Wednesday, March 12, 2008

Important Web Links

I'll be sifting through these and checking them and adding one by one to the links section to the right but wanted to post these us now for those who may need them:


Ageworks - provides graduate and undergraduate education over the Internet, an informational website on aging and continuing educational modules for professionals working in long term care.

American Geriatrics Association - one of the largest professional organization of health care providers. Includes membership, educational and publication information.

American Society on Aging - Enhancing the skills and knowledge of those working with older adults and their families.

Families USA - a national nonprofit, non-partisan organization dedicated to the achievement of high-quality, affordable health and long-term care for Americans. Good information on national healthcare policy.

Gerontological Society of America - multidisciplinary society for professionals in the field of aging. Focuses on promoting the scientific study of aging.

International Longevity Center - a non-profit, non-partisan reseach and education organization helping societies address longevity population aging in postitive productive ways.

Maturity Health Matters - an online newsletter about U.S. Food & Drug Administration (FDA) regulated products for older adults, their families and their caregivers.

National Citizens' Coalition for Nursing Home Reform - a national consumer advocacy group that educates consumers about how to get good care in nursing homes and advocates for policies that will improve conditions for nursing home residents.

National Council on the Aging - help older people remain healthy and independent, find jobs, increase access to benefits programs, and discover meaningful ways to continue contributing to society.

National Institute on Aging - research profiles, funding, health information and publications.

Caregiver Resources

Arch National Respite Network and Resource Center - supports service providers and families through training, technical assistance, evaluation, and research. - articles on caregiving, caregivers, and home care workers.

CARING TODAY - a magazine and website—provides useful advice and how-to articles on range of caregiving topics. - a comprehensive online resource and community for family caregivers.

WellSpouse Foundation - national nonprofit membership organization which gives support to wives, husbands, and partners of the chronically ill and/or disabled.

Directories and Resource Locators

Benefits Checkup - helps thousands every day to find programs for people ages 55 and over that may pay for some of their costs of prescription drugs, health care, utilities, and other essential items or services.

Directory of Web and Gopher Sites on Aging - from the Administration on Aging's Department of Health and Human Services.

Eldercare Locator - a nationwide, directory assistance service designed to help older persons and caregivers locate local support resources for aging Americans to help them remain independent in their own homes. - a palliative care resource created for patients and families that also includes sections for medical practitioners and policymakers. The site is easy to navigate and provides clear, comprehensive palliative care information for people coping with serious, complex illness.

GeroInformatics Workgroup at the Wayne State University's Institute of Gerontology - resource for researchers, educators, practitioners, and others interested in aging and older individuals.

National Academy of Elder Law Attorneys - search for an elder law attorney near you.

National Association of Professional Geriatric Care Managers - a non-profit, professional organization of practitioners whose goal is the advancement of dignified care for the elderly and their families.

Senior Sites - source of non-profit housing and services for seniors.

Disease Specific Organizations


The ALS Association (National) - up-to-date information and education materials on ALS.

Alzheimer's Disease/Dementia

Alzheimer's Association - site with updated research information, chapters, caregiver information and public policy information.

Alzheimer's Disease Education and Referral Center - site with Alzheimer's information, research, and caregiving suggestions.

American Health Assistance Foundation - nonprofit charitable organization that has dedicated over 30 years to funding research on age-related and degenerative diseases, educating the public about these diseases, and providing emergency financial assistance to Alzheimer's disease patients and their caregivers.

Lewy Body Dementia Association - information for patients with Lewy Body Dementia and their caregivers.

Pick's Disease Support Group - articles, support groups, and resources for patients.


National Ataxia Foundation - information about and support for people with ataxia.

Brain Injury

Brain Injury Association of America - national program with a network of more than 40 chartered state affiliates, as well as hundreds of local chapters providing information, education and support to individuals, families and professionals affected by brain injury.

Brain Injury Resource Center - information, skill-building and discussion groups. Extensive links to resources, rehab, and research sites, as well as lay and professional journals.

Defense & Veterans Brain Injury Center - Serves active duty military, their dependents and veterans with traumatic brain injury. Offers evaluation, treatment, follow-up care, educational materials and research.

Tamara Greenspan Head Injury Collection - Free resource library, with many good books on brain injury available through the interlibrary loan system.

