As we get older, the chance increases that we will become a caregiver for a family member.  Or perhaps, we will have friends who are living with dementia.  Understanding more about ways to help loved ones is an important way to deal with the challenges of this disease.

Challenging interactions: living with dementia

Picture John and Alisha, an older couple, in their living room in the late morning. Alisha was hoping for a quiet read of the paper, which she and John always used to do together at this time of day, trading sections back and forth. But that was before John’s diagnosis of Alzheimer’s Disease.

Meanwhile, John has lost interest in the paper and is wandering around the living room. He starts complaining loudly and angrily that there is only one pillow on the sofa instead of two. “Where did you put the other pillow?” he shouts accusingly, pointing at the empty space on the sofa.

Alisha takes a quick look around the room and sees it on the chair that John was just sitting in. “I didn’t put it anywhere!” she retorts. “It’s right there on your seat. You must have moved it when you were reading the paper.”

“No, I didn’t!” says John. “You know it doesn’t go there!”  John picks up the pillow and throws it back on the sofa.

Alisha pauses and takes a breath. She remembers from her work with the Occupational Therapist (OT) that arguing or reasoning with John is not going to help. He no longer has the ability to scan the environment effectively for the thing he is looking for, his short-term memory impairment has left him with no memory of moving the pillow, and his frustration with his inability to track the stories in the newspaper has left him agitated and looking to pick a fight. John needs the “just-right challenge.”

Dealing with dementia: What is the “just-right challenge?”

Like anyone might be, John is frustrated by activities that are too demanding for his cognitive level and bored by activities that are too simple. In this case, reading the newspaper, while it used to be comforting and intellectually stimulating, is now a torturous exercise in trying to follow stories that just don’t make sense.

Everyone needs activities that are appropriately matched to their cognitive abilities. For someone with normal cognition, a wider range of activities will meet this description. John, however, needs a carefully selected activity to keep him engaged and happy.

John used to take pride in his work in a hardware store, setting up and organizing displays on shelves and in the windows. When he gets angry, it’s usually because something about his environment is in disarray, as he sees it. His dementia makes his life feel out of control and chaotic. Organizing things gives him a sense of purpose and satisfaction.

Thinking back to her conversation with the OT, Alisha decides that her only chance for a quiet morning is to set John up with an activity that speaks to his personality and matches his cognitive level. “You know, John,” she says calmly, “I was looking for a screwdriver yesterday and that toolbox is all a jumble. You’re so good at organizing things.”

She gets up from her paper and retrieves the toolbox from the closet, leading John to the dining room table. “Could you set this to rights for me? That would be so helpful!” John directs all his attention to the problem of the toolbox, as Alisha finishes reading her paper.

Understanding ACL – Allen Cognitive Level

Why did this work?  Alisha knows from her work with the OT that John’s Allen Cognitive Level (ACL) is usually at a 4.0 on a scale of zero to six. She remembers that this means skills like selecting and initiating an appropriate activity, regulating his emotions, and empathizing with her desire to read the paper in peace are all higher-level skills that are out of his grasp.

When someone with dementia is over- or under-challenged, the stress created by this situation uses up their cognitive energy. Sooner or later, their cognitive ability is bound to drop from their baseline as their gas tank gets closer to empty. We often see increased confusion, disorientation, and agitation toward the end of the day (“sundowning”), when cognitive reserves have been depleted all day by the wrong level of challenge.

Elements for meaningful engagement

To create meaningful engagement, two elements must be present:

1. The activity must have meaning to the person. It must fit with their personality and preferences.
2. The demands of the activity must match the person’s cognitive ability.

Organizing the toolbox spoke to John’s history at the hardware store and his natural ability to organize and arrange. There is no wrong way for him to do this.

He can satisfy his own sense of order, giving him control over a small part of his environment and easing the frustrations of disorder and confusion surrounding him.

If his cognitive level had been lower, a better activity might have been simple sorting of nuts and bolts by shape.

Because John is at a level where he can grasp a more complex activity with a beginning, middle, and end, the task of “organizing” works well for him and is not boring or frustrating. He can conceive of why he is doing what he is doing while he is doing it.

Benefits of meaningful engagement

Why is meaningful engagement beneficial for people living with dementia?  If Alisha can keep John engaged throughout the day in activities that create a meaningful “just-right challenge,” his cognitive energy will last longer, and he has a better chance of avoiding sundowning in the evening. His experience of his world will be less frustrating and confusing, making him less argumentative.

All this is ultimately good for both of them, allowing Alisha to read her paper in peace at that moment.  And she can also help avoid other similar challenges throughout the day by using meaningful engagement techniques.

 

Contributed by:

Emily Gavin, MS, OTR/L, CDP

Emily S. Gavin, MS, OTR/L, CDP is a dementia care expert, occupational therapist, and coach, supporting dementia caregivers in the Philadelphia area.

In her private practice, she helps clients understand how their loved ones perceive the world, decreasing the stress and strain in caregiving relationships. She is also available for public speaking engagements. Learn more at www.phillycarecoaching.com, PhillyCare Coaching on Facebook, phillycarecoaching on Instagram, and Emily S. Gavin on LinkedIn.