'Listen with the ears of your heart': caring for people with Alzheimer's disease involves much more than ADLs.

When we opened the Alzheimer's Family Care Center in Chicago 16 years ago, it was the only dementia-specific adult day care center in the city. Our aim at that time was simply to provide respite care, focusing on families' caregiving needs. Over time, however, we realized that people with progressive dementia could be positively engaged in activities, exercise, music, etc., so we expanded our focus to also providing proactive care for people with dementia.

The average Mini Mental score at the Center is 8, which is about the same as in the average nursing home population. We've had clients as young as 37, and currently our oldest is 97; the average age is 78. Over the past 16 years we've served more than 1,200 people who either have had Alzheimer's disease, have suffered minor strokes, or have had Parkinson's disease.

We initially thought we could only provide services to people with mild Alzheimer's, but now we care for clients from the early stages of the disease to the end of their lives. In fact, some people who are in hospice care, dying from Alzheimer's or another illness, continue to come to the Center. Most people we serve here still live at home, but a few, whose families feel they need more activities, reside in nursing or assisted living facilities. The length of stay varies. We have one client who's been coming here five days a week for 11 years.

Beyond ADLs

One man we cared for at the Center used to say, "I need a cane for my brain." What a profound statement that is! People with dementia can't sort out the sequence of things, but if you show them what to do next by providing cues and prompting, they don't have to feel stupid. This involves so much more than merely attending to residents' or clients' physical needs. It entails, first and foremost, caring about them, and it also involves sensitivity and fine-tuned skills of perception. In short, it takes heart. Long-term care workers are the angels of this world. They meet "nutritional" needs that go way beyond food--nourishment for the spirit.

We must never forget that caring for people with Alzheimer's disease and other dementias involves more than what I call "body care." Because of the way long-term care is funded, we are forced to focus on ADLs a great deal. However, the genuine activities of daily living, those we all participate in, include so much more--having friends, making love, walking the dog, washing dishes; in other words, human interaction. Caring for people with Alzheimer's disease goes way beyond feeding and dressing and toileting.

People have a full range of needs: nature, music, exercise, spiritual issues, and so on. These are the things that make life meaningful, that touch us and teach us. It's important that we remember to see each person as an individual human being with a unique nature and character and qualities, and with unique needs and desires. A wide range of activities must be provided to meet those "non-ADL" needs, and we must appreciate each person's uniqueness. For example, some residents respond better when we approach them with humor, and others when we simply provide unsolicited support. It's essential to figure out who needs what.

This is not always easy, but I've seen some real heroism in this regard. I once observed a heavy-set CNA trying to help a man with severe diarrhea. His feces was everywhere. He was calling her fat and stupid. Her response: "I know this is hard for you. Please let me help." She was doing what it takes to give good care--being inattentive to this man's words and attentive to his feelings. She knew that what he meant was not what he was saying. She knew he was feeling embarrassed and uncomfortable. She put his needs first, not her own.

Communication Is Key

Most of what we've learned about dementia over the years, we've learned from the people we care for, by listening to them carefully and by observing their body language. In our adult lives we have much experience with nonverbal communication. We use it with our babies and toddlers, and with our pets. The first step in successful nonverbal communication is caring about t he person with whom you're communicating. Otherwise it's more of a transaction than all interaction.

Nonverbal communication is a two way street that requires sensitivity toward others and awareness of ourselves. Reading residents' body language also requires practice. Often we're so preoccupied with doing something to or for a resident that we miss seeing what the person really wants, like a hug or a kiss. There is a fluidity in the communication between good long-term care staff and residents. If they're concerned with residents' well-being, they're already halfway there.

The body language involved in this nonverbal communication is a complicated dance: One leads for a time and the other follows, and vice versa. It's important to be sensitive to our own body language, as well as the resident's. It can be as obvious as posture--for example, are my arms relaxed and casual or reaching out to give a hug, or are they folded across my chest? Or it can be as subtle as facial expression. For example, is your expression open and accepting or closed and judgmental? We use this every day. Think about it: Whom are you most likely to approach to ask directions? So, those of us who care for people with Alzheimer's and other dementias must ask ourselves, "Is my body language welcoming, inviting, and friendly?"

