With AD affecting more than 4 million people in the United States (Alzheimer's Association, 2002;Geriatric Resources, Inc., 2002) the nurse must be current on the latest advances and management strategies to provide teaching and guidance.
The following Web sites provide nurses and lay caregivers current Internet AD resources related to general, caregiver, and professional information as well as other tools.
General Information
Alzheimer's Association
http://www.alz.org
The Alzheimer's Association Web site is a primary source of information on AD and related dementias. Major sections such as "I Have Alzheimer's," "Family Caregivers," and "Physicians and Care Professionals," provide resources for these specific groups.
The "Resource Center," offers a host of fact sheets, downloadable PDF files, and links to associations and other available community and Internet resources on treatment, caregiving, training, and special programs. There are non-English language materials and discussion groups as well as a toll-free number to Association specialists and care consultants to answer a variety of questions 24 hours a day.
Alzheimer's Disease: Facts about Alzheimer's Disease
http://www.geriatric-resources.com/html/alzheimer_s_disease.html
Geriatric Resources, Inc. provides AD information for the professional and family caregiver. Notable are the full-texts and guidelines for three commonly used diagnostic tools: Global Deterioration Scale (GDS), Brief Cognitive Rating Scale (BCRS), and Functional Assessment Staging Test (FAST). A one-page summary of the prevalence and course of AD-including statistics, causes, assessments, and links to full descriptions of related dementias is included.
Alzheimer's Disease, MEDLINEplus Health Information
http://www.nlm.nih.gov/medlineplus/alzheimersdisease.html
An all-in-one search site by the National Library of Medicine, this page is a portal to various important resources. Contributors include the Alzheimer's Association, the Mayo Clinic, and the National Institutes of Health. In addition to common disease concerns, sections on news, organizations, statistics, a glossary of dementia terms, and help for children and teens are noteworthy. The site also links to 10 research sites and to the online newsletter Advances.
Alzheimer's Disease: Unraveling the Mystery
http://www.alzheimers.org/unravel.html
Although originally published in 1995, this online booklet by the National Institute on Aging remains a current source for both basic and technical information. With numerous illustrations, it includes the basics of AD and a thorough review of the known causes and disease theories. It also covers research on diagnosis and symptom management, and includes a glossary and an extensive list of references.
Caregiving
Alzheimer's Disease and Diet: Understanding Eating Behaviors of Alzheimer's Victims
http://www.usc.edu/dept/gero/nutrition/alz.shtml
This site, by the University of Southern California, Leonard Davis School of Gerontology, correlates the stages of AD with nutritional status in an easy-to-read format. The physiological and psychological causes of eating difficulties and their management are outlined, including chewing, choking, and over- and undereating. It provides excellent background information on eating behaviors, and offers practical solutions to improving diet in persons with AD.
Caregiver's Handbook
http://www.biostat.wustl.edu/ALZHEIMER/care.html
Although this handbook by the Case Management Services of the San Diego County Mental Health Services is not specific to AD, it is applicable to the needs of the AD caregiver and is copyright free, making it an excellent tool for teaching and learning. The focus is on caregiver stress, but includes many pointers on caring for a loved one. The common problems in caregiving and types of help available are highlighted, as are checklists and caregiver self-assessment tools.
Caregiving Tips from the Perspective of the Person with Dementia
http://www.alznsw.asn.au/library/tips.htm
Christine Boden, an author with AD, offers 19 practical tips on how caregivers can help minimize the frustrations caused by disease symptoms. Included are suggested techniques on concentration, confusion, speaking, noise, children, personal involvement, games and memory aids, and the proper way to address a person with AD.
Caring for the Patient with Dementia
http://james.psych.umn.edu/grecc/caring.htm
The informational pamphlets presented by the Geriatric Research and Clinical Center (GRECC) Minnesota contain careful discussions on a variety of topics not easily found elsewhere. For example, practical advice on dealing with healthcare bureaucracies and developing skills of observation are presented. Techniques for handling a loved one's decline and special communication tips are offered, including advice for hearing and vision problems. The site sensitively covers bowel and urinary incontinence, and other care topics.
ElderCare Online's Alzheimer and Dementia Care Channel
http://www.ec-online.net/alzchannel.htm
Praised for its comprehensive handling of Alzheimer information, the ElderCare Online site features an extensive list of thoughtful articles about AD, dementia, and caregiving. The "Knowledge" section covers the medical aspects of dementia and behavior management techniques including a lengthy list of caregiving tips and solutions to caregiver stress. The column, by a featured author, provides practical advice on a variety of sensitive topics. The "Skill Builders" section provides a solid resource for teaching and learning. The site also includes a news section and chat room.
