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Website aids caregivers in Alzheimer's
Multimedia website assists with unique challenges
It is estimated that Alzheimer's disease affects 5.3 million Americans, making it difficult for them to function in some very simple, ordinary ways. Yet families are often caught off guard when the diagnosis is made, for they cannot imagine how the behavior of a loved one is altered as the disease progresses.
You can't imagine that your mother, who has been an excellent cook all her life, would forget to take the food out of a plastic container and put it in a pan to heat it, but would put the container on the stove and light a flame beneath it, says Rosemary Bakker, MS, ASID, research associate in gerontologic design in medicine in the Division of Geriatrics and Gerontology at Weill Cornell Medical College in New York City.
"There are a lot of missing pieces of information that are not processed or received by the person with Alzheimer's, so it can be daunting. You are not prepared for it," she adds.
Bakker has spent four years creating ThisCaringHome.org, an interactive, multimedia website for caregivers of Alzheimer's and other dementia patients. The website features videos, animations and photographs, and reviews of home furnishings and technology.
It is a valuable tool for educating caregivers and a resource for patient education managers and other health care providers who treat patients with dementia, says Bakker.
Caring for people with dementia is very different from caring for people going through the normal aging process, she adds.
To determine what to include on the website, Bakker relied on her own experience as a caregiver for 15 years to her mother, who had Alzheimer's. She also relied on her training as a gerontologist and interior designer, as well as her work with hundreds of family members at an assisted living facility for people with dementia and Alzheimer's.
In addition, she held focus groups in New York, Seattle, Texas, and Florida and asked her advisory board for input. Also, she did an extensive literature review to find out what some of the unmet needs were for those who cared for a family member with dementia.
The goal for families with loved ones who have Alzheimer's or dementia is to keep them in the home for as long as possible as the disease progresses and help them have a life worth living, explains Bakker.
Therefore, safety is one of the most important factors to address. Yet Bakker found during her caregiver experience that home safety checklists were mostly in text, and the concepts were difficult to understand without photos or illustrations.
"I wanted to create a visual website. I have hundreds of images on my website for fast, easy comprehension," says Bakker.
There is also help with the decision-making process, for the key to ensuring quality of life for people with Alzheimer's is to make changes at the appropriate time while thinking ahead to the future and what it might hold. Making lifestyle changes to match the stage of a person's disease can be a complex process, and many factors contribute to the complexity.
Caregivers must be vigilant about observing where changes are occurring so they can intercede at the right moment. For example, a person in the beginning stages of Alzheimer's would not need to have the cabinet with the cleaning supplies locked to keep him or her from ingesting the products. In fact, intervening too early can cause the person to lose the ability to complete a function.
Staging appropriate interventions is important. For example, in the early stages, reminder notes might be helpful. A note on the refrigerator might act as a reminder to take medications, and a note on the front door could prompt a person to turn off the stove before leaving the house or the handle for the hot water faucet might be wrapped in red to remind the user which knob to turn.
To know what might be appropriate at any given time, caregivers must watch for signs. For example, one woman knew it was time to lock up the sharp knives when her mother tried to crack a walnut with the blade of a large knife.
It is important for caregivers to know that a solution that works for one person with Alzheimer's may not work for another. For example, purchasing an electric tea kettle that automatically turns off may seem to solve the problem of leaving tea kettles on a hot burner. But some people will not be able to learn how to plug the kettle in for a cup of tea, explains Bakker.
"It is very complicated knowing who can do what and who can respond when there are changes in the environment to learn a new way of doing things," she says.
Addressing the issues
Bakker participates in the online forums for ThisCaringHome.org to help people figure out how to address problems.
"I can help them come to a solution or help them try out a few things and refer them to where the information is found on the website. A lot of it is trial and error, but you need to have your toolbox; and caregivers don't have an adequate toolbox," says Bakker.
One helpful tool is insight into how people with Alzheimer's experience the world differently. This helps the caregiver make the appropriate changes to the home. For example, their depth perception is altered, and if the same color tones are used in home décor, everything flattens out and they cannot distinguish objects, such as a brown chair placed on a brown rug. It is important to make sure seating contrasts with the floor, so the person can sit down safely. Or the edge of a step is highlighted with a bright color, so the person can see how high to raise his or her foot, thus reducing falls and increasing the person's ability to function.
People with Alzheimer's or dementia may forget some of the steps for completing a daily activity, such as cooking a meal, and caregivers must watch to see when it is wise to only allow kitchen access under supervision. Patients reach a stage where they forget how to initiate an activity, such as feeding themselves, and placing the spoon in their hand may trigger the long-term memory. They also lose skills and abilities that were once natural. For example, they may put their socks on over their shoes, forgetting the sequence of steps.
Learning what to expect and ways to address the issues is helpful, because families then have the ability to plan ahead and carefully analyze decisions. For example, knowing that people in later stages of Alzheimer's will lose memory of how to walk will help families determine when and if to remodel a home to accommodate a wheelchair. It may not be possible to install a ramp at a home entrance or enlarge a bathroom to accommodate a wheelchair, and alternate plans will need to be made.
There are many products on the market that can help families solve problems, yet there is not always good information available to help people make sound decisions. This was a problem Bakker struggled with during the period of time she cared for her mother, so the website has details about products. For example, she found safety covers for stove knobs only worked on newer models, and with older stoves the covers actually caught the knob and turned the burner on rather than preventing the use of the stove.
Bakker also included more than 50 links to information the Alzheimer's Association has that either supplements her work or is out of her area of expertise but would be helpful to have available on the site.
"I wanted ThisCaringHome.org to be a little bit of one-stop shopping," explains Bakker.
For more information about ThisCaringHome.org, contact:
Rosemary Bakker, MS, ASID, Research Associate in Gerontologic Design in Medicine, Division of Geriatrics and Gerontology, Weill Cornell Medical College, New York, New York. E-mail: firstname.lastname@example.org.