The Traumatic Brain Injury Model Systems - created to demonstrate the benefits of a coordinated system of neurotrauma and rehabilitation care and conduct innovative research on all aspects of care for those who sustain traumatic brain injuries.

Brain Tumor/Cancer

American Brain Tumor Association - Provides information about brain tumors, treatment options, clinical trials, and living with a brain tumor.

American Cancer Society - dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering.

CancerCare - resources and information related to costs for caring for those with cancer. - a web resource for people touched by cancer including patients and their families, caregivers and health providers. The site was developed as part of Ortho Biotech's dedication to cancer research and education. was created to facilitate quick and easy searches for cancer information and includes a comprehensive listing of credible cancer web sites. The site content is reviewed and approved by an advisory board of cancer advocates and medical experts.

National Brain Tumor Foundation - non-profit organization serving people whose lives are affected by brain tumors.

National Cancer Institute - official site for the National Institute of Health's principal agency for cancer research. - online resource and community for family caregivers.

Cerebral Palsy

United Cerebral Palsy Association - world's premier gateway to disability resources on the Internet and is a network for people with disabilities,

Creutzfeldt-Jacob Disease

Creutzfeldt-Jacob Disease Foundation - offers support, information and guidance to those dealing with the degenerative neurological disorder CJD.


Epilepsy Foundation of America - serving people with epilepsy and their caregivers through services, information.

HIV/AIDS Dementia

National Prevention Information Network AIDS website -HIV InSite - university-based, global Internet resource on HIV/AIDS that incorporates comprehensive,multidisciplinary information on basic science, treatment, prevention, and policy, and is one of the world’s most visited

HIV/AIDS Web sites.

Huntington's Disease

Hereditary Disease Foundation
Huntington's Disease Society of America, Inc.


Hydrocephalus Association

Multiple Sclerosis

National Multiple Sclerosis Association of America
National Multiple Sclerosis Society

Parkinson's Disease

American Parkinson Disease Association, Inc.
National Parkinson Foundation

Spinal Cord Injury

Christopher Reeves Paralysis Foundation
National Spinal Cord Injury Association


American Heart AssociationNational CenterAmerican Stroke AssociationNational Stroke AssociationNational Institute of Neurological Disorders and Stroke
Tourette's SyndromeTourette's Syndrome Association, Inc.

Other Disease RelatedAlliance of Genetic Support GroupsAmerican Academy of NeurologyAmerican Chronic Pain AssociationHuman Genome Project InformationNational Institute on Deafness and Other Communication Disorders

Elder Abuse
MedlinePlus: Elder Abuse - trusted health information on elder abuse from the U.S. National Libarary of Medicine.National Association for the Prevention of Elder Abuse - information and publications on how to recognize and report elder abuse.National Center on Elder Abuse - offers fact sheets, news, publications, statistics and resources.

Federal Government Agencies
Administration on Aging - aging news, aging pages, funding information, Older American Act programs, statistical information on older adults.Centers for Disease Control and Prevention's National Center for Health Statistics: Aging Activities - an agency of the United States Department of Health and Human Services.Centers for Medicare and Medicaid Services - the federal agency that administers the Medicare, Medicaid and Child Health Insurance Programs.Department of Veterans Affairs - Veterans Administration benefits, facilities, special programs.Food & Drug Administration's Office of Women's Health - science-based information about all products currently approved by the FDA to treat women's health conditions.Social Security Online - information about benefits, Personal Earnings and Benefit Earning Statement.National Institute of Health - Health Information Index, Consumer Health Information, Medline and Grateful Med access, Clinical Alerts.National Institute of Mental Health - provides information from the Federal agency that conducts and supports research on mental illnesses.

Health Resources
Alliance for Health Reform - a nonpartisan, nonprofit group helping educate elected officials, journalists and other shapers of public opinion about the roots of the nation’s health care problems and the trade-offs posed by various proposals for - comprehensive registry of clinical trials for serious illnesses. Sponsored by the National Library of Medicine, the database has 4,000 studies at 47,000 sites across the country.Healthfinder - a mega site for health information sponsored by the Department of Health and Human Services. Excellent links section.MEDLINEplus® - comprehensive coverage of over 600 health topics. Features include: newswire updates, tutorials with sound and pictures, medical encyclopedia, drug information, directories of health facilities and professionals, and more.MedicineNet - information for diseases, treatments, procedures, drugs and more.National Organization for Rare Disorders - a federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases.PubMed - provides access, free of charge, to MEDLINE. Over 40 millionsearches done each month. Includes state-of-the-art retrieval features such as "related articles," links to related databases, and links to publishers' full-text articles.

