Lifting the veil
Those who work with dementia patients live for moments where there is mutual understanding and comfort, experts say. Best practices include improving mobility through light exercise and focusing on qu
Talk to enough therapists who've spent time with an Alzheimer's patient, and common narratives bubble to the surface.
Terms such as “empathy,” “patience” and an unquenched thirst to “understand” who's behind the inconsolable tantrums, the illogical speech, the disconnectedness.
You'll also find yourself finally seeing — with all that training and in spite of all the limitations and insurmountable odds of how this dreadful story will end — the giddy gratification arriving from a seemingly trivial breakthrough. That one connection or epiphany, or the tiniest twinkle of an eye that briefly parted the curtain long concealing a life once well-lived.
These are the moments, the small victories that the best memory care therapists live for. The differences they make are too often misunderstood by those outside a close circle of caregivers, relatives and close friends.
Chris Krause, director of rehab for It's Never 2 Late (iN2L), lives for these moments. Recently, he saw a dementia resident who took nearly 30 minutes each day to be coaxed out of a fetal position in bed. Facility personnel ordered physical therapy to help mitigate his repeated falls. Even at the start of therapy, the elderly man quickly became agitated and therapy would shut down.
One day, after learning the man spent the disease-free part of his life as a farmer and tractor mechanic, an iN2L therapist wheeled him up to a large TV screen to look at videos of the tractor models he once rode and repaired. After a few moments of staring at the screen, the man's face lit up.
“He leaned in close, mumbled a few inaudible words and was totally focused on the screen,” recalls Krause. “His therapist then softly suggested he could stand up and get closer.”
Unlike so many times before, the man stood up with conviction and inched closer to the screen. For the next hour, his agitation long dissipated, therapists worked with the man on his standing, balance, endurance, reaching, socialization, activity tolerance and more. For those who agonizingly spent weeks trying to find a connection, it was a celebratory moment.
These are the kinds of challenges caregivers are experiencing every day as they confront a disease that afflicts nearly 7 million people. Sixty-four percent of Medicare beneficiaries in nursing homes and 42% of assisted living residents currently suffer from Alzheimer's or another form of dementia, according to the Alzheimer's Association. Fewer people with dementia now die in hospitals than in nursing homes, where one year's worth of specific treatment could hit $87,600. The topper? The rapidly aging baby boomer generation will soon blow those numbers out of the water.
Dementia and all of its related disorders, from Alzheimer's to Parkinson's to Creutzfeldt-Jakob disease, is now the costliest disease in America — eclipsing cancer and heart disease by a country mile, according to a 2015 study in the Annals of Internal Medicine.
Basics needed first
Unlike many of their peers, memory care therapists have the unenviable distinction of knowing that nothing they do — from textbook to triumphant best practice — will reverse the ravages of dementia. As Ruth Drew, director of Family and Information Services for the Alzheimer's Association, notes, “Some don't even recognize you can die from Alzheimer's. If someone doesn't die directly from it, they likely will die from one of its complications.”
And so, dementia “rehab,” first focuses keenly on the basics like communication, improving mobility through light exercise, and extending the time being able to independently perform the activities of daily living through various techniques.
“When therapists are able to provide early interventions to persons with dementia, as well as education to the caregivers, preservation of functional abilities is likely to be extended,” notes Amy Colella, MS, SLP/CCC, at Preferred Therapy Solutions.
“Instead of assuming a patient is not capable of completing a task or having an opinion, say on a shirt to wear, engage the patient in the task and tailor your approach with appropriate tone of voice, eye contact, environmental modifications et cetera.”
For administrators and high-level managers, a good place to start overall is the Alzheimer's Association website at alz.org, which now includes the association's new Dementia Care Practice Recommendations for Assisted Living Residences and Nursing Homes.
But there are fundamentals worth noting. The most critical place to start is the assessment.
“Therapy can assist with assessments that help establish an individual's cognitive level,” says Tammy Althoff, senior speech-language pathologist at Centrex Rehab. “At that point, caregivers and interaction partners can approach a person with dementia in a more realistic and positive way.”
Felicia Chew, vice president of clinical services and director of occupational therapy for Genesis Rehab Services, believes it's critical to know where the incoming resident is on the dementia timeline. One popular tool is the Global Deterioration Scale, which allows clinicians to identify specific characteristics of functional abilities, limitations and behaviors that can be expected at each stage of the disease process.
To the uninitiated, a dementia resident who mumbles or doesn't speak at all might seem a hopeless case. Yet therapists and providers interviewed were unanimous about one thing: Behavior is communication.
“Often [a] problem behavior is a reaction to a stressor or frustrated attempt to communicate,” says Pat Jadick, a consultant in Ensign Services for Direct Supply. “The most important thing to do first is try and figure out why the person is stressed or what may be triggering the troublesome behavior.”
“Knowing the potential triggers as well as coping mechanisms is helpful,” Colella says. “Keeping the individual with dementia and their identified limitations at the center of all decision-making regarding their care naturally leads to person-centered care.”
Most of the troublesome behaviors of dementia residents can be categorized as biologic or genetic in nature, or the result of an environmental conflict or unmet need, adds Kathleen Weissberg, education director for Select Rehabilitation.
“Remember dial-up in the early days of the Internet? Same thing,” adds Drew. “If this person is getting up and walking away when I'm trying to work with them, what are they saying to me? If we interpret the behavior, like agitation or shutting down as a way of communicating, if we look at the world through that person's eyes, then we do better.”
All this is fine and good, but what about therapy for the 800-pound gorilla in the room — memory?
