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July/August 2009 Issue

Connecting With the Person Inside Alzheimer’s
By Nancy Pearce, MS, MSW
Social Work Today
Vol. 9 No. 4 P. 26

Relax personal mind-sets and break through logjams in interacting with people with Alzheimer's and other dementias. Learn how to live with not having all the answers.

Judy desperately shouted, “I’m here, in ‘ere,” every minute or two during the final hours of sunset. Every day, she sat with others around the nursing station in the late afternoons, but that did not seem to help comfort her, as “I’m here, in ‘ere” continued to pierce through everything else.

Judy, who earlier in the day was laughing and blowing kisses, was now locked inside her devastating illness, calling for someone to figure out how to find her, help her, be with her. For her, as is true for many, feeling isolated and locked out of the possibility of human connection was a predatory nightmare.

We—her care professionals, family, and friends—also felt isolated and locked outside of her illness when we attempted to interact with Judy. As her disease progressed, our opportunities to relate with Judy lessened, as any connected interactions with her became increasingly difficult and sometimes impossible. We grew frustrated by our inability to help Judy feel comforted; we missed her laughter and kisses. Eventually, we began to deem her out of reach and to look at her as the disease rather than the human being who, like the rest of us, needed exactly what we needed.

Just like me, Judy and other persons who have dementia need to feel part of the flow of the intangible gifts of humor, wisdom, and understanding found within the person-to-person connection. These needs can continue even through the end-of-life process. I came to understand that my function as a social worker was not to figure out what actions I could take to help her. It was not about what I did or did not say; it was not about her getting anything from me or anything for her. As Jean Baker Miller, coauthor of The Healing Connection, wrote, “It is about being in the flow of human connection rather than out of it.”

Staying Connected When the Rules Change
Those with dementia helped me learn over the past 25 years that each person maintains the ability to feel the joy and satisfaction of being connected with others throughout the disease’s progression. The disease does, however, alter a person’s ability to maintain connections, which poses challenges for those of us who are not sure how to connect when the rules change. By rules, I mean the familiar or predictable learned behaviors or ways of interacting that are generally accepted as socially appropriate.

We can feel lost when we try to connect with a person who is not playing by the same rules from moment to moment. How do we establish a therapeutic relationship with a person who doesn’t speak with the same familiar sentence structure as we do, who uses the wrong words all the time, or who is in a totally different time frame or reality than we perceive? Is it possible to walk with someone through a therapeutic process when their cognition shifts from one moment to the next and their ability to retain insights does not appear to exist?

A person’s inability to remember the rules and his or her unusual behaviors are a result of a disease process; they are not chosen or deliberate. We cannot expect that a person with dementia will be able to adapt to our standards and rules. Bridging a connection is up to us. We will need to make the adjustments necessary to bridge the gap between ourselves and a person with dementia. But where do we begin?

Getting Out of the Way
Over the past decade, I conducted a series of discussion groups, talking with dozens of social workers who perceived their past interactions with persons who have dementia as failures. They were having problems merely approaching such persons in their care. They wanted to quit or at least have all persons with dementia transferred from their caseloads.

I asked each care professional to come up with one word that encompassed who they were—their strongest characteristic or quality. The following list emerged: caring, dignified, knowledgeable, loving, compassionate, intelligent, competent, and classy. I then asked them to share their examples of interactions with persons with dementia.

I was not surprised that those whose strongest qualities were caring, loving, and compassionate thought themselves to be “bad” or “cold” people after experiencing frustration and irritation when interacting with a person who has dementia. The people whose most valued qualities were knowledge, competence, and intelligence said they felt like “complete idiots” or “foolish” when they said the wrong thing or found themselves tongue-tied with no idea what to say to a person with dementia. Those who listed dignity and class said they felt “foolish” or “ridiculous” when they were clumsy or awkward or didn’t have a clue what they were supposed to be doing. Such interactions challenged who they are—or think they are—as persons of worth.

No matter what your opinion of yourself, you will undoubtedly feel impatient, frustrated, stupid, and foolish along the path of trying to connect with a person who has dementia. That means you feel human! It seems to be a part of our nature to be uncomfortable when entering any foreign territory, especially the very different world of a person with dementia. This person can be in the most unpredictable places and situations from one moment to the next. Yet, the most effective focus of our effort and attention is not on the disease’s manifestations but helping to make connections with the person inside the dementia. I have found that the best way to begin is to get myself and all of my opinions and judgments about myself out of the way to allow some kind of connection to unfold. Interactions with Mavis helped me fine-tune this understanding several years ago.

Mavis’ Story
Mavis was 89 years old and living in an extended care facility when we met. Her vascular dementia was quite progressed, and she was part of our hospice program because of the advanced progression of her cardiac disease. The dignity, charm, and sociability that she had developed during her life were fairly well intact, but her language rarely made sense to those around her. She no longer recognized her children or grandchildren and most certainly didn’t remember who I was from visit to visit.

During each visit with Mavis, she asked me why she was still on this earth. “God should have taken me long ago!” were the only words that she consistently stated very clearly.

I encouraged Mavis to talk about her memories from different times in her life. We often looked at her family album and shared comments about all the people who were frozen in some moment from Mavis’ past. She had no idea who they were, but her reaction to them was usually quite visceral and dramatic, causing her to often throw out candid, partly formed phrases about their lack of fashion sense, their apparent mood, and, more importantly, her feelings of connection or disconnection to them.

The accuracy of the details was not as important as the feelings these visual prompts evoked for Mavis. I wanted to help her search for some type of awareness of what her life had been about—to see if she could find meaning in the time she spent on earth and to discover whether she had other things to accomplish before she was “taken,” as she phrased it.