How we approach someone also communicates a great deal without words. Once I was with my grandmother in the hospital, toward the end of her life. She had just fallen asleep, and a nurse swooped in and abruptly stuck a thermometer in her ear. My grandmother started swinging around, and the nurse said she was "uncooperative and needed medication to calm her down." For crying out loud, she was in a dead sleep and someone poked something in her ear! The point is that we have to be extremely self-aware about how we approach people.

Another factor is the quality of our touch. Is it soft, gentle, and slowly evolving, or is it sudden and controlling and a bit harsh? And what about our timing and pacing? It takes a while to let people with dementia know we're there before we start getting into the "nuts and bolts." If a person is already feeling threatened, how do we approach him so that we don't worsen his interpretation of why we're there? For example, a nurse can't just march up to someone and grab the waistband of his pants to check on the dryness of his undergarments!

Pacing of words is important, too, as are tone of voice and volume. Nor should the importance of the words we choose be overlooked. For example, a staff member might say to her coworker, "I'm taking Mr. Johnson to the shower. He spilled a over himself again." This would call negative attention to a resident. A more sensitive way to express this might be, "Mr. Johnson, you might be more comfortable in a fresh shirt. May I walk with you to your room?"

A Safe Harbor 

Something we should carefully consider when caring for people with Alzheimer's and other dementias is the surroundings. Environment has a huge impact, since almost all people with dementia have trouble filtering sensory input. They simply don't know what to attend to, what to focus on. Everything "goes too fast" for them. For these people, the environment--if it's too loud or too busy or if there's too much traffic coming in and going out of their room--is often a source of frustration and increased anxiety.

One thing a caregiver should do is determine, by careful observation, to what extent busyness shuts a resident down or escalates distressing behavior. Then that caregiver can either figure out how to make the environment calmer and less noisy or remove the resident to a quieter place. Some of this is simply common sense. For example, so often televisions blare when no one is even watching them. It's just unnecessary noise. Or there's too much traffic because staff haven't thought through a way to decrease unnecessary trips in and out. These environmental stressors that can affect residents' behavior adversely can easily be eliminated or diminished with a bit of thought.

Speaking of behaviors, much has been said and written about "problem" behaviors in people with Alzheimer's, such as aggressiveness and wandering. Such behaviors occur because these people feel "lost in space," not anchored. As much as possible, their environment needs to feel safe and secure. And if unwanted behaviors occur, interpreting what's behind them will help caregivers resolve them. We must ask ourselves what residents are seeking. If their hands are always busy, maybe they need an activity to direct and focus that energy. If their legs are busy, maybe they need a different activity. Do they look sad and lonely? Do they seem fearful? What does their behavior symbolize? Gaining the perception to answer these questions involves a lot of trial and error, but if we care and if our goal is to create a zone of comfort, a safe harbor, we will learn.

Again, it's a dance. Sometimes when people are humming, singing, or whistling, we can sense their emotional tone. We have to ask, "What is that person feeling?" Then we can offer help without being asked. Then our actions say, "I care about you for who you are, not for what you can do."

There is a great deal of unconditional love and intimacy in long-term care. Frankly, when you're washing the most private parts of someone's body, the level of engagement is much more intimate than in most other human interaction. One of the joys of such intimacy is getting to know residents' body language well enough to meet their unspoken needs. In many such cases it is not technology or drugs, but your humanity that gives comfort and positive meaning to day-to-day life.

We also have to be able to respond to residents' spoken needs. I once observed a situation in which a new admission said over and over, "I've got to get to Rose Hill Drive." No one in his family or on the staff had a clue where it was or why he wanted to go there. Staff would tell him, "We're looking for it." Nothing was helping until a member of the activities staff made a fake street sign: "Rose Hill Drive." She stapled it to a broom handle and stuck it in the ground next to a park bench in the courtyard. The next time he asked to go to Rose Hill Drive, she took him there. He sat down and wept with joy. In his mind, he had arrived.

