Date: July 1st, 2008
The role of caregiver for a loved one diagnosed with Alzheimer’s disease can be a stressful one. Caring for someone with a memory-related disease is more stressful than helping someone with a physical injury. Due to the demands of caring for someone with Alzheimer’s, caregivers tend to neglect their own health care and well-being. One study shows that up to 47 percent of family caregivers experience depression, but with the right resources, caregivers can successfully balance their time and provide the care their loved ones need.
To help caregivers cope with the stress and demands of their role, the Alliance for Aging Research developed the Alzheimer’s Disease: Helping Yourself Help A Loved One kit. The kit features the Caregiver Resource Brochure with information about caring for oneself, the Caregiver Workbook with help dealing with issues and making the most of one’s time, and a DVD with stories from a family facing the disease. These resources are part of a larger workshop kit produced for community leaders.
The video focuses on Bill Diamond and his family as they cope with his battle with Alzheimer’s. Bill is in the early stages of the disease and can remember events from years ago but struggles with recalling short-term information and becomes disoriented often. As the disease progresses, his wife Shirley will face increasing stress and responsibility.
“The usual warning signs of caregiver stress are, ‘number one,’ feeling like you’re not yourself anymore, not liking the person you’ve become, feeling depressed, or just not taking pleasure in any aspect of your life the way you used to,” says Lisa P. Gwyther, a social work educator and family caregiver issue expert from Duke University, who is featured in the video.
The materials include advice to caregivers about how to maintain their own health and their relationships with loved ones. Exercising regularly is the most important thing you can do. Shirley Diamond gets her exercise by participating in a dance group. In addition to exercising, being open about the disease is another strategy to becoming a healthy caregiver.
“We have to talk about this; we can’t pretend it’s not there. We have to talk about it, and we do,” says Shirley.
While the video offers several pieces of practical advice, Gwyther points out the three most commonly stated ways to manage the role of caregiver.
“Caregivers will tell you…‘I get by with a sense of humor, the grace of God, and old-fashioned ingenuity,’” says Gwyther. “We’ve done all sorts of studies in caregiving, and those are the three things that come up the most.”
The workbook includes information and tools to prepare for doctor’s appointments, make an individual’s home safe for the family member, organize legal and financial information, and care for oneself. The workbook makes it easier for caregivers to stay organized and be efficient time managers. The book offers suggestions, but it can be personalized to best fit an individual and his or her loved one. Blank copies of a health journal, a health care appointment form and a medication list are provided in the workbook. Copies can also be found at the Alliance website at www.agingresearch.org. To order a free copy of the workshop kit, call 202-293-2856 or e-mail [email protected].
In addition, The Family Caregiver Alliance’s National Center on Caregiving provides information on state and national policy initiatives aimed at helping caregivers ease the financial and emotional burden of their new role, through publicly-funded support programs. You can also check out the Family Caregiver Alliance for a state-by-state guide to community resources.