Elsa lives in an assisted living facility. She is calm and happy in the morning, but gets anxious later in the day.
In the late afternoon, Elsa paces the halls, mumbling to herself and wringing her hands. She approaches a staff member who is busy administering medication.”Have you seen my daddy?”
The caregiver answers her question in a kind voice, “Elsa, I haven’t seen your daddy. Why don’t you go lie down and rest, or watch TV for a while?”
Elsa, chanting softly, shuffles away.
Minutes later, Elsa is back. She is rocking back and forth and pulling on the edges of her shirt, “Where’s my daddy? Where’s daddy?”
The caregiver responds again, this time a little more annoyed, “Elsa, go sit down. It’s almost time for dinner.”
Elsa starts to fiddle with things on the medicine cart. She reaches for the stacks of cups and knocks them over. The caregiver turns to her and says in a stern voice, “Elsa, that’s enough. Let’s go watch TV.”
The caregiver walks Elsa to the living room and sits her on the couch. She puts a blanket on her lap and tells her, “Just relax for a little while.” Elsa asks again about her daddy. The caregiver ignores her and walks away.
A little while later, the caregiver sees Elsa going into another resident’s room, still holding the blanket. The caregiver finds Elsa standing near another resident shouting, “Daddy said! My daddy said!”
The caregiver comes up behind Elsa and grabs her by the arm, “Let’s go Elsa. This isn’t your room.”
Elsa pulls her arm away. She starts yelling, “Don’t you tell me what to do! My daddy said. I got to go… daddy said… where’s the…” Elsa’s speech becomes louder and more disjointed. She grips the blanket tightly in one hand and reaches for the other resident’s shoulder with the other.
The caregiver, in trying to protect the other resident, pulls Elsa again by the upper arm. Elsa jerks her arm away and reaches for the caregiver with her other hand. Elsa angrily sinks her fingernails into the caregiver’s skin. The caregiver calls for help, and several other caregivers come into the room and physically push Elsa out of the room.
Elsa is crying and hitting and deeply confused as the caregivers force her to sit on the couch. She is mumbling loudly and rocking back and forth. The staff medicate her as instructed.
There is a conversation going on in Elsa’s head that may or may not have anything to do with her daddy. She has a restless feeling that is upsetting her, and she cannot articulate the cause or cure. Her easiest word comes out first- daddy. Medication should really be a last resort in this scenario. Here are some things to try first:
1. Get her busy. Remember that whenever you feel angry, stressed, or overwhelmed, it is very difficult to sit still. Most of us find an outlet for the stress. We clean, exercise, tinker, drive… we get active as a way to blow off steam. Elsa is looking for an outlet for her anxiety. Get her moving. If Elsa were at home, she might channel that anxiety into scrubbing the kitchen floor. Or walking the dog. Or even venting to a friend or neighbor. The caregiver should try to find an outlet for her. Does Elsa want the cups on the medicine cart? Then place a few around the room and have her go pick them up. Throw some balled up paper towels around on the floor and have her walk around and pick them up. Give her towels to fold or tables to wipe. Put on music and dance!
2. Validate. Elsa does not need soothing words that sugar coat the underlying problem. Think about how you feel when you are really ticked off- how effective do you find the words, “Just calm down”? Words are meaningless to someone who has language deficits coupled with confusion. She needs to see that you recognize her discomfort. Show this through eye contact, a concerned and compassionate expression, and firm reassurance that all is well.
3. Break bread. Another thing we do when we are stressed is eat… comfort food… with people. Sometimes we eat in solitude, but there is comfort in the human bonding experience of a shared meal. Sit down with Elsa and have a cookie.
4. What are her hands telling you? As someone with dementia begins to lose language, their sense of touch becomes the primary way of interacting with the world. Things that can’t be named gain meaning when they can be touched. Elsa is fiddling with her clothes. She is reaching for the cups. She is clutching the blanket. Her hands are craving some sensory input. Fill the sink with soapy warm water and let her wash a dish. Or give her a box of junk to rummage through. Or a busy apron. Or a deck of cards… when her hands find something to that makes sense, her anxiety may diminish.
5. Hugs not drugs. Humans bond through touch. Firm hugs and pressure to the body’s “safe zones” including the upper back, upper arm, and lower thigh help a person feel more secure and convey a feeling of trust.
The bottom line: Expect the behavior and have a plan. People with dementia are frequently anxious. It is easier to prepare for it and manage it at lower intensity levels than waiting until the lid blows off the pot. The reality of managing anxiety through activity is exhausting and constant, and a little pill might be a quick answer to a peaceful evening. But there are other alternatives. Our friends with dementia lack the cognitive ability to employ healthy coping strategies, so it is up the caregiver to offer those options.
As always, keep up the great work Caregivers!