What to Expect When You’re Caregiving

October 28, 2010

Anyone who has cared for a loved one with Alzheimer’s knows just how stressful and unpredictable the experience can be. Yet most people who care for a family member with the disease have little preparation or experience when they begin their caregiving journey. A new interactive tool from Caring.com, a Web site dedicated to caregiving concerns, aims to ease the process by providing support and advice geared towards the progressive downward course of Alzheimer’s and other types of dementia.

The free program, called Steps & Stages, is an interactive guide that dispenses caregiver guidance customized to the particular stage of Alzheimer’s they are facing. “Caring.com’s Steps & Stages provides clear actions steps tailored to your loved one’s stage of Alzheimer’s,” notes Cory Ryan, Vice President of the Fisher Center for Alzheimer’s Research Foundation. “The action steps guide family caregivers right now, without having to wait days or weeks to get helpful advice.”

At the Web site, at http://www.caring.com/steps-stages/alzheimers, the caregiver first enters the patient’s name, age and family relationship. He or she then checks off a series of boxes about specific symptoms, such as repeating questions or stories, forgetting to fill prescriptions, an inability to remember who just visited, confusing long-ago memories with recent events, and identifying friends and family members.

The program also asks follow-up questions about how often memory lapses and other problems occur, and how well a loved one can handle personal care, like dressing or washing. Mood issues like anger and aggression, a common problem as Alzheimer’s progresses, are also addressed.

The tool then ranks patients according to their stage of illness, be it early, moderate or severe. Each of these stages is, in turn, divided into early, mid and late sub-stages.

A caregiver guide provides specific tips on “What to do” about specific problems, like managing personal care, repeating questions, forgetting appointments or emotional outbursts. Tips on prescription medication errors, for example, include suggestions like setting up automatic refills, arranging for home delivery, using day-of-the-week dispensers, making pill-taking part of the daily routine, and bringing in all medications to doctor’s appointments for a regular “brown bag” review.

Caregivers also have the option of receiving a free e-mail newsletter about what to expect, measures to take, and tips on coping and caring for someone with Alzheimer’s. The tool also includes a community feature called Stage Groups, where caregivers dealing with similar problems can talk to one another and share tips and support.

As new symptoms of Alzheimer’s arise, caregivers can update their Care Guide, and the information and advice changes dynamically. The program was modeled on another popular Web site the creators had developed, BabyCenter.com, which is geared toward new parents.

Research conducted by Caring.com shows that nearly 50 percent of families caring for a loved one with Alzheimer’s do not know what stage of the illness their family member is in. This uncertainty makes it very difficult to make important decisions on a daily basis and properly care for a mother, father or other close friend or relative with Alzheimer’s. For most of the more than 1,100 caregivers the company surveyed, a diagnosis of Alzheimer’s came a year or more after memory loss and other symptoms first appeared.

“Caring.com’s Steps & Stages is geared toward my mom’s stage of Alzheimer’s, so I can get information specific to what I’m experiencing,” said one of the site’s users, Martha Huggart from Raymond, Mississippi. “The tips are very helpful, both in helping me know how to take care of my mom and in reminding me to take care of myself,” she added.

Medical advisors on the site include Leslie Kernisan, M.D., MPH, a practicing geriatrician and clinical instructor at the University of California, San Francisco, geriatrics division, and Ken Robbins, M.D., a geriatric psychiatrist and clinical professor of psychiatry at the University of Wisconsin in Madison. Other experts who provided review include Lisa Gwyther, MSW, associate professor in psychiatry at Duke University Medical Center and coauthor of “The Alzheimer’s Action Plan: A Family Guide.”

The Steps & Stages tool is available on Caring.com at http://www.caring.com/steps-stages/alzheimers, along with the Stage Assessment, Custom Care Guide and weekly e-mail newsletter signup. Additional community and content features are planned in the coming months.

By Alzinfo.org, The Alzheimer’s Information Site. Reviewed by William J. Netzer, Ph.D., Fisher Center for Alzheimer’s Research Foundation at The Rockefeller University.


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