That was an effective validation approach. I've also seen "validation techniques" misapplied, to the point where they are almost manipulative and berate residents. If staff overly embellish residents' reality or make fun of residents, this doesn't validate them. In fact, it can be humiliating. For example, a staff person might say to a coworker, "Mrs. Jones can't go to dinner now because she says she's waiting for her mother. Mrs. Jones is 98 years old, so her mother must be 118!"

Validation therapy, like much of what we do, requires common sense to be done properly. Think of people who have mentored or counseled you, such as bosses or friends or teachers. When you had a conversation with one of them, you either felt validated and cared for afterward, or you walked away feeling miserable. It's the same with people who have Alzheimer's and their caregivers. Residents will sense if someone is respecting their reality and is accepting of them, and they'll sense the opposite, as well.

Validation therapy was instituted to counter reality orientation, which said that you had to drag people kicking and screaming to the correct year, day, and hour. What's the point of that? If a nursing home resident says, "I want to go home with Mother," it is not helpful to announce, "Your mother is dead." Instead, we can ask, "What can you tell me about your mother?" It's a valid means of accepting a resident's reality and determining how to provide comfort based on that view.

If a resident insists that it's time to go to work, we can ask him, "What will you do when you get there?" Then we can provide an activity that resembles what going to work means to him, as long as it is not overly complex. We want to connect with people, not correct them. It's a matter of preserving their dignity.

Dignity does not necessarily have to be defined as Emily Post or Miss Manners would define it, either. It is dignity according to the resident or client's perception. Here's an example: One day I was visiting a nursing home, and I was walking down the hall with a colleague. We encountered a resident coming toward us who was wearing nothing but a T-shirt. Instead of scolding or shaming him, the staff member said to him, as if his standing there nude was as normal as could be, "I'd like you to meet my friend from Chicago." She told me what a great dancer he was. She never made reference to his nudity, but then she said to him, "You know, I think I left my book in your room when I was there yesterday. Would you mind if I walked there with you?" This sensitive staff approach supported his dignity because it focused on him and not on a vague societal definition of dignity.

Medical Considerations

Of course, there are clinical factors involved in caring for people with dementia. These particularly come into play in terms of treatment and interpreting behaviors.

Regarding treatment, as long as I've been involved in Alzheimer's care, when it comes to drugs for the treatment of the disease, it's been a "miracle a month." In reality, however, the outcomes of drug therapy vary widely. Some professionals in the field suggest that too much money is spent on finding a cure and too little on finding ways to improve care and have sufficient staffing to effectively implement person-centered care. Some of my colleagues swear by the drugs used in the treatment of Alzheimer's and others swear against them. Indeed, drugs are only one aspect of care for persons with Alzheimer's disease.

The problem with determining outcomes with drug therapy for Alzheimer's disease is that how we diagnose the disease is extremely inconsistent. Some people reach a diagnosis without a comprehensive evaluation or an MRI or a neuropsychological examination or complete lab work or a complete, thorough patient history. Then drugs are given to people without genuinely knowing whether they even have the disease. That is a concern, and because autopsies usually aren't performed after these patients' deaths, we aren't even sure after the fact if that's what they had.

Another issue in weighing the value of drug therapy is that there are many other variables in the lives of people with dementia besides receiving a drug. Their outcomes also depend heavily on their personalities, the quality and amount of care they receive, and the skill of their caregivers. It's difficult to apportion to the drug any improvement or lack thereof.

Another confounding factor is that the natural course of dementia is quite variable. Some people have major language difficulties, while others have difficulty dressing or have coordination problems. Add the fact that the progression of the disease is unpredictable and that we have about seven or eight ways of defining its stages, and it becomes obvious how difficult it is to examine outcomes in these individuals. Some things that we blame on the disease may be the result of inadequate or unskilled care.

