Before “Maggie” developed severe dementia, her gregarious personality had led her to find much joy in her many social activities.
But after the diagnosis, and after her condition worsened to the point that she could no longer live in her own home, her family moved her into an assisted living facility.
The facility was large and unfamiliar to her. Staff tried to pull her into social activities, but she resisted, and as time went along she became increasingly withdrawn and isolated.
What had given her so much joy throughout her life was now inaccessible to her.
Maggie’s family tried to compensate by increasing the time they spent with her, but it seemed to do little if any good. They were losing their mother, even more than they already had.
Consider The Person With Dementia, Not The Disease
G. Allen Power, MD, author of “Dementia Beyond Drugs: Changing the Culture of Care
,” proposes a simple yet, for many providers, radical idea: Stop thinking of dementia patients as people with diseases to be treated, and start thinking of them as people with a terrifying, shifted reality who still have lots left to give if their trust can just be earned.
Negative attitudes toward people with dementia are a big factor in the combative atmosphere that can arise at times between those with the disease and their caregivers, writes Power in his recent award-winning book.
“We look at the person with dementia from a single viewpoint—that of a broken person in need of medication to mitigate the decline,” he writes. “Our standardized tests reduce” the elder to a list of “disordered thinking processes, while we ignore the complex cognitive and emotional qualities that can be retained even in advanced stages” of the disease.
In other words, just because someone has a brain disorder doesn’t mean the person isn’t still experiencing life, a growing number of health professionals say. Their life histories, values and spirituality, and coping styles, for example, remain.
In fact, anecdotal evidence points to people with dementia being more exquisitely attuned to their environment, relationships, and spirituality than those without the disease.
But the challenges of experiencing dementia are overwhelming for the sufferer, and that must be recognized, Power says.
A board-certified internist and geriatrician, Power has been a full-time long term care physician for nearly 20 years and an Eden Mentor at St. John’s Home in Rochester, N.Y., for more than a decade.
Culture Change Critical To Dementia Care Model
During his time at St. John’s, Power has helped shepherd the skilled nursing facility’s journey toward accomplishing the goals set forth by the Eden Alternative. He admits they still have a long way to go—the not-for-profit residence is home to almost 500 patients, two-thirds of whom are on Medicaid, and the facility still has long hallways and central nurses’ stations—but the transformation is taking place. In fact, St. John’s just opened its first two Green Houses to be in the mainstream community.
The years of caring for people with dementia have taught Power many lessons, some painful, some inspiring. Today, changing the way people with dementia are cared for has become something of a mission for him.
“The most important [message] is that we need to change the way we look at people with dementia,” Power tells Provider. “We need to see the whole person, what their strengths are, and not just their disability.”
Critical to making this happen is culture change, because without it, “no matter what philosophy you adopt, the philosophy will die,” he warns. “The system will kill it.”
In his book, Power details a new method of approaching dementia care, which posits that individuals with the disease, rather than merely being victims of a decline into oblivion, are full human beings who have experienced a radical, frightening shift in perception, and their “difficult behaviors” are their attempts to gain their footing, achieve control, cope with stressors, problem-solve, and communicate unmet needs.
Verbal or not, people’s personalities are still in there, and they’re communicating, Power says. Providers are just not understanding them. And because they don’t understand, and because they’re steeped in a medical point of view, they ascribe residents’ “difficult” behaviors to their disease and try to solve it with a pill, he says.
When a resident with dementia begins to express him- or herself in ways that are difficult for staff and other residents to handle, Power says, using antipsychotics should be a last resort, rather than the first thing doctors turn to, as is too often the case. Rather than rely on antipsychotics that mostly just sedate patients with dementia and sink them into a state in which they’re even less able to communicate and are more confused, Power has come up what he calls the experiential model of care.
Nonpharmacological Interventions Key To Model
The essential element in making the experiential model work is transforming the mindset of the residence’s staff from a medical/institutional viewpoint to one that prioritizes building meaningful relationships with each resident and partnering with the resident in each caregiving event and activity of the day.
This requires consistent staffing, the elimination of agency staffing, and incorporating meaningful communication between two people—resident and care partner (a term that implies a two-way street in which residents participate in their own care, rather than the term “caregiver,” which implies all the giving occurs on the provider’s side)—who are getting to know and trust each other.
It’s only when the care partner really understands the resident—including history, current views and preferences, spirituality and values, and what tends to trigger anger or unhappiness—and gains the person’s trust that effective, nonpharmacological interventions
can take place. All people are more likely to open up about what they’re really feeling to a friend than to a stranger.
The model also requires that caregivers learn how to see through the eyes of an individual battling dementia, which takes a great deal of thoughtfulness and learning about both the disease and the individual, because just as no two people are the same, no two experiences of dementia are alike, Power says.
Resident's Life History Provides Major Clues
American Medical Directors Association President-Elect Jonathan Evans, MD, agrees with Power’s approach.
