It is estimated that Alzheimer's disease affects 5.3 million Americans and that number is expected to double by 2050. Caregivers shoulder a particularly heavy burden as the illness alters the dementia patient's behavior, mood and judgment, impeding his or her ability to engage in normal, everyday activities.
In response to this mounting public health challenge, experts at Weill Cornell Medical College have spent four years creating ThisCaringHome.org, an interactive, multimedia Web site for caregivers of Alzheimer's and other dementia patients. The Web site, which received the 2009 e-Healthcare Leadership Award, helps caregivers learn strategies to better care for people with dementia, especially how to adapt the home environment to meet the behavioral and physical needs of people with Alzheimer's.
Created by Rosemary Bakker, M.S., A.S.I.D., research associate in gerontologic design in medicine in the Division of Geriatrics and Gerontology at Weill Cornell Medical College, the site features videos, animations and photographs, as well as expert reviews of home furnishings and smart technologies. Ms. Bakker, a former caregiver to her mother, has put her first-hand knowledge to use in the creation of this Web site.
"Persons with dementia and their caregivers deserve better lives and more help with the everyday challenges they face," Ms. Bakker says. "When I was a caregiver, I learned that people with Alzheimer's experience the world differently than we do. Once you understand this, there is a lot caregivers can do, especially to the home environment, to help the person lead a safer, more functional and fulfilling life. And it makes caregiving less difficult and more rewarding. But without guidance, it's easy to get overwhelmed."
While much has been written about Alzheimer's, this graphics-rich interactive Web site shows how best to adapt a home for persons with Alzheimer's disease and related disorders, enhancing the individual's safety and independence. The 3-D animations, videos and written content illustrate the complex process of changing the home to match the stage of the patient's disease. A social networking component enables caregivers to share information, ask questions, and find support from the online caregiver community.
The Web site takes visitors on a "virtual" visit through every room of a house, demonstrating in detail how to deal with issues that might arise in the kitchen, bathroom, living room and bedroom. Best practices for safe bathing, how to install stove turn-off devices and timers, what lighting is necessary to soothe an agitated person, and what to look for in a door monitoring device, among many other subjects, are addressed.
Other sections include tips for reducing agitated behaviors and improving quality of life for those with dementia, such as playing favorite old songs, receiving an aromatherapy massage, and playing with a docile pet.
While ThisCaringHome.org is geared toward family caregivers, it is also invaluable for physicians, nurses, hospital discharge planners, social workers and assisted-living facility managers, all of whom must increasingly deal with dementia and memory loss among their patients.
"ThisCaringHome.org covers every conceivable subject that may arise for the person caring for the dementia patient," says Dr. Ron Adelman, professor of medicine co-chief of the Division of Geriatrics and Gerontology at Weill Cornell Medical College and director of the Irving Sherwood Wright Center on Aging at NewYork-Presbyterian Hospital/Weill Cornell Medical College. "So often the caregiver feels that he or she is alone or that no one has encountered their particular problem before. The interactive nature of this site, and the very fact that it's visually engaging and easy to navigate, draws people into an extremely informative, online community that can help ease some of the caregiver burden."
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