- With Mayo Clinic health education outreach coordinator
Angela Lunde
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Angela Lunde
Angela Lunde is a dementia education specialist in the education core of Mayo Clinic's Alzheimer's Disease Research Center at the Abigail Van Buren Alzheimer's Disease Research Clinic in Rochester, Minn.
Angela Lunde
The transfer of information about dementias, as well as understanding the need for participation in clinical trials, is an essential component of the education core.
Angela is a member of the Alzheimer's Association board of directors and co-chair of the annual Minnesota Dementia Conference. She is a member of the Dementia Behavior Assessment and Response Team (D-BART), a multidisciplinary outreach service assisting professional and family caregivers in understanding and managing difficult behaviors often present in dementia. She facilitates several support groups, including Memory Club, an early-stage education and support series, and more recently, helped to develop and now deliver Healthy Action to Benefit Independence and Thinking (HABIT), a 10-day cognitive rehab and wellness program for people with mild cognitive impairment.
Angela takes a personal interest in understanding the complex changes that take place within relationships and among families when dementia is present. She is particularly interested in providing innovative and accessible ways for people with dementia and their families to receive information and participate in valuable programs that promote well-being.
"Amid a devastating disease, there are tools, therapies, programs and ways to cope, and it is vital that families are connected to these resources," she says.
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Alzheimer's blog
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May 17, 2011
Fear drives shadowing of Alzheimer's caregivers
By Angela Lunde
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
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