beyond the video

Learning to Speak Alzheimer's -
More Than Words

A simplified approach to the care for Alzheimer's.

Video summary
Joanne Koenig Coste, M.Ed., is the author of the 2003 book Learning to Speak Alzheimer's, which was born out of her years of experience caring for her first husband, who died of dementia while still in his 40s, and the many years of consulting which followed.

She developed a method of Alzheimer's care which she calls "habilitation," using the old meaning of the word: "to make capable." It has five basic tenets:

  1. Make the physical environment work, which generally means simplifying it.
  2. Know that communication remains possible, and concentrate on the emotions the person is expressing.
  3. Focus only on remaining skills, and value those remaining abilities.
  4. Live in the person's world. Never question, chastise, or try to reason with the person.
  5. Enrich the person's life. Create moments for success.

In this series of video excerpts about her ideas, she is joined by Lois Pecora, M.A., an Alzheimer's Patient and Family Advocate, and Barbara Moscowitz, MSW, from the Geriatric Medicine Unit at Massachusetts General Hospital. Also featured are a number of people with Alzheimer's disease (AD) and their spouses, whom Ms. Koenig Coste prefers to call "care partners," because "caregiver" suggests a one-sided interaction. (However, Ms. Koenig Coste shows an unintended lack of sensitivity in this video toward people with Alzheimer's disease, by referring to them as "patients," a designation they usually prefer to avoid, and as "Alzheimer's people," putting the disease before their humanity. The more widely accepted designation is "person with Alzheimer's disease.")

This section of a two-part video on the subject focuses on 1) our non-verbal communication – gestures, body language, facial expressions and tone of voice – as a stronger conveyor of messages than our words, and 2) the messages in the behavior of the person with dementia.

Regarding the latter, each time the person becomes upset, Ms. Koenig Coste recommends keeping a log related to the time, place, and what was happening in the environment. Environment can mean any assault on the senses, such as the sounds, sights, and touches the person is experiencing. Or something we are doing might be the cause. The key question is, "What's going on around the person?" She suggests that after about 10 entries, a clear pattern is likely to emerge that shows something triggering the person's discomfort. Once we understand the trigger, we can often prevent the discomfort by being sure the person is engaged in something satisfying beginning about 10 minutes before the usual trigger time. In the video example, Bill, the husband with dementia, seemed to get upset with preparations related to dinner, and his wife changed that trigger by having him play with his dog while she was getting dinner ready.

Ms. Pecora noted that because people with dementia often see their world as confusing and uncertain, helping them feel safe and comfortable are two key ingredients in keeping them from becoming upset. Furthermore, she cautioned us to look for additional causes of discomfort, such as whether the person is ill. A person with a headache, for example, might be expressing pain through crabbiness rather than asking for an aspirin.

The rest of the video is related to the other concepts of habilitation with a few ideas that care partners may not have considered. For example, the person with AD eventually loses a sense of time, so that tomorrow, next week or even "in two hours" may be meaningless to him or her. That can be hard for us to grasp. People with AD are also highly aware of all the control over their lives they are losing. Therefore, doing everything we can to help them feel in control contributes to their comfort. One spouse said to her husband, "You can take me out to dinner tomorrow night." He may not understand the concept of tomorrow, but he can understand that if he is taking his wife out, he is in charge.

Applying the video to your situation

Most of us intend to be kind and loving in all our interactions, but we are human. Sometimes we get angry and impatient, and we snap at the person with dementia. Joanne Koenig Coste suggests that people with Alzheimer's disease are very quick to pick up on our emotions. Have you known that to be true? When you are upset is the person with AD flustered and uncomfortable, too? When you are calm, is he or she usually calm, too?

Have you ever used Ms. Koenig Coste's idea of keeping a log to identify the trigger for what is upsetting to the person with dementia? If so, did it work? What triggers did you identify? If not, do you think it's worth trying?

If you have found ways to keep the person with AD from becoming upset, what are they? What calms or brings pleasure and comfort to the person with dementia? Does it work every time?

As a result of their confusion over the world and their role in it, personal safety often becomes a key issue for people with dementia. Have you noticed this? In what ways?

This video focuses on spouses, but at the very end of the video excerpt, Barbara Moscowitz cautions adult children of people with AD to be careful not to be too forceful in taking charge, because parents almost always want to remain in control and not have decisions made for them by their children. Have you found this to be true? In what ways?

Adapted from Learning to Speak Alzheimer's: An Introduction to the Habilitation Approach to Care, Image Studios Inc.

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Beyond the Video

...because people with dementia often see their world as confusing and uncertain, helping them feel safe and comfortable are two key ingredients in keeping them from becoming upset.