The last two months I’ve talked about a lecture that I attended, “Understanding the Person with Dementia: How to Communicate Effectively.” It was presented by Susan Stone who is with the Alzheimer’s Family Day Center (AFDC) in Fairfax, Virginia and does outreach and education. Communicating with a person with Alzheimer’s disease (AD) is a challenge which takes patience and understanding. This is a continuation of her lecture and the final in the series of three articles.

To communicate with a person with Alzheimer’s disease (AD), we need to understand their world. There is no point in arguing or correcting. The patient’s reality is not your reality so join the individual where he is. Simply acknowledge the statement and emotion behind it even though you know that it’s incorrect. Avoid asking questions that they cannot answer. Allow them to reminisce.

Make positive statements. Try going through the day without saying “no.” Difficult? Avoid pronouns like it, he, she. And use very simple explanations. Details often overwhelm them and can cause increased anxiety.

Here are some strategies to consider.

  • Offer guided choices. They are losing their right to make choices so say something like “chocolate or vanilla” and they will likely remember the last word.  The speaker humorously added that if there are only two choices and you want the chocolate one, offer the chocolate one first followed by vanilla since they will probably choose vanilla.
  • Write it down and use labels. During the late stages, labels won’t help, but during earlier stages of AD, they will help.
  • Validate emotions rather than facts.
  • Avoid overstimulation.
  • Model appropriate behavior.
  • Fill in lost words, although this depends on the person.
  • Turn your questions into answers.
  • Use events to measure time.

Listening is extremely important. Learn to read body language to figure out what the person is trying to communicate. Is it pain, frustration, fear, pleasure, boredom? Survey the environment as well to see what’s going on. Focus on the person and listen. One AD patient said,

I have taken time to put words together and I may be unable to repeat it.

Another AD patient said, I’m doing the best I can. They may overhear you talking about them so be careful. The ability to understand what is being said outlasts the ability to speak effectively.

The understanding the person has might come from body language and tone of voice more than from the words that you use. Use humor gently and never at the expense of the individual. But humor is everywhere; just keep looking for it.

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Mary Lucas (Photo courtesy of FCPS)

Some caregivers have discovered a useful way of coping with caregiving challenges—they write. Writing their story makes it easier to carry.

Mary Lucas, for example, is a professional woman who specializes in providing marketing and sales support to credit unions. She is also the primary caregiver to her mother, who has Alzheimer’s Disease. Mary began writing when her only child left for college. Here, she reflects on writing about her mother, what that’s been like, and her thoughts about attending a “Writing Workshop for Caregivers” that will be held on Feb. 20, 2010, in Alexandria, VA.

I’ve done a lot of freewriting about my mother. I write about my mother to help me deal with the situation. At this point she has to go into assisted living. I have to find the right place, hope she likes it, clear out her condo, deal with the financial arrangements. When I think of the whole thing … I feel a weight pushing down on me.

Yesterday I visited my mother, and she made a funny comment that was really apropos to what was going on. Writing about those moments helps you deal with the situation in pieces rather than as this whole crushing weight. I’ve never done any psychoanalysis or worked with psychologists, but I know people who have, and they were told to write about things. Now I understand why. When you write about things, you can deal with things in layers, even create good memories.

To me writing is very similar to the visualization they do with athletes. The writing helps you focus on what you need to focus on.

When I write, I generally like to write by myself. But I also like writing with others. You can find a lot of inspiration in a class or a writing group. Sometimes you might not know if someone in the group is at a bad point with something you’re writing about and want to share with the group, so you might be a little reluctant to bring that out. But I don’t dwell on that, and I go with what comes up.

People can be afraid of their emotions, but again, people aren’t coming to dump, to be sad, they’re coming to support each other. There will be laughter and there’ll be a lot of bravery—this is how we get through it, how we stay focused on the goal and what we have to do today.

There’s something about being in a room of people with shared experience. This workshop, for instance isn’t going to be maudlin. It will be positive. I know this from being around different writing groups over the years. I don’t know anyone—even people who say they’re not writers—who didn’t walk away from a workshop or retreat and say, “This was so good for me.”

If you are interested in giving yourself the gift of sanity—the chance to make sense of your life, to write, alone and with others—consider attending the “Writing Workshop for Caregivers” on February 20, 2010, from 10 A.M. – 2 P.M. We’ll meet in the welcoming environs of the Fireplace Room in Hollin Hall, a lovely historic home on the grounds of Mt. Vernon Unitarian Church in Alexandria, VA. Or share this information with another caregiver, someone who may need or want a chance to write her story. For details, please email Joanne Glenn or call 703.721.2088.

How is dementia different from Alzheimer’s disease? According to author Molly Shomer, she says that the term dementia seems to be preferred over Alzheimer’s disease possibly because of the less frightening connotation and that many are using the word interchangeably, but that is not correct. Dementia and Alzheimer’s are different.

Shomer says dementia is a symptom, just as pain is a symptom for something causing the pain. According to the National Institute of Neurological Disorders and Stroke, memory loss by itself does not mean you have dementia. People with dementia have serious problems with two or more brain functions, such as memory and language. Many different diseases can cause dementia, including Alzheimer’s disease and stroke. Drugs are available to treat some of these diseases. For a list of other dementias from the Fischer Center for Alzheimer’s Foundation, click here.

So the actual cause of dementia could be one of a myriad of things where cognitive abilities have been impaired. With dementia, it could simply be a temporary thing if the cause is treated. On the other hand, Alzheimer’s is an actual disease and the disease causes dementia. Many different diseases can cause dementia, including Alzheimer’s disease and stroke. Drugs are available to treat some of these diseases.

What we know about Alzheimer’s disease today, according to the Alzheimer’s Association, is that:

  1. Alzheimer’s is a progressive and fatal brain disease.
  2. Alzheimer’s is the most common form of dementia.
  3. Alzheimer’s has no current cure.

In our next post next week, we will specifically look at how Alzheimer’s disease is defined. In the meantime, challenge your brain to something new as was discussed here.

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