by Ken Hepburn
Close your eyes and imagine. Imagine yourself on a snowy, icy road at dusk, keeping up with heavy traffic at 70 mph – using wipers that should have been replaced last month. Now imagine the radio is stuck on a heavy metal station and the volume can’t be adjusted. And your passenger is chattering away, asking you questions and telling you how to drive. And now, you see in your rearview mirror that an 18-wheeler is bearing down on you, about to pass and splatter slush all over your windshield.
How are you feeling? And what would you like to do?
Most people who imagine this scene say they feel tension, panic and anxiety mixed with irritation – focused, in large part, at the passenger. Most say they want to shut the radio off, shut the passenger off (maybe even bark at the person), get off the road, and regain a sense of control and calm – and feel safe.
Confusion like this is a central caregiving issue in dementia and a constant threat for persons with dementia. The disease is taking away all the powers people use to keep their universe in line and to give themselves a sense of order. Things persons with brains that are not affected with a disease like Alzheimer’s have the capacity to monitor when situations are getting out of hand. And they typically have a collection of strategies for bringing things back to an acceptable level.
But for persons with dementia, those safety systems are eroded by the disease. For them, increasingly, the universe is swirling around them, and they are vulnerable to the sense of terror you might have felt on that snowy, icy road. And the person with dementia is no longer able to steer off the highway and regain a sense of calm and order. All the person is likely able to do is feel the fright and perhaps strike out at whatever or whoever is near.
So what is a savvy caregiver to do about confusion?
Recognizing that confusion may be the underlying mechanism of agitated or disturbed behaviors is a good starting place. This perspective allows you to look at the whole scene to try to determine factors that might be prompting the confusion. It also allows you a care target: you want the person to feel calm and secure and that things are under control.
Look for possible sources of the confusion:
Might there be a physical cause? Could the person be overly tired? Might the person be ill (check temperature) or in pain for one reason or another?
Is whatever the person doing just too much? Dementia increasingly affects the person’s ability to do things – even things he or she was good at. Tasks that exceed the person’s capacity can overwhelm or frustrate a person.
Is there too much going on in the environment? Are there too many stimuli for the person to handle? This capacity, too, changes and erodes as the disease progresses, so environments that might have been pleasurable at one time (e.g., a shopping mall) may turn into places that overstimulate the person. Similarly, events that once were a joy (e.g., large family get-togethers) may now be toomuch.
Are you doing something that might be adding to the confusion? Again, ways of interacting with the person gradually lose effectiveness over time and might become confusing. So step back and look at the whole picture. You can provide a sense of security with your reassuring presence and perhaps with a distraction that you know usually engages the person. But, as you do these things, exercise control. Look for things in the scene you think might be disturbing the person and that you can change. And then change them – and see what happens. Try asking the person to help with smaller, less complicated tasks. Scale back on activities that you know were once pleasurable: instead of a large family gathering, scale back to smaller, perhaps individual visits; instead of excursions to the mall, keep on taking outings, but to quieter spots with fewer people. Look at the way you have been communicating with the person, and experiment with simpler ways. How you scale back will depend on how far the disease has progressed, but here are some suggestions: instead of “normal speech” (long sentences with lots of complications), use short, simple sentences; instead of speech alone, mix short directions with visual cues; replace words with touch.
Keep always in mind that dementia does not protect the person from other diseases and disorders. Having a relationship with a responsive primary care physician or nurse practitioner is important to the savvy caregiver. If you suspect that confusion has its roots in something physical, use that relationship. A call or visit sooner rather than later is a good rule.
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