The emotional side of Alzheimer’s disease

Published: January, 2007

Instead of trying to bring people back to reality, caregivers are advised to empathize and establish an emotional connection.

Alzheimer's disease is usually depicted as mainly a disease that affects memory and thinking, partly because memory lapses are so noticeable during the beginning of the disease. People in the early stages of the disease start to lose things, forget once-familiar faces, and struggle to recall recent events. Other cognitive problems soon develop, including a shortened attention span, difficulties with language, and an inability to think logically. In the later stages, people may completely lose the ability to speak. Eventually, much of what we consider conscious thought disappears.

But emotional aspects of the disease may be just as important, especially to the friends and family who serve as caregivers. On the negative side, Alzheimer's sufferers may have feelings of anger, anxiety, depression, fear, and loneliness. On the positive side, they may feel serene and joyful, and are especially capable of "living in the moment." Joanne Koenig Coste, an influential Alzheimer's disease activist- turned-consultant, believes that wandering, aggression, and other behavioral changes seen in people with Alzheimer's disease are the direct consequence of feelings that arise because of their cognitive difficulties. In her book Learning to Speak Alzheimer's, she calls it a "disease of the emotions."

Is it childhood in reverse?

In the 1980s, Barry Reisberg, a New York University neurologist, divided the progression of Alzheimer's disease into stages that correspond to child development, but in reverse. So, for example, the people in the "7e" stage who can no longer smile are at the same stage of development as infants who are 8""16 weeks old. A "6b" patient who can no longer bathe without assistance is like a 4-year-old. And so on and so forth. Reisberg coined the term "retrogenesis" to describe the phenomenon. Brain scans and other studies have found that it does have a physiological basis.

Some Alzheimer's disease experts dislike the analogy, fearing that it will lead to loss of dignity, and treatment that is inappropriate for adults. On the other hand, Alzheimer's disease patients seem to enjoy simple childlike activities like playing with a ball or modeling clay. Moreover, the advice to show empathy and boost self-esteem echoes the advice given to parents and caregivers of young children.

An emphasis on the emotional life of sufferers is a major theme in the growing number of books directed at caregivers. These advice books still have practical tips on everything from financial planning to meal presentation (use bowls instead of plates) to clothing (no zippers or buttons). But they also have pointers on improving the interpersonal dynamics between caregivers and people with the disease. Coste, for example, refers often to the need for protecting and bolstering self-esteem. Frequently that means being nonjudgmental and devising ways to accommodate cognitive deficits without drawing attention to them. People with the disease seem to have strong emotional memories, even from recent events, long after they've lost the ability to form less emotionally charged ones. As a consequence, caregivers are urged to show affection and connect at an emotional level "" even if the person can't remember who you are.

Support for this approach comes mainly from anecdotes, personal experience, and the memoirs of Alzheimer's patients in the early stages of the disease (they're usually written with the help of a caregiver). Although behavioral interventions have been tested in clinical trials, there is not much in the way of rigorous scientific evidence to go on. Yet Coste and other authors and advocates are persuasive when they argue that successful navigation of the emotional needs of Alzheimer's patients is essential to effective, humane care. How could it be otherwise?

Here is some of the advice they give:

Enter their world. People with Alzheimer's disease sometimes have delusions; challenging these delusions may only make them feel threatened and insecure. Instead, you should acknowledge the underlying emotion and perhaps redirect their thinking. Say a patient falsely accuses someone of stealing a wallet or pocketbook. Paul Raia, director of patient care and family support for the Massachusetts chapter of the Alzheimer's Association, says you might respond by saying "You must feel terrible that your pocketbook is missing. Let's go look for it." If she talks about her dead mother as if she were still alive, rather than disabuse her, you might say, "Your mother sounds like a lovely person. Tell me about her." Sometimes entering this world means just playing along. In her book, Coste tells a wonderful story about her husband, who developed Alzheimer's at a relatively young age, feverishly scrubbing the Teflon off a frying pan. Instead of scolding him for ruining it, she congratulated him on a fine cleaning job.

Protect their self-esteem. Caregivers are often told to break down and simplify tasks for Alzheimer's sufferers. But if you do too much for the person, you may cause anger and frustration by making him feel more helpless and disabled than he really is. You have to consider safety, too; you can't let him drive just because he wants to. Striking the right balance "" helping and protecting without seeming to condescend or belittle "" is difficult, especially as the abilities of the person change from day to day while slowly declining.