I think the bottom line regarding drug therapy for Alzheimer's disease is that some drugs bring about some improvements in some people. But something else to consider is the potential for side effects, because in this population, having nausea, vomiting, or diarrhea is no small thing. Also, all these drugs are administered orally, which is problematic for people who can't swallow pills. Finally, many residents are already receiving multiple drugs every day. Some can't afford more drugs, and some can't tolerate more. These are all things to take into account when considering drug therapy.

In addition to medication treatment, another important clinical consideration is monitoring residents' overall health because of the effect various conditions can have on cognition and behavior in this population. Persons with dementia often can't verbalize, or even identify, what's bothering them physically. Nursing staff need to carefully assess residents for signs and symptoms of dehydration, urinary tract infections, poor nutrition, and other not-so-obvious occurrences such as "quiet" pneumonia, which isn't accompanied by a cough or lever.

Changes in behavior (e.g., withdrawal or aggression) may indicate new or recurrent sources of pain or discomfort. The resident may have an undiagnosed dental or foot problem or may be constipated or have hemorrhoids or might be experiencing an arthritis flare-up.

Dehydration can occur so easily in the frail elderly, and the cause isn't always obvious. Even if staff are conscientious about doing water passes, sometimes a resident's water gets spilled and no one notices, or sometimes residents become dehydrated because of diarrhea. Also, people with dementia, as well as many older people in general, often don't eat well at their main meals, so it's important to provide them with snacks.

Early identification of urinary tract infections is also important. Most people with dementia don't recognize or can't describe a burning or itching sensation that would indicate an infection, so their patterns of urination need to be monitored. If a resident is agitated or exhibiting other behaviors that are unusual for her, perhaps a culture is needed to check for a UTI.

The Rewards

Much is said about the challenges of providing care for people with dementia, but I believe too little is said about the satisfaction, gratification, and joy it brings.

Without a doubt, not everyone is built for this kind of work. Long-term care isn't rocket science--it's harder. Because there are so many variables involved, those who need precise answers and exact ways of always doing the same things need not apply. And those variables don't necessarily act the same way twice. We're dealing with humans, which requires that we draw not only from the scientific and professional side of ourselves, but also from the artistic side--our intuition and creativity. And for doing that, there are many rewards.

Helen Keller said, "The world is full of suffering, but it is also full of the overcoming of it." When you hear someone who has been folded up in a chair, unresponsive, suddenly laugh at a joke, that's a reward. If one resident gets up and walks across the room to help another, that's a reward. We see people who were afraid to walk, walking--or singing, or picking up a paintbrush. We see the enormous courage that so many people show in adversity, living with a disease that makes it so difficult to be independent. And then we who work in long-term care are often privileged to receive these gifts of courage that we see each day.

There are few home runs, but there are lots and lots of bunts and singles. You get a squeeze of your hand, or a wink or a hug that lets you know you're connected, that there's rapport, a relationship, and that you've made a difference in a person's life and aren't just part of the passing scenery. There is such value to helping people through the journey of life. We need to take pride that we are being what humans ought to be to each other: accepting and just and kind and helpful.

It is so important to uphold those qualities in each other and not let the system get us down. I'm afraid in our society we've gotten far from the notion that healthcare is caring about a person, about looking at the whole person--nurturing what's left rather than just looking at what's lost. We're in a society that values youth and newness and speed, but we must remember that we need to work more slowly and carefully with those who are old and fragile.

I once asked Sue, a wise and lovely 76-year-old lady with dementia, how to help when people are "forgetful." She replied, "Listen with the ears of your heart." Doing that is what enables us to surpass people's physical needs and reach beyond, into the needs of their spirits. In approaching care in this way, we can enable people with Alzheimer's not only to survive but to thrive.

Dorothy Seman, RN, MS, HHA, is clinical coordinator for the Alzheimer's Family Care Center; internal dementia consultant for the VA Chicago Healthcare System, Home-Based Primary Care program (HBPC); and adjunct clinical faculty, University of Illinois, College of Nursing, Chicago. For more information, phone (773) :)02-4130, fax [phone], or e-mail [e-mail]. To comment on this article, please send e-mail to [e-mail].