Alzheimer's Disease Information

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Alzheimer's Disease: More than Just Memory Loss

If you or someone close to you has Alzheimer's disease, chances are you're asking questions about the condition faster than your doctor can answer them. The Internet gives you access to information, outside of office hours, that enables you to find quick answers to urgent questions, and also helps you ask doctors, nurses, or other healthcare professionals the right questions. For a Spanish-language version of the Guide, click here.

Alzheimer's Disease Information

Alzheimer's is more than just memory loss; it's a disease that robs your body of its functions, bit by bit. In this section, you'll find links to Web sites that help you understand the disease, its progress, and how it affects not only the patient but friends and family as well. For a Spanish-language version of the Guide, click here.

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  • If you're going to look beyond the sites we've suggested, it's essential to read the "about us" section of a site to ensure that the information you're getting is from a credible source.
  • Web sites vary in the types of resources they offer, so you should know what kind of information you're looking for before you start. For example, some sites are primarily directed toward people who live with advanced Alzheimer's, whereas others may be directed at people in the early stages of the disease.
  • Once you find a site that you like and find useful, check for sites that it recommends. Usually listed as "additional sources" or "external links," these can provide you with another path to follow.

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Alzheimer's Treatment

Although there is no known cure for Alzheimer's disease, research is ongoing and scientists have begun to find ways to slow down the disease's progress in some people. As a patient, there are steps you can take to both enhance your quality of life and prepare for the future. In this section, you can find sites that discuss the different types of treatments that are available and advice about lifestyle changes, such as exercising, that may slow progression of the disease.

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  • Doctors and scientists are continuously making research developments, and keeping up with their progress is a good way for you to keep up your morale. Don't be discouraged if a certain treatment isn't available now, rather stay interested and invested in the activities of researchers.
  • For more information on research, visit the "Alzheimer's Research and News" section of this guide.

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I Have Alzheimer's

With the right information and support, you can learn how to live with Alzheimer's and prepare for the future. In this section, you'll find newsletters you can read to stay informed, and message boards and forums you can join to connect with other patients or caregivers. A combination of knowledge and community can help to provide the much-needed support one needs to face the life changes brought on by Alzheimer's.

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  • Take advantage of the newsletters and message boards that many of the Alzheimer's associations offer. They're a good way for you to learn through others' experiences, to benefit from the questions others ask, and even post some of your own.
  • In addition to reading information on Alzheimer's Association sites, explore sites of research centers at colleges and universities. Many post press releases that can give you greater understanding of how the disease may affect you.
  • Your doctor is the one who knows best what's going on with your body and your illness. Doing independent research will enhance the value of your conversations with her, but she's still the one to look to for definitive answers.

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Alzheimer's Caregivers

Taking care of someone with Alzheimer's disease can be hard and even lonely sometimes. There are many sites on the Web that can give you the information and support you need to be able to continue caring for your loved one, and also to continue living your own life. These sites can provide advice on how to find respite care and support, how to work your way through the financial maze, and how to keep your loved one safe. Message boards are a great way to communicate with others who are experiencing the same challenges you are.

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  • You can get a lot of support from the various Alzheimer's associations, both local and national. Not only can you get basic information, but you can also look to message boards and newsletters for advice and support.
  • If you have a question that's not answered on a Web site, look for a "Contact Us" section. The staff may be able to answer questions that are not addressed on the site.

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Alzheimer's Help

Unless you have training in healthcare or you have been prepared to care for someone with Alzheimer's disease, you may need extra help. The tasks are numerous and feedback or appreciation can be hard to come by. It's important for you to know when and where to turn for assistance.

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  • Alzheimer's associations, both local and national, are often the best places to start when looking for help.
  • Do your research on how to find care well before you actually anticipate needing assistance. When a situation arises, you may have to make a decision quickly and won't have time to carefully contemplate your options.

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Alzheimer's Research and News

Researchers from all over the world are working on solving the Alzheimer's riddle, and the Internet offers you many ways to keep up with the progress. You'll find preliminary results indicating promising discoveries that may lead to treatments in future years, as well as breakthroughs in new medications that are currently available or coming soon. As scientists gain a more thorough understanding of Alzheimer's, using the Internet to stay informed and up-to-date on the latest research is one of the best tools you have to cope with the disease.

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  • Universities and other institutions that conduct their own studies are usually the best sources for the newest in Alzheimer's disease research.
  • Many news stories are published in association newsletters. To be sure you get the latest news, you may want to sign up for a newsletter mailing list or RSS feed, if available.
  • Alzheimer's disease attracts a lot of attention among researchers so there are usually several studies going on at the same time. Medical and scientific journals usually publish these findings or discuss some of the results. There are also some journals dedicated to Alzheimer's disease and other neurological disorders.
  • If you want to contribute to the search for a cure and help yourself at the same time, consider getting involved with a study. For a list of current studies, including ones that are recruiting patients, this Web site, sponsored by the U.S. government, tracks clinical trials for each disease.
  • It's important to sift your way through the news that can help you now and the research that will only be valuable in the future.

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Explaining Alzheimer's Disease to Children

It's important for your children to realize why Grandma, Grandpa, or the beloved lady next door is acting differently. Most children will be receptive to a clear and informed explanation, tailored to their understanding. If they are taught about Alzheimer's and methods of coping, they can usually be counted on to respond maturely. Furthermore, children have vivid imaginations and without proper explanations, they may come up with their own explanations or reasons for the changes they are seeing. To prevent self-blame, misunderstandings, or fear, take the time to discuss this issue. The more children understand, the less they have to fear.

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  • Associations are often your best bet in helping children learn about Alzheimer's disease. They provide information in a clear, practical manner so that you can relay information to your children in basic terms.
  • Local association chapters can be very helpful in suggesting strategies to guide your children, such as activities you can do together to facilitate their understanding and healing.

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Alzheimer's Support

Having Alzheimer's disease or looking after a loved one with it can become isolating as the disease progresses and care becomes more involved. The Web is a great place to connect with others who are in similar situations. Whether the person on the other end of the computer is in Alaska or Alabama doesn't matter; what matters are the connections, the understanding, and the peer-to-peer advice that you can share.

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  • Check with the national associations and your local chapters to find if there are message boards, support groups, or e-mail news lists that you can join. Although not designated support sites, they are reliable ways to share questions and concerns.
  • To read more information on support for caregivers, look back to the "Alzheimer's Caregivers" section of this guide.
  • Blogs are another valuable way to share in other's experiences. Not only can you benefit from a blogger's insight, you can also usually comment on entries.

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