We began each of seven weekly visits by introducing ourselves again. During each visit, Mavis wondered why she was still on earth, and during each visit, we were able to superficially brush over aspects of her life, with no common themes emerging. I felt there was a deeper level she was capable of reaching, yet we could not seem to get there.

My eighth visit was a little different. It began as always, except on that day, Mavis was thirsty and asked if I could get her some water. I positioned her wheelchair and locked the wheels for safety. As I stood and moved to get her cup, my spandex-blend, elastic waistline skirt came down to my knees! Apparently, I had locked my skirt in Mavis’ wheelchair. In the split second it took to reassemble myself, I searched for dignity-saving self-comforts—Thank goodness no one else saw this. No need for embarrassment, Nancy. Easy to let this one go. As usual, all will soon be forgotten.

My thoughts were thoroughly interrupted when I looked up and saw Mavis bouncing in her chair with a fit of giggles, totally out of control. It was purely infectious, and I started giggling, too. In the next moment, there we were—laughing hysterically, holding our stomachs to support our underexercised laughing muscles. People walked by and gave us looks, but we did not care; we were having a pure and joyous connection in that moment.

In my preparation for our next visit, I was fairly relaxed and thankful again that no one else had witnessed the skirt incident. Of course, the most forgiving aspect of Mavis’ dementia was that she remembered nothing from one visit to the next—neither who I was nor any of my unhelpful statements, fruitless explorations, or fumbled attempts to relate. We could always start fresh.

Many persons with dementia have helped me relax my self-judgments of ineptitude and failure by forgetting those moments about which I judged myself. Since the person let it go, I certainly could, too, freeing myself for our next interaction. So, when next I walked in to visit Mavis, I was not embarrassed because the skirt incident had (virtually) never happened.

Bless Mavis’ wonderful heart and mind, because every time I visited in the months that followed, she began each visit somehow saying or gesturing, “You’re that girl whose skirt came down,” and she would laugh hysterically—and so would I. From the skirt moment on, our visits began with playfulness and joy healing on many levels for both of us. For me, connecting with Mavis demanded from me a deep and heart-felt surrender of my self-judgment, a willingness to develop spontaneity, and the ability to laugh at myself. This was an extraordinary learning experience for me, further expanding my personal and professional growth.

Mavis grew, too. In holding and sharing “our secret,” as she once called it, Mavis opened to a deeper level of intimacy in sharing amidst her mismatched words about her life, dreams, and hopes. I held meetings with Mavis and significant family or caring staff, which always began with the recalling of “our secret” with laughter and progressed to each person reflecting a gift or understanding each received from having spent time with her. Mavis came to understand that her greatest gift to the world throughout her life was, as she phrased it on a particularly clear day, “to help others fly on their own.” Mavis passed away with peace and, her daughter told me, with a smile on her face.

Enter the Person’s World
My interactions with Mavis underscore for me the importance of getting myself—with my opinions and judgments of stupidity, foolishness, and embarrassment—out of the way, so I can fully begin by participating in the joy and intimacy of our connections in each moment. The path for encouraging a person with dementia to participate in life and human interactions lies in entering her world. To do so requires us to bring our attention to the full range of our own human emotions, inner messages, and persistent thoughts that block connections—to relax our personal mind-sets that create logjams in interactions with persons with dementia and learn how to live with not having all the answers. Dare to be free of opinions and judgments.

Initially, this is not an easy path, since the full range of human emotions can surface. Many of us would often rather burn our house down than give up our version of reality. Yet this is what is required in the moments that we are with a person who has dementia … and it is your client who will be your guide.

A person with dementia tends to have very strong antennae and will sense and react to our distancing reactions, confusion, defensive challenging, and judgments, even though we may think we are hiding them. If we pay attention, we will see the signs of our preoccupation in the person’s reactions. It may be obvious or nonverbal in an irritated look, fidgeting, or pushing our hand away. At minimum, a connection simply will not happen in those moments. One person may withdraw so deeply that it becomes difficult for us to break through the isolation. Another may become powerfully locked into his or her emotional state and hold desperately to his or her reality to keep a sane self-image.

Truly notice, listen, and pay attention in the moment, open to the possibilities that persons with dementia still have strengths, beauty, and so much to teach us about their reality in that moment. It is about allowing ourselves to be comfortable with inner silence and entering the other’s truth. Allow the connection to unfold. When we recognize their gifts, hear the core emotion of their story, or authentically identify with some aspect of their experience and reflect that back to them, we close the gap that separates our worlds; the person with dementia is no longer alone. Each of us feels seen, and each of us is more able to act and move into the present moment with the other.

Share the Joy
Mavis is one of hundreds of persons with dementia who have helped me understand that each one’s potential of experiencing psychological, emotional, and spiritual transformation is facilitated and encouraged by our supportive ability to interact with respectful, open, attentive, nonjudgmental, positive regard. In our ability to creatively enter  another person’s world, we become empowered to walk with them through adaptations and growth and emerge from challenged, frustrated, and fearful interactions into real, shared connections, regardless of how advanced the dementia is.

I began my work as a social worker knowing that my opportunity was to be with persons with dementia in such a way as to encourage each person to continue to participate in life. I found in the process that I also was participating in life more than ever before. This has been the beauty of connection for me—each of us was able to see the other and feel seen by the other; each of us moved beyond isolation; each of us was empowered to move forward and grow. We have guided, encouraged, inspired, and accompanied each other in connection—with ourselves, each other, the world around us, and the expanded field of energy. Each of us transformed in the single moment of connection; each of us changed in the most miniscule and grand ways forever.

— Nancy Pearce, MS, MSW, is a licensed geriatric social worker with more than 20 years of experience working in long-term healthcare and hospice settings. She specializes in dementia care and is the author of Inside Alzheimer’s: How to Hear and Honor Connections With Persons Who Have Dementia.