Disorientation: Why It's More Devastating Than the Loss of Words


We try to parse diagnostic data into finer and finer distinctions, thinking the dissection will result in better care for loved ones with dementia. If only the transition from classification to intervention was that simple.

When I suggested to a friend that some of his father's behaviors could be indicative of dementia, he said, “No it’s not dementia, it’s Alzheimer’s.” He proceeded to go into a long list of diagnostic features distinguishing Alzheimer’s from other forms of dementia and memory problems associated with aging, alcoholism, and chronic sleep deprivation.

I listened patiently throughout the twenty-minute lecture. Although the lesson was informative, I wondered how knowing the finer distinctions for various dementias would change anything in helping him cope with his father’s problems.

Forget Labels: Focus on Behaviors

There is much interest in developing differential diagnostic tests for various cognitive problems, but much less interest in developing specific strategies for treatment. As a caregiver, you don’t face labels, but rather difficult or baffling behaviors your loved one presents daily; sometimes hourly.

You don’t need to know the type of memory problem your loved one has before focusing on minimizing her disorientation since some strategies cross diagnostic classifications. For example, disorientation is common for people with Alzheimer’s, other forms of dementia, chronic sleep deprivation, and age-related memory problems.

Lost in Phoenix

Some years ago I entered a huge mall in Phoenix with my son when we visited potential colleges for him in Arizona.

He went off by himself to look at video games while I entered an office supply store. We agreed to meet at a specific time at the entrance we came in. I was having severe sleep problems then and neglected to identify any landmarks by the store’s entrance. At the appointed time, I stood in front of the entrance and waited for my son.

After ten minutes, I knew either something was wrong with him, or I wasn’t at the right entrance. I looked at the store’s map and saw ten entrances. I was disoriented and realized my son would worry when he couldn’t find me. That’s when I panicked.

Similar Feelings

What I experienced was similar to what anyone with a memory problem would go through when lost in what should be a familiar place.

It’s difficult to describe the feeling of utter helplessness a loved one experiences when disorientated and seeing no way of reducing the confusion. Fortunately for me, I knew my disorientation would end by staying put and waiting for my son to find me. He went to each of the entrances until he saw me standing at the wrong entrance with the expression of a lost child.

Creating Strategies

From the experience I realized a strategy that would have worked for me would also have worked for anyone with a memory problem. I needed an external mapping system that would allow me to know where I was and where I should be.

Many people just focus on a loved one’s loss of specific information, such as names, dates, locations, etc. As distressing as the loss of these bits of information may be, more devastating is not knowing how things work and how to move through a world that is becoming confusing.

With a general understanding of how normal memory works, we can develop strategies to reduce the problem of disorientation, regardless of the diagnostic classification. Strategies effective for one can be effective for others.

Guidelines for Reducing Disorientation

We move easily through a world we understand. We walk down a street and say to ourselves, “I was here last week with Joe, and we had a great meal at the restaurant.” We feel comfortable because the location is grounded in experience.

But what happens when significant links to the past are disrupted? Not only don’t you have any recollection of what you ate, but Joe isn’t in the picture, the restaurant is unfamiliar, you can’t remember ever being on this street, you’re not sure what city you’re in, and alone, how you will find your way home.

You didn’t lose just the memory of specific events but the map tying everything together. Start with the assumption that many memory problems involve losses of this type. What you can do to reduce your loved one’s potential for being disorientated is to externalize the lost map.

Provide something concrete such as a card showing where you will be taking him, pictures or names of people who will be there, and a written description or pictures of what he will be doing. Never rely on just saying the words. Review the material before you start the journey and refer to it often as you approach the store, house, etc.  Disorientation is significantly more upsetting than the ability to remember names, dates, and events.

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