Duke Aging Center Book Helps Alzheimer's Care Givers Handle Anger
DURHAM, N.C. -- There's a hidden burden that comes with caring for someone with Alzheimer's disease: anger. To help care givers understand and manage the emotion, the staff of Duke University's Center for Aging Family Support Program have written a short book, Pressure Points: Alzheimer's and Anger.
People had been approaching family support staff privately to discuss their fear and shame about being angry at someone who can't do anything about their condition, said Lisa Gwyther, an associate clinical professor and director of the family support program. At workshops for families or professionals, the topic would surface outside the group setting.
"Either the patient was getting mad or the family was getting mad, and many health professionals expressed concern about the potential for abuse going either way," Gwyther said. "But it seemed like no one really wanted to talk about it (in public). They didn't want to be misunderstood: 'Yes, I love my husband, but he drives me crazy.' 'How can I get so angry with my mother when she's so helpless?'"
Edna Ballard, a social worker with the Duke program, decided to take the issue public about a year and a half ago. She did a presentation on anger for one of the two support groups she facilitates. The unusually large turnout told Ballard she was right, that "this is a wake-up call, this is something we need to pay attention to." Using funds from a state Division of Aging grant, Ballard and Gwyther began developing ideas for a book.
"Care givers are reluctant to admit that they feel anger. We've been taught we shouldn't be angry with someone who's dependent on us," said Ballard, adding that women especially seem to view their anger as taboo. "We've been taught that anger's 'not ladylike,' not a good thing to show, yet anger is a normal, healthy emotion; the question is how to handle it in a constructive way."
With Ballard taking the lead, the team agreed on the book's approach. Care givers are swamped with responsibility and have little time to read, they reasoned, so the material had to be presented in a way that would appeal to their target audience. The book needed to be short, contain situations that care givers could recognize and provide information they could absorb. They decided that first-person narratives best illustrate a range of ways to adapt and cope with anger. They sought permission from care givers to include diary entries, e-mail support group comments, letters submitted to publications. They carefully wove insight from professionals between the narratives.
The 70-page soft-cover book, produced through Duke Health System's publications office, opens with a poem by Emily Albera, whose experience with Alzheimer's disease began nearly 11 years ago when she began caring for her mother.
For three years following her mother's diagnosis of dementia, Albera struggled with her feelings. Albera, who teaches English at a community college in eastern North Carolina, found that her mother reflected Albera's emotion. She realized it was up to her to relieve the strain in the relationship ("I had to change - she couldn't," the poem says) and discovered a simple solution: If she is nice, her mother is nice.
Now Albera recommends Pressure Points to friends new to the care-giving role.
"It had information in it that I could relate to. I've ordered another one and given the copy I had to a friend. He's been asking, 'Why is all this happening?' I told him, 'I have the perfect book for you.'"
The book covers topics such as risk factors for anger, drawing boundaries, tips for maintaining control, options for when the patient gets angry and guidelines for professionals, as well as a suggested reading list and other resources for information on Alzheimer's disease and handling anger. Readers can scan a page or two -- sometimes that's all the time or energy they have -- and grasp something that may hit home, Gwyther said.
Now in its second printing, the book made its debut in February, when the team gave away copies of Pressure Points at the 14th annual Bryan Alzheimer's Center Conference for professional and family care givers. Olga Kosanin found the book so impressive that she recently purchased 100 copies for the nursing staff at the New York Alzheimer's facility where her mother is a resident.
"I think professional care givers can benefit from (the book) as well. They too need encouragement and support," Kosanin said. Another recipient on her list, the director of training at the Alzheimer's Association in New York City, has already ordered more copies for her clients, she added.
A copy of Pressure Points can be purchased for $8. Send a check with the order to the Duke Family Support Program, Box 3600 DUMC, Durham NC 27710, or call toll-free in North Carolina at (800) 672-4213. E-mail queries can be sent to firstname.lastname@example.org.