Understanding the reasons why someone is behaving in what seems like an unusual or disruptive way makes acceptance easier for staff, Evans says.
“This isn’t premeditated, conscious mischief, this is someone responding to their environment in a way other people don’t want. We need to substitute something meaningful for behavior that might be undesirable.”
Evans recounts the story of a man living in a nursing home who would roll his wheelchair over to other people’s wheelchairs and polish the chair’s chrome, which would distress the person sitting in it. Or he would go around polishing door-knobs in the building.
But because the clinical team knew his life history, they could understand what he was doing and that it wasn’t a threat to anyone. “In his life, he’d had two jobs simultaneously. He worked as a car salesman and in the evening as a volunteer fire fighter,” and both of those jobs involve polishing up the chrome on the cars or the fire engine. “He’d shined chrome objects for so long that it was overlearned behavior. He was just working,” Evans says.
Another example: A nurse who developed Alzheimer’s disease and lived in a nursing facility would push other residents in their wheelchairs, sometimes right onto the elevator, push buttons, and send them down. That sometimes led to fighting.
“So, why would she do that? The environment she was in looked just like her place of work for decades,” Evans says. “The environment was telling her she’s at work. The behavior was really entirely predictable. The challenge for us is how to allow her to be fulfilled, to continue to make a contribution. If the environment is telling her to do something, how can we possibly expect to convince her to do otherwise?”
The facility’s nurses’ hearts went out to their colleague struggling with dementia, and they put a lot of thought into how to involve her in meaningful but safe ways.
“At times if they saw she was causing distress to others, they would call her name and say it was time to make rounds, and they would hand her a clipboard and distract her with some tasks,” says Evans. “Her attention span wasn’t too great, and she would lose interest, but they could do it over and over again by acknowledging her as a nurse rather than trying to convince her that her professional life was over.” Well, Evans notes, telling someone they’re wrong doesn’t even work well with spouses or teenagers, so why would it work better with someone with dementia?
Interpersonal Relationships Work
Most people in long term care like these ideas, Power says, but are worried that having caregivers engage in meaningful conversations with residents as they provide care—or merely as they see them in the common areas—would take up so much time that they wouldn’t be able to fulfill all the regulatory requirements.
“Those are always the concerns,” he tells Provider, but these well-meaning people are viewing the issue from within the constraints of the current, institutional system. “The way you do things now, you don’t have time for this. You need to change how you do things. Most people are very caring; they just need to know how to get there.”
Although Power writes about changing the environment to suit the needs of the person with dementia, he doesn’t primarily mean the physical environment of the facility—in fact, physical renovation is the last step he recommends—but primarily the interpersonal environment.
Consistent Staffing A First Step
The first step toward transformation is consistent staffing. Residents won’t be able to develop meaningful relationships with constantly changing caregivers, Power says. And he recommends entirely eliminating agency staffing, for the same reason.
Secondly, thoroughly educate everyone who interacts with residents—from administrators to housekeeping and maintenance staff—about the basic concepts of learning to see through the eyes of a person with dementia, how to interpret facial expressions and body language, and the kinds of nonpharmacological interventions that might be useful, always tailoring those to each individual resident.
Next, find ways to restore choice and control to both the resident with dementia and those closest to him or her. This helps restore self-determination to individuals with dementia, but it also causes residents, families, and staff to collaborate, which counteracts the us-vs.-them mentality that can develop.
Ways to ensure residents have choice in their lives involve such things as including them in meetings to plan their care (and speaking directly to them, not only to other interdisciplinary care team members), or just something as simple as asking them if they’d like to wear this blouse or that one, or what food on their plate they’d like to eat first.
Rebuilding residents’ sense of usefulness is also critical, because life without any meaning is terrible, Power says. Involve these residents in group decisions that affect others’ lives as well as their own, such as discussions about fun things to do or what they’d like to see on the menu.
Further, Power has seen in his own long years of practice that people with dementia can be exceptionally caring and giving, and allowing them to continue to express these basic needs—to care for and give to someone other than themselves—will go far in helping them to feel useful and give their lives meaning.
“People with dementia can almost always give care on some level,” writes Power, “whether by reading to a child, watering a plant, stroking a cat—even ‘nurturing’ a doll, as people with advanced dementia may do.”
Experts Join Forces To Improve Care
Evans and Power joined many other dementia care experts recently at the National Dementia Initiative (NDI) meeting June 29 in Washington, D.C.
The NDI is a collaborative effort of 70 diverse dementia care experts across the country—experts from the practice, policy, and research sectors who’ve shown longstanding commitment to enhancing knowledge, understanding, and practices to advance quality outcomes, according to Karen Love, founder of CCAL—Advancing Person-Centered Living, who organized the event.
These experts gathered June 29 to form consensus recommendations on dementia care. Their first recommendation was that care be person-centered.
