The Dementia Experience Explained

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Dementia Experience Explained

Understanding the Dementia Experience is the First Step for a Caregiver

The Dementia Experience Explained

A familiar Native American proverb reminds us to “never judge another man until you have walked a mile in his moccasins.” When it comes to the dementia experience, learning to see what it might be like to live with dementia symptoms provides powerful insights that allow us to interact with greater compassion, awareness, and effectiveness. Many of the disconnects we experience when we are around people living with dementia are repaired when we learn what the world looks like from their vantage point, and the notion of ‘behavioral problems’ shifts toward a recognition that the other person’s behavior is actually quite rational in certain contexts.

Consider the following scenario: You are in a restaurant catching up on old times with some friends when you recognize the urge to use the bathroom. As you begin to stand, a server runs from the other side of the room, leaps over a chair, grabs you by the shoulders and frantically and emphatically declares, “It’s not safe! You need to sit down!”.

Imagine how you would feel. Would it make any sense to you? You would probably think the other person had lost her mind. You would likely feel intense confusion and distrust for the person since the experience is so outside the realm of your everyday experience.

Now, let’s turn the experience around a little. Suppose you were 95 years old with advanced Alzheimer’s disease and had a history of about twenty falls in the last month. Your family moved you to an assisted living memory care community for closer observation and support, but the staff had never experienced any sort of virtual dementia tour or other training that would increase their ability to empathize with you. You might find yourself sitting at the dining room table thinking you were in a restaurant because all the right cues are in place, from uniformed staff members waiting tables to multiple tables and a lot of strangers. If you experienced the urge to use the bathroom, go home, find your spouse, or any of the many other reasons why restaurant-goers get up from the table, you would likely stand. Your behavior may cause a conscientious but less trained staff member to see you standing and register an immediate fall risk. The staff member’s thinking would trigger him to run over and tell you it’s not safe. If you remembered it was unsafe not to stand you would not be doing it, so the staff member’s behavior in this situation would feel all wrong to you.

If, on the other hand, the staff member acted as if you were a friend he had not seen in many years, called you by name, smiled, and hurried over to you and gave you a side hug- all while mentioning one or two things a stranger would not know about you, you might assume the person was a friend who was excited to see you. The staff member’s hug would help steady you, but your interpretation of it may not account for that fact. In other words, he would have created the illusion that things were happening in a more normal and natural way and his actions would help you maintain a sense of dignity and control while accomplishing the objective of preventing a fall.

Handling situations like this one in ways that make sense to people living with dementia hinges on creating the illusion of control, but learning to help a person with cognitive decline feel like things are happening in a normal and natural way requires coaching and practice. At A Mind For All Seasons, we offer guidance and dementia coaching to both family care partners and professionals. Contact us today to learn how you can interact more effectively with people experiencing Alzheimer’s disease or another type of dementia.

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