns implicitly rather than explicitly." Another tip: Any PT or PTA who's working with an individual with dementia, McCarthy says, should enunciate clearly and speak slowly. It often takes people with cognitive impairment additional time to process information and requests. She notes that having a hearing impairment may further contribute to communication difficulty. "It was a real 'light bulb moment' when I realized I needed to slow my speech down—instead of speaking 3 to 4 words per second, I needed to reduce that to 1 to 2 words per second to give people a chance to process what I was saying," McCarthy recalls. "I'll always give patients who are in the later stages of dementia more time to process cues—often 5 to 15 seconds, and sometimes more, between simple verbal cues. With 1 patient I had to wait 90 seconds before repeating a simple verbal cue to stand up," she adds, "while I expectantly waited for a reaction and occasionally glanced at my watch to keep track. It worked. She stood up, and I was able to help her walk again. After that, her daughter called me 'the dementia whisperer.'" Patience, creativity, and flexibility all are valuable qualities in any PT or PTA who's looking to optimally engage with and help this patient population, say those interviewed for this article. McCarthy further advises "training and self-education. Get a specialist certification in geriatric physical therapy if possible—and if it's not, take advantage of professional development opportunities that focus on dementia," she says. "Also," she advises, "work on sharpening your writing skills, in order to best advocate for provision of skilled therapy services under Medicare." Not only are these various strategies advisable from a practical standpoint, but they also occupy the ethical high ground by respecting the "personhood" of the person whose cognition is impaired, says Mary Ann Wharton, PT, MS. "If you are a good physical therapist, you have to go beyond the technical and scientific aspects of physical therapy and dig into the moral essence of being," says Wharton, an independent physical therapy consultant who's chaired the ethics committee of the Pennsylvania Physical Therapy Association for the past quarter-century. "You need to honor whatever it is that constitutes that individual's personhood. The way you do that with people with dementia is by talking with them, gaining information from caregivers, and doing a lot of observation. What are the things that make that person happy?" "I always say," Wharton notes, "that any clinical decision we make as PTs has an ethical component." It Pays to Explain and Document Regarding payment under Medicare for therapy services to people with dementia, Bays cites the Jimmo v Sebelius court settlement of 2013, which firmly established that coverage for such services depends not on the beneficiary's restoration potential, but on whether skilled care is required and whether the underlying reasonableness and necessity of the services is clear. "Funding is available to PTs for this purpose," Bays emphasizes. "Medicare pays for skilled services, and treating people with cognitive impairments requires considerable skill. But you have to be able to cogently explain what you're doing and why you're doing it," she cautions. "Absolutely," Ries echoes. "As long as you accurately and appropriately document what you're doing to preserve that person's current capabilities for as long as possible, and to slow further deterioration, you're demonstrating that skilled, reimbursable therapy is being provided." McCarthy is encouraged by the "explosion" of research and information in recent years about best practices for treatment of people with dementia. She says that she and others in the SIG are "trying to collect as much information as we can and organize it such a way that the next generation of PTs and PTAs, or current PTs and PTAs who are just beginning to work with this patient population, can more easily access and understand it." She is hopeful that the role of physical therapy will be more strongly supported as more information is shared. "The research being done on PTs' assessment and treatment of people with dementia is sparse," McCarthy says. She believes that situation will change "exponentially" as the benefits of movement and exercise to this patient population become better publicized, spurring additional research funding. Dawson agrees that "we as a rehab profession are underrepresented in the research sphere." She also would like, she says, "to get PTs who are really good at treating this patient population spread out across every geographic area of the country, to serve as resources and mentors." The numbers and reach of such PTs is growing, she says, but not as quickly as she'd like. "I want to see physical therapy as a profession play a bigger and bigger role in serving people with dementia and striving to meet their needs," Dawson says. "We're the experts in exercise and movement science. There's nobody out there who's better than we are to move these efforts forward." Eric Ries is the associate editor of PT in Motion.