beyond the video

Learning to Speak Alzheimer's -
A More Positive Path

An organizational method for dealing with Alzheimer's.



Video summary
This video is a continuation of the topic of habilitation as described in "Learning to Speak Alzheimer's – More Than Words." The term as a method of caring for people with dementia was coined by Joanne Koenig Coste, author of the 2003 book, Learning to Speak Alzheimer's. Ms. Koenig Coste uses the term "habilitation" to mean "to make capable." Dementia is progressive; we cannot rehabilitate people with Alzheimer's disease (AD), but we can maximize their remaining capabilities. You can find a summary of the method in the downloadable handout for the first part of this two-part video, which also introduces the three experts who are interviewed about the topic.

This video focuses more on people with dementia and their spouses.

  • In spite of what he says are difficulties with language that make it hard for him to complete a sentence, and "drives me crazy," Bernie clearly articulates his language frustrations.
  • Ed talks about how vulnerable he feels and how hard it is for him to give up what he used to be able to do easily.
  • Ed's wife talks about his career as a physician and notes that he feels useless and unhappy if he isn't doing something to contribute to whatever task is at hand.
  • Shirley, another person with dementia, expresses her fear that her husband might die before her, noting, "I don't care if I go, but I don't want to lose him." That provides an opening for the experts interviewed to advocate for caregivers to care for themselves. Ms. Koenig Coste says the well spouses MUST seek out a support network to help them learn techniques and learn they are not alone.
  • Although maintaining a sense of humor is not given much emphasis, one caregiver describes his wife's confusion over what to do with a bra, insisting she doesn't wear one. He says, "Sometimes you just gotta laugh."

The tenets of habilitation are quickly noted – simplify the environment, focus on remaining skills, provide opportunities for success and so on. Ms. Koenig Coste notes that even when people with dementia are bedridden and in the final stages of the disease, we can create feelings in them of safety, love, dignity, emotional stability and familiarity.

Applying the video to your situation

If you are the caregiver of someone with dementia, what has that person expressed to you are the most difficult aspects of dealing with his or her condition?

Can you empathize with people with dementia? If you have ever had trouble making yourself understood or completing a difficult task, can you understand their frustration?

People with dementia almost always want to feel useful as long as possible. What tasks or parts of tasks have you found the person you are caring for can still do? How else have you created feelings of success in the person?

Joanne Koenig Coste says that even late stage, bedridden people with dementia can be made to feel safe and loved and provided with emotional stability and familiar surroundings. Do you have any experience in this? What has worked for you?

How are you taking care of yourself and your own needs? Are you a member of a support group and have you found it helpful? (www.alz.org can help you find the services offered by your local Alzheimer's chapter.)

Support groups and classes can also be a way of learning new caring techniques. What techniques or caring hints have you learned over time?

Keeping your sense of humor was mentioned briefly as a way of coping. How has humor helped you? What other coping tools do you use?

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

For More on Full Video: www.terranova.org

Beyond the Video

The tenets of habilitation are quickly noted – simplify the environment, focus on remaining skills, provide opportunities for success and so on.