I sat with my mother and her caregiver, Aliza, one afternoon in the Alzheimer’s unit of the nursing home. With my mother between us, Aliza and I chatted about the hot weather we had been having. All of a sudden my mother hauled off and punched me solidly in the arm.
“Why’d she do that?” Aliza exclaimed.
Behavior like punching is usually labeled as aggression in people with Alzheimer’s. If it happens more than once or twice, the person may be given medication to sedate her, with no attempt made to answer the question, “Why’d she do that?” I knew, however, exactly why my mother did that. We hadn’t included her in our conversation.
All behavior is communication, and because, by then, my mother had limited use of language, often her behavior eloquently told us what she was feeling. Unfortunately, her language deficits also meant it was easy to forget to show her we were talking to her too. As Aliza and I resumed chatting, I began to address my mother directly, and she smiled with unmistakable satisfaction.
No one likes to be excluded, and that is no less true of people living with Alzheimer’s or any other dementia. Their basic psychological needs are the same as everyone else’s. Why, then, are those needs so frequently overlooked? In part, it’s because people with Alzheimer’s often do things we haven’t seen them do before, and strange (unfamiliar) behavior can alienate us. If instead we “listen” to their behavior, interpreting it as an attempt to express a need that isn’t being met—like my mother’s demand to be included—we can provide what they lack and head off behavior that can drive us apart.
People with Alzheimer’s are normal people—with cognitive impairments. They have normal needs, but they require a lot more help in meeting them because of their cognitive challenges.
Being included is much broader than being part of a conversation. It means belonging, having a role, feeling important and valued—in our families, at work and with our friends.
When Alzheimer’s progresses beyond the very early stage, most people can no longer perform their jobs. Consequently, they lose that crucial role and the colleagues who validated their importance.
Social friends often fall away as well. A man’s buddies may be unsure how to interact with their friend now labeled “Alzheimer’s patient.” They may be afraid to see Alzheimer’s up close. If they had the courage to approach and the patience to attend closely, to listen, they’d be surprised. They’d discover that, in spite of his memory lapses or difficulty finding the right word, their friend is substantially the same person he always was. And their loving attention would help create the environment he needs to be himself.
My friend Bill, upon hearing that his best high school friend, Ethan, had been diagnosed with a form of dementia, drove 250 miles to see him. At first, he noticed that Ethan was easily distracted and had trouble finding the words for what he wanted to say. But Bill had brought a photo album from their high school days. He got it out, and they laughed and relived happy times. By the time Bill left, Ethan was the Ethan he remembered.
When friends don’t step up, family caregivers, who are trying discreetly to take up the slack in the person’s role in the family, are left trying to make up for the losses of work and friends as well.
When my mother lived with me, I turned to an adult day program two days a week to give me a break and give my mother another circle to belong to besides our family. At first she was resistant, claiming she was out of place with those “old people,” many of whom were younger than she. But by her second visit she had reclaimed one of her longtime valued roles—that of volunteer—and told me she went there “to help those poor people.”
A good day program is sensitive about affirming a participant’s accustomed role and status. For instance, a man who was a high school principal is used to a certain respect and to giving orders, not taking them. Unless a similar role is carved out for him at the day program, there are likely to be clashes as he tries to assert that valued part of himself.
There are other ways we can show people with Alzheimer’s they are valued. The head nurse of an Alzheimer’s unit came to work one day, tormented by a problem she was having with her teenage son. Because she couldn’t get it off her mind, when she gathered the residents for the morning discussion circle, she decided to tell them about her problem and ask their advice. Yes, she asked their advice! The responses she got astounded her. Not only did most of the people understand what the problem was, a few gave her good suggestions.
Without thinking, we exclude people with Alzheimer’s from many healthy interactions because of the assumptions we make about what they can understand.
What we believe about people affects how we treat them. And how we treat them affects what they believe about themselves. They are “listening” to our behavior too.
Maggie Sullivan has come to know Alzheimer’s intimately. She was caregiver and advocate during the eight years her mother lived with the disease. For the past 30 years, she has facilitated caregiver support groups for the Alzheimer’s Association, learning from the experience of more than 300 members of those groups. The opinions she expresses here are her own. Maggie is also a writer whose essays and articles have appeared in the New York Times and elsewhere.