Mayo Clinic Alzheimer's Center
http://www.mayoclinic.com/home?id=3.1.2
The MayoClinic.com Web site can be a primary source of AD information for all audiences. Its "Find Information" section contains detailed articles about AD and disease management. In addition to common topics are subjects that include early diagnosis/early-onset and nonpermanent memory loss. Visitors can find tips on holiday planning, and ways to help the family caregivers. This site furnishes interactive caregiver stress tools, caregiving tips, and a free e-mail update service. Of note are unique feature articles on how to stay emotionally connected to a loved one and understanding what it is like to have AD.
The Rush Manual for Caregivers
http://www.rush.edu/patients/radc/resources/manual.html
Written for family caregivers, this online detailed manual (in PDF format) by the Rush Alzheimer's Disease Center describes AD and other dementias, diagnosis, treatment, and research, and in 30 chapters outlines caregiving techniques. Topics include communication, safety, intimacy, coping, spirituality legal matters, traveling, driving, hygiene, and incontinence.
For Professionals
Alzheimer Research Forum
http://www.alzforum.org
A digest of AD information and research aids for healthcare professionals, researchers, and the general public, the site includes news, research abstracts, discussion forums, support group resources, and conferences. The Diagnosis and Treatment sections provide detailed information on clinical guidelines, the medical workup, drugs (those currently approved by the FDA, over-the-counter complimentary medicines, and those in clinical trials), and nonpharmacological therapies. The site also maintains unique resources related to current hypotheses, clinical research tools, interviews, and brain banks.
Best Practice of Medicine
http://merck.praxis.md/bpm/bpm.asp?page=BPM01NE09
Merck & Company, Inc. sponsors a collection of evidence-based treatment guidelines from Praxis MD, Medical College of Cornell University on this Web site. The pages on dementia provide diagnosis and treatment guidelines in brief and full formats that are linked to research abstracts, tables, and commentaries.
The diagnosis section covers patient history, physical exam, laboratory testing, and other diagnostic criteria. The treatment component details drug therapies, complications, lifestyle measures, when to consult with a patient and when to refer, and patient education.
Guidelines for Alzheimer's Disease Management
http://www.alzla.org/medical/index.html
This site, by the California Workgroup on Guidelines for Alzheimer's Disease Management is intended for a wide variety of healthcare professionals. The site furnishes national AD clinical practice guidelines. A two-page general guide provides background information and covers assessment, treatment, patient and caregiver education and support, and the reporting requirements. A 55-page "California Report," provides detailed recommendations for drug therapies and nonpharmacological interventions. Numerous tables and references to research studies accompany the guidelines.
Stages of Alzheimer's Disease
http://www.ec-online.net/Knowledge/articles/alzstages.html
This Web page, by Barry Reisberg, MD; the Center for Aging and Dementia Research, New York University Medical Center; and ElderCare Online, furnishes the Functional Assessment Staging (FAST) scale consisting of 16 stages and substages of AD. The disease characteristics of the stages are described in a chart with brief commentaries. Also furnished is the AD and Skill Abilities chart, comparing the developmental skills acquired by infants and children to the stages in AD, and identifying when the ability is lost.
Other Tools
Alzheimer's Disease Education and Referral Center (ADEAR)
http://www.alzheimers.org
ADEAR, an agency of the federal government, maintains information on AD research, diagnosis, treatment, drugs, clinical trials, and government programs and resources. The "Information and Referral" link provides a toll-free number to an information specialist who can answer questions.
The Combined Health Information Database (CHID) contains references to and abstracts of books, journal articles, brochures, fact sheets, and audiovisuals, among other material. CHID includes the ADEAR Center's collection of more than 6,800 health education materials related to AD, along with subfiles on 15 other health topics.
The site also links to other federal agencies on health and aging, and has a searchable database of government-sponsored clinical trials. Also search http://www.clinicaltrials.gov to find other trials in progress and those recruiting.
The Alzheimer Page
http://www.biostat.wustl.edu/alzheimer
In addition to providing information on the activities and services of the Alzheimer Disease Center, the site by the Washington University, St. Louis, MO, is noted for its active ALZHEIMER e-mail discussion group. Persons with AD, professional and family caregivers, researchers, public policy makers, students, and any person interested can ask and respond to questions, share information, and provide support. The site maintains a list of frequently discussed topics and an archive of all discussions. The site also supplies the Clinical Dementia Rating (CDR) scale in 17 language translations.
Care4ELDERS
http://www.care4elders.com/home.phtml
Eymann Publications, Inc.'s Care4ELDERS furnishes easy-to-understand information for care providers. An electronic version of the print newsletter, Alzheimer's Home Companion, contains practical tips on caregiving; the Monthly Mini Lessons and Activity Director's Guide offers news and insights for administrators and trainers. The concise information, extracted from articles and book chapters, is practical and not easily found elsewhere.
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