Alzheimer’s: it’s becoming a less distant illness and something directly touching us. If a friend or relative doesn’t have it or had it, it’s just a matter of time before someone you know will. Unfortunately, there is almost as much myth as facts inundating us in books and on the internet.

In Part I will look at both that directly relate to caregivers. In Part II I’ll suggest ways of structuring an environment to reduce anxiety. In Part III I’ll provide strategies for interacting with friends, loved ones, and even strangers with dementia. The series isn’t comprehensive–there’s too much to understand about dementia to cover in three short articles. But you can find valuable information in other sources.

Is It Dementia or Alzheimer’s?

The words are often used interchangeably and incorrectly. Alzheimer’s is one form of ten different types of dementia. Is it important to know the correct classification? Neurologists would say “Of course.” But caregivers are less concerned with labels and more with how to interact and be helpful.

While each form of dementia has some specific characteristics (e.g., hostility is associated with Dementia with Lewy Bodies), all share many features.

As a hospice bedside volunteer, my assignments were weighted with dementia patients, since before retiring from San Francisco State University I did research and conducted therapy with individuals with cognitive problems, including Alzheimer’s.

What Happens in the Brains of Those With Dementia?

Some contributors to online support groups and even authors in some popular books describe how a person with dementia slips back into being a child. They believe that’s the most appropriate way of interacting–to view this wonderful person with a rich history of experiences as if she’s a five-year-old. Nonsense!

One way of globally understanding what’s happening in the mind of someone with dementia is to envision yourself plucked out of a comfortable setting and thrust into a foreign country where you don’t understand the language. You don’t know anyone, and even the signs are unintelligible. You try to explain something to a stranger in English, but they look at you as if you’re crazy.

The analogy isn’t completely correct since the losses are progressive with dementia. But it gives you an idea what it might be like living with dementia. As an exercise, stay in your country, keep your language, but now lose the meaning of something each day for a week, such as your knowledge how to cook, being able to use a phone, knowing how to turn the heat up in your home, etc.

What’s Lost

Yes, short term, long term memory or both can be impaired in dementia, as it is in many age-related disorders. But something more insidious than memory is lost. It’s knowledge of abstract rules for functioning (e.g., how to hold a spoon, what needs to be done before doing to the bathroom, how to cook food, etc.)

The loss of these rules doesn’t happen all at once with dementia, but new occurrences can become frightening when the responses from others indicate they don’t understand what the person with dementia is experiencing. Compassion may not be enough to overcome anxiety. One person with early onset Alzheimer’s related to me a frightening experience. After crossing the street, he didn’t know how to step up from the street to the sidewalk, something he did since learning to walk. Although it only happened once, it gave him a preview of his future.

Think about the brain as a complex computer. It takes in information (perception) and matches it (executive functioning) with things stored in the past. The matches result in giving meaning to words, behaviors, and activities. The brain places these “meaningful” items in a temporary location (short term memory) before sending it off for permanent storage (long term memory). Problems with dementia can occur at any stage in processing, storing, or retrieving the information.

Understanding Behaviors

It’s not helpful to view “bizarre” behaviors as something similar to what you find in five-year-olds. When a caregiver does that, it can make problems of misunderstanding, anxiety, and confusion worse. A better approach is first to identify where the problem occurs in the processing or retrieval chain, and then use helpful strategies. In Part II, I’ll explore some strategies you can easily use.

8 Responses

  1. Ken

    Stan, here’s a very interesting interview with Terry Pratchett, who was diagnosed with Alzeheimer’s in 2007. https://www.youtube.com/watch?v=CG2Uc3ZGZDs

    From talking with other folks it seems also that the surroundings of a person with dementia are extremely important. That is to say that the surroundings must be consistent. To move a person from their apartment to an assisted living situation can be extremely disturbing and frustrating for a person with dementia. Consistent surroundings seems to be most important.

    Reply
    • Stan Goldberg

      You’re right about consistent surroundings. By “consistent” I mean identifying specific items that are transportable (e.g., a set of golf clubs, etc.) I’ll write more about this in Part II

      Reply
      • April

        My mother suffered from Lewey Body Dementia. She became confused with every step of a different environment. The first hospital stay was the worse. She reacted very strangely to a narcotic pain medication. She was fine 1 week before and was evening working part time. After this stay, she remained confused at home but not as severe. She then moved into a small apartment …again she became confused… then came assisted living again…. confusion. the last move was the nursing home and she remained confused and very lost. She passed away after 1 month in nursing home. We always made sure she had things that she knew were hers with every move. And my aunt and I visited her as much as we could.

      • Stan Goldberg

        Hi April,

        I know how hard it is when you want to help a loved one and feel powerless. I hope this series of articles and others I’ll be writing on Alzheimer’s will help people who are about to undergo what you had to.

      • April

        Dr. Goldberg,
        Thank you so much for all you do with your blogs and other writings. I know from my heart it helps many people who don’t understand about their loved ones disease . You are a very special person and caring person. It is so rare to find people in today’s world that care.

  2. April C

    Hi Stan, I am very impressed on your write-up. It is very helpful for us to know how people thinks of Dementia. Thank you for sharing your experience with us.
    Currently, I am working in a hospice in Malaysia. I would like to ask whether can I share in FB and credit to you? So that many people can be help with reading your blogs.

    Reply
    • Stan Goldberg

      Hi April,

      Thank you for your kind comments. Feel free to share any of my articles on Facebook or other social medias. When I was a bedside hospice volunteer I found that people serving patients with Alzheimer’s were often at a loss for what to do since normal communication was disrupted. I’m glad my articles are helpful.

      Take Care,
      Stan

      Reply

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