Connecting With the Person Who Has Alzheimer's Disease
Vol. 10, Issue 05
I remember a woman I'll call Grace whom I visited frequently in a skilled-care facility. She was a lovely 75-year-old woman, and her room was full of paintings she had created over the years as well as memorabilia from her travels around the world.I often would find her walking in the hallway and we would return to her room for our visit. She loved to entertain company and was very talkative. We had delightful visits together. Grace also had Alzheimer's disease, and I could not understand most of her words. Her speech was a series of indiscernible sounds and words. She enjoyed connecting through touch and massage.
One day while I was massaging her hands, she looked me straight in the eye and said, clear as day, "It's about connection!" A little stunned, all I could say was "Yes it is." She smiled and went back to talking in sounds I couldn't totally make out. How do we account for that moment of clarity in her speech?
Many people with Alzheimer's disease and other forms of dementia have difficulty forming words or organizing thoughts into language because the disease process damages the areas of the brain responsible for these functions. This creates a huge gap between people with dementia and others. Caregivers of all kinds struggle with how to communicate with people living with the effects of dementia. You may or may not have clients with dementia, but it is quite possible that you will come in contact with someone in your life in this situation. For years, I have had a fascination with how to connect with people with brain dysfunction. Here's a little of what I've discovered so far. I hope it serves you well.
Bridge the Gap
First, it's important to distinguish between the idea of talking to and being with the person you are trying to communicate with. Talking to implies that you have the right words and that your words will be understood and responded to, which is not always possible for the person with dementia. Being with is joining the person's world in the present moment. To be with someone is a mutual exchange, and the intention is connection rather than communication. Nancy Pearce, in Inside Alzheimer's, offers the following four tools of being with.
Touch: As massage therapists, we understand the power of touch to decrease pain and the effects of stress and to uplift mood. Touch provides a means of instant connection and decreases feelings of loneliness or fear. It can lead to recall of pleasant memories associated with touch from the past. Sometimes, touch can lead to profound moments where we witness unexplainable moments of clarity.
Observation: Tuning in to clues about a person's state is essential to bridging the connection gap. Pearce encourages us to observe the immediate physical needs. Do they need a drink or to go to the bathroom? Pay attention to what's going on in the environment that may be confusing to the person. I remember a woman who was afraid of a bush outside her window. She told me that when the wind blew, the bush seemed angry. She often had trouble sleeping because she worried about that mad bush. A simple thing like closing her curtain helped sooth her.
Encourage Expressions: Let the person know that you are present. Maintain a calm attitude and use your body language to demonstrate your interest. Good eye contact and mirroring the facial expression are ways to stay connected through body language. Ask simple questions to encourage the person to tell his or her story.
Listen Beyond the Words: Pearce says that to be with the person with dementia requires a different way of listening. Rather than trying to understand the words, attempt to identify the experience of the person at the present time. This results in the person feeling validated and worthwhile.
The most powerful communication tools I've ever learned came from my friend and mentor, Naomi Feil. She created Validation, a therapeutic way of communicating with people with dementia. Validation is a holistic approach that looks at the whole person and human needs, not just the condition of the disease. Naomi talks about stepping into the world of the old person as a way to bridge the connection gap.
I've distilled her concepts into a simple approach involving asking myself two questions. These questions help me to respond in situations when I was with someone who is confused or agitated. First, ask "What is their reality in this moment?" The answer will give you a clue to the world they are in at the moment. You can then be with them in their world. The second question is "What are they feeling?" Since we can't see a motion picture of what's going on in another's mind we can rely on clues about how they are feeling. What do their facial expression, body language or voice intensity tell you? Now comes the action part. First, reflect back or join in their reality and acknowledge their feeling.
Let me illustrate this with a story. There is a woman in a facility where I provide sessions who, each day around 4 pm, worries that she needs to get home to make supper for her family. She walks the hall asking everyone how she can get home. As time passes, she gets more anxious and upset. The staff is expected to take her to the dining room for dinner at 5 pm, not an easy task when she is determined to get home to her family.
I thought I would try having a session with her during this time in hopes of easing her anxiety. So I asked myself, "What is her reality?" Clearly it's time for her to be getting home to make supper for her family. In her mind her family would be home soon and she needed to be there. OK, now that I understood where she was at the moment, I could be with her in her world. Next question: "What is she feeling?" She seemed frustrated that she couldn't find a ride and she became increasingly angry and fearful.
I walked with her and asked her simple questions about her family and what they liked to eat for dinner. I acknowledged her feeling by saying things like "it's so frustrating to be late" and, with humor, "my son thinks he will just starve if I'm five minutes late with a meal!" She nodded her head and laughed with me. At one point, we sat down and I offered reassurance with touch by gently stroking her back and holding her hand. The touch seemed to bring her into more of an awareness of the immediate moment and she let go of her fixation on getting home. What created the shift in her was not so much what I said but the fact that she was seen and heard. She was validated and the intensity of her feelings was diffused allowing her to redirect her attention to the immediate environment. We walked again, but this time to the dining room where she joined her friends for dinner.