“The biggest mistakes therapists make is not realizing that as someone ages in their dementia process, they're living in ‘Mayberry RFD' or the ‘Happy Days' era, and if they are there to do activities that are old familiar routines like Aunt Bee does, like housework or sweeping the floor or washing the dishes, then often it alleviates all the behaviors, all the agitation and confusion,” says Linda Riccio, a long-time occupational therapist who now serves as vice president of clinical services for Vertis Therapy. “So many therapy departments only have things and equipment that are new learning tools and so you can't tap into the long-term memory, the rote memory and the elders can't relate to that equipment.”
Knowing the back story
Paul Riccio, vice president of finance and development for Vertis Therapy, quickly looks beyond the long list of letters after an applicant's name.
“I hire therapists for their communication ability, emotional intelligence and critical thinking ability,” he says. “If they have the initials after their name and can't even spell the word ‘clinical' but they have those three things, they'll be fine. If they're missing any one of them, they won't survive. They don't have to be able to talk. They have to be able to communicate. And that is a really important distinction.”
Every Vertis therapist must understand the statistics and the prevalence of dementia, be able to understand how and why behavior is a form of communication and what their patient's cognitive level is. The fourth and most important requirement is knowing their patient's back story.
“Without that, it won't work,” he emphasizes.
“It is important to really know your patients and what their lifestyle was like before dementia,” she says. “This knowledge will help tailor your treatment approaches and make the sessions meaningful.”
Promising therapies to slow the disease progression or improve cognitive ability include multi-sensory approaches (called Snoezelen), bright light therapy and Montessori-based learning, according to Jadick.
Weissberg adds animal-assisted therapy and simulated presence therapy (which uses scripted conversations by family members on audiotape), while another to consider is Habilitation Therapy, according to Michelle Tristani, speech pathology clinical specialist for Kindred Healthcare.
Some caregivers, such as Linked Senior, have piloted efforts to reduce or eliminate antipsychotic medications. (One Virginia facility successfully weaned a 93-year-old senile dementia resident off the drugs while introducing her to her favorite country music and videos of gardening, her former adult pastime.)
But no technique is garnering greater attention or achieving greater acceptance now than person-centered care, which Drew believes “is becoming an accepted mode of caring for everyone, but most especially people with a dementia disease like Alzheimer's.”
In fact, it now has woven itself into the regulatory fabric of the Centers for Medicare & Medicaid Services, says Linda Riccio.
“There's a culture change in which many facilities are de-institutionalizing dementia care,” she says. “They're determining their care strategies about what's meaningful for the resident. And that approach is really getting into the survey regulations and having a big impact.”
It means less emphasis on standardized assessment and “staging,” says Becky Khayum, M.S., CCC-SLP, president and pathologist with MemoryCare Corporation.
“Speech-language pathologists have an important, yet frequently under-utilized role in creating individualized cognitive-communicative plans of care for persons with dementia: creating visual memory aids and graphic cueing systems, recommending environmental modifications, and training caregivers in positive communication strategies, with all strategies aimed at enabling individuals to more easily participate in activities that are meaningful to them,” she explains.
Paul Riccio says mobile technology has facilitated the move toward person-centered care.
“With the requirement of electronic medical records and connectivity, the long-term care industry as a whole is stepping into this now in a big way,” he says. “It used to be if someone had aphasia, they get discharged from the hospital and wouldn't say a word for three weeks. Now, I can put a mobile tablet of familiar images and video in front of that person and exciting things happen. When they touch that screen, they're speaking to me.”
Properly used and documented, the technology can be an integral part of reimbursable therapy care, he adds.
“One thing I always tell my therapists is this: Medicare does not pay for what the patient does. Medicare pays for what the therapist does,” he adds. “If you're working on standing tolerance, range of motion, communication, it doesn't matter if they're stacking blocks or reaching for the picture of the grandkid you taped on the therapy room fridge. It doesn't matter if they're putting away dishes or maybe you pulled up a picture of their house on Google maps and they reacted.
“The number one thing therapists need to do regarding emerging developments, approaches and strategies in regard to people with dementia or aphasia, can be summed up in one word: functional.”
Dementia reimbursement issues will continue to confound providers. Currently, Medicare recovery audit contractors are scrutinizing dementia rehab claims more than ever, according to Linda Riccio.
“In memory care, so many facilities are scared of the documentation reviews and the Medicare Part D caps,” she says. “The caps aren't a rule to stop therapy. They're just used to measure at what point they're going to look at the documentation.
“What I see happening is
people stepping away from dementia care because they don't want their documentation to be reviewed. They don't want to deal with potential denial of payment. But we take the position that all Medicare is asking is for us to be really excellent documenters, to justify what we are doing for our business case in writing, and if someone walks away from that, the patient with dementia loses.”
Similarly, productivity pressures force some providers to avoid any work that's unreimbursed. Much of it can involve a therapist's time getting to know his or her patient, which Paul Riccio believes is a mistake.
“Give me 30 minutes of non-productive time to understand the life story of three to five more people and watch my quality of treatment, my outcomes, my engagement and frankly, my skilled, billable service that achieves an outcome that Medicare likes, go through the roof,” he says.
“So to administrators, I ask, ‘Are you willing to put in a small investment of non-billable hours to achieve a better outcome and provide better quality care?'”
Krause undoubtedly agrees. Remember the farmer in the beginning of this story? “Previous attempts at therapy failed. Thus, there was little if any billable time, no clinical improvement, no reduction in falls, increased risk of breakdown due to progressively diminished mobility, et cetera.,” he says.
“While using the technology to provide stimulation and focus during his treatment, he received nearly an hour of clinically
justified and billable therapeutic intervention. For this former rehab director with many years spent in various operational roles up to the regional level, I'd say assertively, yes, it is clearly
profitable from an operational perspective.”