Legislation and Advocacy
National Governor's Association - bipartisan organization of the nation's governors--promotes visionary state leadership, shares best practices and speaks with a unified voice on national policy.Thomas - federal legislation tracking. Daily updates and full-text bills available.White House's - developed by the U.S. Office of Management and Budget and Federal agencies to assess the performance of every Federal program.White House Citizen's Handbook - a guide to the U.S. government.

Long-term Care
American Association of Homes and Services for the AgingHome Care and Hospice Agency LocatorNational Long Term Care Ombudsman Resource Center

Center for Accessible Technology - provides useful information on various types of technology as well as comparative reviews, and links to other resources.EASI (Equal Access to Software and Information) - provides information on assistive technology as well as links to product information. Virtual Assistive Technology Center - information on resources and also offers downloadable software.BIOTN (The Best Information on the Net) - site developed by librarians at O'Keefe Library at St. Ambrose University. The site offers information on adaptive technology, disability law, organizations and institutes and links to other useful sites.
Computer manufacturers also have sites that offer information on accessible technology. Some of the larger companies include Apple Computer's Disability Resources web site and Microsoft's Accessibility and Disabilities site.
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First Steps for New Caregivers

When you're starting out as a family caregiver, it's hard to know where to begin. Perhaps you've only recently realized that a loved one needs assistance, and is no longer as self-sufficient as he or she once was. Or perhaps there has been a sudden change in a loved one's health.

Now it's time to take action, and take stock of the people, services and information that will help you care for your loved one. The earlier you find support, the better.

Step 1
Start with a diagnosis. If your loved one is forgetful at times or has gone through a noticeable personality change, take him or her to a neurologist or diagnostic clinic. A thorough evaluation will rule out any reversible causes of dementia symptoms, such as depression, nutritional deficiencies, reactions to medication or infection. An early diagnosis of Alzheimer's disease, or another disease that causes cognitive impairment, has many benefits. First, treatment for Alzheimer's disease is most effective in the earlier stages and can buy more independence for your loved one. Second, knowing your loved one's diagnosis can help you plan ahead realistically. Learn as much as you can about your family member's condition. This information will confirm that you are not imagining things or exaggerating your loved one's behavior. Especially when you're dealing with dementia'learning about the diagnosis will help you keep in mind that it's the disease that is causing your loved one to gradually lose control over his or her behavior. Many books, videos and classes are available to inform you about what you can expect as your loved one's disease progresses.
Step 2
Talk with your loved one about his or her finances and health care wishes. If your relative is able to complete a Durable Power of Attorney for finances and health care, assist her or him in meeting with an elderlaw specialist to draw up these documents. This planning can help relieve your immediate anxiety and make you better prepared for the future. It can also start important discussions with your family members. If your loved one doesn't have the capacity to execute these documents, you will need further legal advice to learn about your options.
Step 3
At this stage, consider inviting family and close friends to come together and discuss your loved one's care. If possible, your loved one should be included in the meeting. List the tasks that are needed so they can be more easily divided up. Let everyone discuss their concerns, as well as how much and what kind of help each person can offer. As the primary caregiver, it's best for you to focus on accepting what assistance your friends and family are offering, even if it's not exactly what you had in mind. For more information see the FCA Fact Sheet called Holding a Family Meeting.
Step 4
Take advantage of community resources such as Meals on Wheels and adult day care programs. These resources are available so that you don't have to do everything yourself'and to give you a break. You can also see if there are caregiver classes and workshops offered in your community by calling FCA or your local Caregiver Resource Center or Area Agency on Aging. These education programs will help you feel more confident and make the time you spend caregiving easier for both you and your loved one.
Step 5
After all of this planning, don't forget what's most important: finding support for yourself. Caregivers often feel isolated as they take on more responsibility, and as their social lives move into the background. A support group is a good place to meet other family caregivers who have really "been there". You can attend support groups in your community, as well as through the Internet. Call FCA at (800) 445-8106 to learn about support groups, classes and other services for caregivers in your area, or visit
Source: Family Caregiver Alliance