“Within all of us resides the need to be whole,” said Oliver Sachs, MD, summing up the basic humanistic need.
Person-centered care, wrote Love in an e-mail to Provider, reframes the entire conversation.
“Understanding and addressing the wholeness of the person living with dementia changes the need to even have ‘interventions.’ The approach to care becomes inclusive and addresses proactively rather than reactively,” she says.
The NDI is preparing a white paper expected to be finished by mid-October.
A Nurturing Environment
Interestingly, a fairly recent study by the Macklin Intergenerational Institute based in Findlay, Ohio, found that preschoolers who interacted regularly with people with dementia were nearly six months ahead of their peers once they started school in such areas as cooperation, expressing emotions, and social abilities.
A follow-up study found that those children were 11 months ahead of their peers. The study’s authors theorized that this advancement was because the loneliness, boredom, and helplessness suffered by residents were counteracted by preschoolers’ need for interaction, guidance, and exploration—needs people with dementia were able to meet.
A care partner who knows a resident well can inject more meaning into his or her life merely by knowing what topics of conversation he or she will care most deeply about, what gestures of friendship will be touching, or what activities will tap into that resident’s greatest interests.
And, speaking of activities, those that occur spontaneously are more meaningful to a resident than those for which they must wait for the scheduled time to come around.
“These are the attributes of home,” writes Power, “nurturing relationships with people you know well, choice and control over daily life, opportunities to give care, variety, spontaneity, and meaning in everyday life. This is the foundation of the transformed environment, and its impact on the care of people with dementia is enormous.”
Doesn’t That Take Time?
In reality, done right, time is actually saved by developing in-depth, consistent relationships with people with dementia and treating them in ways that feel comfortable to them, says Evans. And not only does it serve the resident, it heightens the job satisfaction of staff, resulting in less turnover.
“I’ve yet to meet a nurse who went into nursing school hoping that if things went well they would spend the majority of their time pushing a med cart,” Evans says. “Or a doctor who wanted to do a lot of paperwork. That’s especially true for people in primary care and people who gravitate toward long term care.
“First of all, we’re all trying to find meaning and fulfillment through our jobs,” he says. “We’re trying to do our life’s work. Particularly CNAs [certified nurse assistants] and nurses and therapists and food service people in long term care—everybody’s there for a reason. There’s something each of us needs from the people who live there,” says Evans.
“We give comfort and receive comfort at the same time.”
It’s a calling for most people, and people are most fulfilled when they are given the tools and time to fulfill their calling, Evans says. “Fundamentally, most people work in long term care because that’s what they feel that they’re called to do; they want to make a difference in the lives of others, and it’s often easy to see that impact in long term care” where the residents have already experienced so much loss, he says.
Rethinking The Job
However, Evans acknowledges that “sometimes the job gets in the way of the work” of spending time caring for people they care about. “The leadership in facilities has an obligation to help all of their staff do things that are maximally important to others.”
But it’s a fallacy, he says, that talking in-depth with residents—not just when they’re admitted but as caregivers wake them up in the morning, sit with them at meal time, or just meet them in the hall—is time that can’t be reimbursed and so is time wasted in terms of the facility’s financial bottom line.
“It’s actually time well spent,” Evans says. “When someone is in distress, that requires attention and it cannot be ignored, but it’s seemingly unpredictable and hard to plan for.” And calming a resident who’s upset certainly takes longer than doing simple things that prevent the disturbance from ever happening.
In addition, when front-line staff deeply understand the people they care for, that empowers them to help this individual whom they’ve grown to care about, which is much more satisfying to the CNA (as well as to the resident) than having a doctor jump in with his magic pill, Evans says. “Being able to identify a situation and solve problems is very satisfying. That’s why a lot of people go into health care in the first place.
“I’m excited about the future because we’re just beginning to understand this condition, and the sky is literally the limit in helping others in need.”
The story of Maggie, the resident with dementia whose case was alluded to at the beginning of this article, has a happy ending.
When Maggie’s family realized she just wasn’t going to get any better on the path the facility was taking, they researched local options for dementia care and settled on English Rose Suites
, an assisted living chain that features family homes in Minneapolis neighborhoods. English Rose, which has spent decades developing its own program of person-centered solutions for people with dementia, worked with both Maggie and her family to write up Maggie’s life story so they would know what things had been pleasurable or comforting to her in the past, and so they could identify things that might trigger feelings of fear, uneasiness, or anger.
Getting to know Maggie intimately resulted in gaining her trust and allaying her fears.
It took a lot of work, and it never stops being hard work; Maggie doesn’t have a perfect day every day. She just has hard days much less frequently, and she has moments of joy now where before everything was psychic pain and confusion.
English Rose caregivers have learned that striving for excellence must become a way of life, not a plateau to achieve and then rest.
Kathleen Lourde is a freelance writer based in Dacoma, Okla.