Alzheimer's blog

Fear drives shadowing of Alzheimer's caregivers

By Angela Lunde May 17, 2011

I received a message the other day from a gentleman who said that in his support group the issue of "shadowing" comes up frequently. Shadowing is when the person with dementia attempts to keep his or her caregiver in their sight at all times, following them like a small child would his or her parent. Shadowing can have the Alzheimer's caregiver feeling smothered and their personal space feeling violated.

Let's first try to understand this behavior. It's imperative to understand that changing and challenging behaviors are symptoms of Alzheimer's (and related dementias). You've heard me say on previous blog posts, "Blame the disease, not the person." Also, it's critical to appreciate that most challenging behaviors have a purpose for the person with Alzheimer's — in other words, there's a message behind their behavior.

In people with Alzheimer's, I believe shadowing represents the message of uncertainty, insecurity or fear.  "Where am I? What am I doing here? What am I suppose to do?  Where am I supposed to go?  Do I know you?" Consequently, caregivers represent a lifeline, security, a protector, and an anchor to oneself.

Like most challenging behaviors in dementia, there are no easy answers.  We can't change or control the disease or the symptoms that it creates.  We can, however, accommodate for the behavior. In shadowing, we accommodate by addressing the emotion behind the behavior — fear.

Fear is a constant companion of the person with dementia. Addressing fear can begin by asking yourself this question, "What can I do or say (or not say) to the person with Alzheimer's that will offer them reassurance and a sense of contentment?"

In general, people with Alzheimer's  will feel content and safe if they have a predictable daily routine, are engaged in activities that are familiar and uncomplicated, are in an environment that is calm, and receive a daily dose of reassuring messages. Here are some other thoughts:

  • Say reassuring words every day and often, like a mantra — "You are safe. Everything will be OK. It's good that you are here. I love you." Your words should be simply stated, short, and always the same.
  • Another idea is to make an audio tape of your voice (or any reassuring familiar voice).  The tape can be a collection of short and meaningful stories from the person with dementia's past.
  • In similar fashion, a videotape can be created. Remember, persons with dementia forget recent events, so you can play this audio or video tape again and again if it proves to be comforting. Familiar movies or music is another option.

I once heard from a caregiver who was fed up because her husband with Alzheimer's would never give her "alone time" in the bathroom. What worked for her was an egg timer. She would set the egg timer for however long she wanted to be in the bathroom. Her husband came to realize that she would return when the timer went off. He would hold the egg timer and wait. For her — it worked!

But like all ideas in dementia caregiving — what works for one person may not work for another. And what didn't work one day may work beautifully the next.

As always, I welcome your insightful comments, experiences and stories. 

"The oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear is fear of the unknown." — H. P. Lovecraft

May 17, 2011