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.