Alzheimer's A to Z

with Dr. Jytte Fogh Lokvig



One of the effects of Alzheimer’s is the difficulty and often inability to control and express one’s feelings. When a person is no longer able to articulate himself, there’s an inclination to assume that his feelings are as vague as his expressions. Not so! As a matter of fact, a recent study at the University of Iowa has demonstrated that feelings linger much longer with a person with Alzheimer’s than with the “normal” control group and they tend to remain intense. It’s also important to note that bad feelings far outlasted good feelings.

"Sadness tended to last a bit longer than happiness, but both emotions lasted well

beyond [the patient's] memory of the films," lead author Justin Feinstein, a student in the graduate programs of neuroscience and psychology, said in a university news release. "With healthy people, you see feelings decay as time goes on. In two patients, the feelings didn't decay; in fact, their sadness lingered."

For several years I explored the city with a group of friends who were all living with Alzheimer’s. We would picnic at the river, go to the movies, explore galleries, or read poetry in the Rose Garden. These outings were very successful, judging by the happy chatter on the way home. By dinnertime the particulars of the adventures would be forgotten, but the mood stayed upbeat and joyful. Once in a while a family member would wonder why I bothered going through all that trouble, since her Mom never remembered anyway.

I’d explain that it wasn’t about remembering, but rather the good feelings brought on by the experience. The memory might not last, but feelings would linger.

Don’t Argue or Admonish

As caregivers and family members we have a lot more control than most of us realize over situations and interactions with those in our care. People with Alzheimer’s tend to react rather than be proactive. When they are agitated or aggressive, it’s safe to assume that there’s a good reason the “difficult behavior.” In my experience, most “behavior problems” come from our attitude and communication as caregivers.

I’ve put “difficult behavior” and “behavior problems” in quotation marks, because I consider both terms judgmental on the part of the caregiver. Let’s face it: a person with Alzheimer’s or another dementia has growing problems finding the right words to express himself and may need to resort to an outburst that we may interpret as “difficult behavior” to get his point across.

If you’re caring for someone with whom you’ve had a long-term relationship, such as a parent or a spouse, there are sensitive issues between you going back years and it’s often second nature to push each other’s “buttons.” We’ve all been there: the argument that’s going nowhere and we go on autopilot and push one of those “buttons.” The autopilot may still be working for a demented person, even if he’s no longer really aware of what he’s saying. Before you know it, a simple argument has escalated into a major crisis of prolonged emotionally distressing situation that will continue to affect your interactions, long after you’ve both forgotten the issue of the disagreement. You’ll be able to shake off your anger, but he’ll need your deliberate intervention to change his frame of mind into a positive and happy state.

It’s not about scoring points, but rather about keeping the peace. The control is yours. To make your own life easier, you’ll want to turn his mood around. If left alone, his anger and distress can last for hours.

What NOT to do:

He says, “I’m hungry.”

You say, “You just ate.”

He says, “No, I didn’t. I’m hungry. You just want me to starve. You never cared about me. You want me to die.”

You say, “What are you saying? I work and slave for you all day. I cook you

nutritious meals and half of the time you won’t eat them. - - - You just ate, so go in there and watch TV.”

This back and forth can go on and on. You’re emotionally drained and he feels rejected. You can will yourself to escape your feelings; however he can’t do so without your support.

Instead try this:

He says, “I’m hungry.”

You say, “I’m right in the middle of something. Could you hang on for a few minutes?” (You’re not denying or contradicting.)

He says, “I’m hungry. You just want me to starve. You never cared about me. You

want me to die.”

You say, “I don’t want you to die. I’m so glad you’re here with me. Maybe you can help me with something. Then I’ll get done faster.”

At that point, reach for one of your fiddle boxes* and ask him to help you straighten it out. It’s important that your attitude and tone tell him that this is a genuine request.

Regardless of what he chooses to do with the fiddle box, thank him for helping you.

*Fiddle box: A box with an assortment of stuff. Stuff can include, but not be limited

to: Ribbons, plastic doodads, pvc parts, teaspoons, magnifying glasses, measuring

spoons, fabric swatches, old postcards.