The challenge of never being alone

Caring for a person with Alzheimer’s disease at home is a difficult task and can become overwhelming at times. Each day brings new challenges as the caregiver copes with changing levels of ability and new patterns of behavior. Research by the National Institutes of Health’s National Institute on Aging has shown that caregivers themselves often are at increased risk for depression and illness, especially if they do not receive adequate support from family, friends, and the community.

One of the biggest struggles caregivers face is dealing with the difficult behaviors of the person they are caring for. Dressing, bathing, eating—basic activities of daily living—often become difficult to manage for both the person with Alzheimer’s and the caregiver. Having a plan for getting through the day can help caregivers cope. Many caregivers have found it helpful to use strategies for dealing with difficult behaviors and stressful situations. Through trial and error you will find that some of the following tips work, while others do not. Each person with Alzheimer’s is unique and will respond differently, and each person changes over the course of the disease. Do the best you can, and remind yourself to take breaks.

For many caregivers of loved ones with Alzheimer’s, there comes a time when the loved one almost seems to be their shadow. As the caregiver moves around the house or apartment, the loved one stays right alongside. Even finding “alone time” in the bathroom can prove to be a real challenge. Having separate bedrooms is a thing of the past.

A Difficult Behavior

We all know that caring for someone who has Alzheimer’s can be stressful and sometimes overwhelming. But when shadowing starts to occur, the experience can be virtually suffocating.

Shadowing is often more frequent in late afternoon or early evening, like another Alzheimer’s behavior called “sundowning”—an increase in a patient’s confusion, anxiety, agitation and sleeplessness.

“In people with Alzheimer’s, I believe shadowing represents the message of uncertainty, insecurity or fear,” writes Angela Lunde in her Mayo Clinic Alzheimer’s blog. “‘Where am I? What am I doing here? What am I supposed 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.”

Lunde is a dementia education specialist in the education core of Mayo Clinic’s Alzheimer’s Research Center at the Abigail Van Buren Alzheimer’s Research Clinic in Rochester, Minn. Read her Alzheimer’s blog at www.mayoclinic.org/diseases-conditions/alzheimersdisease/expert-blog/CON-20023871.

“Shadowing” can be addressed by offering reassurance to the loved one with Alzheimer’s.
“Shadowing” can be addressed by offering reassurance to the loved one with Alzheimer’s.

What to Do?

“Persons living with dementia may express a need or concern in many ways,” she states. “We can often uncover the underlying message behind the behavior or the emotion. I believe shadowing is an expression of that fear.”

“Fear is a constant companion of the person with dementia,” states Lunde. “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,” states Lunde, “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 from Lunde about handling shadowing behavior:

• 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 audiotape 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 or DVD can be created. Remember, persons with dementia forget recent events, so you can play this audiotape or videotape again and again if it proves to be comforting. Familiar movies or music is another option. ■