Books for caregivers

Alzheimer's Early Stages (Hunter House Inc., 1999, 2003) by Daniel Kuhn

Learning to Speak Alzheimer's (Houghton Mifflin, 2003) by Joanne Koenig Coste

Talking to Alzheimer's (New Harbinger Publications, 2001) by Claudia J. Strauss

Take a leadership role. This is one of the central pieces of advice in Daniel Kuhn's Alzheimer's Early Stages. Someone has to start making decisions and assuming responsibility for the person with Alzheimer's disease. Especially if that person is your parent, this change may involve an uncomfortable, volatile reversal of power. It's yet another difficult balancing act: You must take charge while minimizing people's disabilities and maximizing their strengths.

Don't make them wait. A shortened attention span can make waiting even a few minutes trying for people with Alzheimer's. They become impatient, agitated, even aggressive. Sometimes their problems with bathing, grooming, or eating are the result of waiting for a caregiver to get organized, not the activity itself.

Avoid overstimulation. With the best of intentions, caregivers often want to include loved ones in family gatherings, especially during the holidays. But many people with Alzheimer's disease are sensitive to sound, especially several sounds at once. A raucous family event can be overwhelming. You might consider a smaller gathering with just one or two people instead. Other strategies include limiting visits to a couple of hours and setting aside time for a nap. Turning off the television and lowering the volume of music while people are talking and eating is another kindness.

Keep the person physically active. People with early disease have said that vigorous exercise seems to sharpen their thinking and settle them down emotionally. Moreover, Alzheimer's disease and depression often go hand in hand, and numerous studies have shown that exercise is good for depression. In a study published in 2003 in the Journal of the American Medical Association, University of Washington researchers showed that exercise, combined with lessons in behavior management for caregivers, improved physical health and relieved depression in Alzheimer's sufferers.

Sing a tune. People with Alzheimer's disease usually remain able to enjoy music even in the later stages of the disease. Studies show that if you sing to them, they respond especially well, becoming more communicative, less aggressive, and less likely to scream. In a study published in 2003, researchers at the Karolinska Institute in Sweden found that both caregiver singing and background music had positive effects on late-stage patients. They sat up straighter, their movements became stronger and more regular, and their awareness improved. Singing by caregivers was especially effective in drawing them out.

Tips for talking to someone with Alzheimer's disease

  • Don't shout. Hearing is not the problem. Speak in a calm, even, and warm tone of voice.
  • Don't carry on a conversation with someone else as if the person wasn't there. It's understandable that this happens when communication seems impossible, but people with experience in caring for Alzheimer's patients say that patients notice and resent the fact that they are being treated as if they didn't exist. One complaint of people at the early stages of the disease is that doctors talk to family members rather than to them, even when they are present.
  • Use common, simple words. But avoid too many pronouns. The person may get confused about who "he," "she," and "we" are referring to.
  • Use leading statements rather than open-ended questions. "Would you like a cup of coffee?" is better than "What would you like to drink?" But a simple, inviting statement like "Let's have a cup of coffee" is even better.
  • Make eye contact, touch the person, be conscious of your body language. Nonverbal cues become increasingly important as the disease erodes language-oriented thought. Because these cues are so important, talking on the telephone is often a poor substitute for being there in person.
  • Say things that express positive emotions explicitly. In Talking to Alzheimer's, Claudia J. Strauss suggests some lovely things you might say as you're leaving after a visit: "I enjoyed this so much," "I always feel good after talking to you," and "Seeing you is the best part of my day." All of these statements send a strong emotional message.
  • Make the most out of the last word. According to Alzheimer's disease expert Joanne Koenig Coste, sufferers will often latch on to the last word in a statement, probably because it's the easiest one to remember. If you ask, "Would you like to wear the green or the blue shirt?" only the word "shirt" may stick in the person's mind, and you won't get an answer. But Coste says "care partners" (a term she prefers to caregivers) can turn this tendency to their advantage. Ask "Would you like to wear this green shirt today or the one that's blue?" and the person will say "blue." She feels as though she has decided for herself rather than being told what to wear, but the choice has been made so easy that she feels little anxiety about it.