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Home: Disease Management: Caregiving: Patient Care
PATIENT CARE


Updated 26 June 2008

Administration on Aging
Caregiver resources including Eldercare locator, caregiving guides, factsheets, and state and agency listings.

Aging-Parents-and-Elder-Care
Advice, comprehensive checklists, and links to key resources designed to make it easier for caregivers to quickly find the information they need. See link to Prescription Drugs Interactions - HealthAtoZ to view information on drug interactions.

Alzheimermed
This Brazilian web site provides information on diagnosis and treatment along with other information for caregivers. Text in Portugese.

ALZCARE - Alzheimer's Care Home Referral Service, LLC
Free help for families seeking Assisted Living care for seniors with Alzheimer's or other dementia disorders. The AlzCare website also has extensive information on the issues involved in making a care home selection.

Alzheimer’s Association’s Safe Return Program
Information on a nationwide program that assists in the identification and safe, timely return of individuals with Alzheimer’s disease and related dementias.

Alzheimer Disease Bill of Rights
This bill of rights is excerpted from The Best Friends Approach to Alzheimer's Care by Virginia Bell and David Troxel, 1997.

Alzheimer's Disease Education & Referral Center: AD Clinical Trials Q&A
Sponsored by the National Institute on Aging, this site provides information for the public on participating in clinical trials. The site also provides general information on Alzheimer's disease, caregiving, and links to research centers and other clinical trial databases.

Alzheimer's and Exercise
See this monograph by Sharon Arkin, PsyD on the National Center for Physical Activity and Disability's web site.

Alzheimer Forum (German and English)
Detailed information on family and caregiver issues, with much useful advice and observations, from this Berlin-based support network (unrelated to Alzheimer Research Forum).

Alzheimer's, Dementia and Driving
Researchers have developed a first-of-its-kind caregiver's course, "At the Crossroads: The Support Group Kit on Alzheimer's Disease, Dementia and Driving," that will help family members decide when and how individuals with dementia should limit or stop driving.

Alzheimer's Disease Clinical Trials Database
A listing of all NIH-sponsored dementia drug trials. Does not include proprietary compounds. A joint project of the Food and Drug Administration and the National Institute on Aging (NIA) maintained by the NIA's Alzheimer's Disease Education and Referral (ADEAR) Center.

The ALZHEIMER Patient: Weight Loss and Eating Behavior
Information from the European Funded Program on Weight Loss and Eating Behavior in Alzheimer's Patients.

Alzheimer's Research Exchange (ARE)
This site provides up-to-date information on Alzheimer's Disease and related dementia, including current research findings and practical applications for research results. Features searchable researcher/practitioner and publication databases, discussion lists, educational resources and more. Designed for a wide range of users including researchers, practitioners, policy makers, informal caregivers, formal care providers, persons with dementia, students and the public.

Alzheimer Solutions
Range of products available for caregivers, links to journals, research centers, and information on safety and other caregiving concerns.

AlzInfo
See the Fisher Center for Alzheimer's Research Foundation's web site for information on a wide range of topics including mealtime preparation and environmental design.

American Association for Geriatric Psychiatry's Position Statement
Principles of Care for Patients With Dementia Resulting From Alzheimer Disease: Adopted by the Board of Directors of the American Association for Geriatric Psychiatry in September 2005 (Published in the American Journal of Geriatric Psychiatry, July 2006). "There exists currently an effective, systematic care/treatment model for patients with dementia resulting from Alzheimer disease (AD). This consists of a series of therapeutic interventions-pharmacologic and nonpharmacologic-targeted at patients with AD and their caregivers. Although these interventions do not produce a cure of the underlying disease and do not appear to stop its progression, they have been shown to produce benefits for patients and their caregivers.... This document articulates these principles of care."

Assisted Living Directory & Senior News
Search free listings of assisted living facilities across the United States.

Assisted Living Federation of America
Founded in 1990, ALFA represents over 7,000 for-profit and not-for-profit providers of assisted living, continuing care retirement communities, independent living and other forms of housing and services. Site provides a searchable directory of residences, searchable by state, region, city, and personalized needs such as with medical condition Alzheimer disease.

At Home Care Assisted Living Services
This organization provides assisted living services to the Philadelphia and surrounding southeastern Pennsylvania areas. The site includes a national Senior Resource Directory with links and information pertaining to health, prescriptions, care, elder law, financial and insurance related topics. This site also provides a donation service for medical equipment. Eligible persons may be able to receive free medical equipment and caregiver supplies through this service.

BenefitsCheckUp
The National Council on the Aging created BenefitsCheckUp to help older adults to quickly identify programs that may improve the quality of their lives by providing a free, easy-to-use service that identifies federal and state assistance programs, regardless of income, for older Americans.

Columbia Prediction Project
This site assists caregivers in assessing when persons with Alzheimer disease may need nursing home care or die. The technique used to make these estimates is a product of the Predictors Study specifically designed to investigate the natural history of Alzheimer disease.

Caring.com
This website features original content focused exclusively on eldercare and end-of-life matters. Find information on health, daily care, housing, finances, nutrition, legal issues, and other caregiver concerns.

Doctor's Guide: Alzheimer's Disease Information & Resources
Medical news alerts, discussion groups, and related resources.

Driving and Dementia [.pdf]
This 2007 article in the British Medical Journal reviews the data on the safety records of drivers who had been diagnosed with dementia and concludes that the risk of crashes is acceptably low for up to 3 years following diagnosis. They also find negative consequences of prematurely taking away driving privileges.

Eldercare Online
One of the leading online communities where supportive peers and professionals help caregivers improve the quality of life of patients and caregivers. Provides news, online tools, chat, forums, and more.

Elderweb
The oldest and largest aging and eldercare sourcebook on the Web.

Ethical Issues
A summary of the Fairhill Guidelines, which were developed out of a nine-month series of discussions involving family caregivers and patients at the Fairfield Center for Aging in Cleveland

Feeding Tubes, Calls to stop their use in dementia (NY Times Article)

The Forgetting: A Portrait of Alzheimer's
This site accompanies the PBS documentary "The Forgetting: A Portrait of Alzheimer's," a two-hour special aimed at helping people better understand and cope with Alzheimer's. The site provides information on symptoms, risk factors, coping, as well as stories and other resources. The site also provides interactive tools such as the Living Center, a set of online activities to enjoy with someone who has Alzheimer's.

Habilitation Therapy
This article describes an approach developed by Paul Raia and Joanne Koenig-Coste. "The aim of habilitation therapy is not to restore people with a dementia such as Alzheimer's disease to what they once were (i.e., rehabilitation), but to maximize their functional independence and morale. This approach also requires minimizing or eliminating many difficult symptoms of the dementia in spite of the person's progressive physical, cognitive and emotional limitations."

Healingwell
This site offers resources and interactive tools for caregivers and patients. It features news, articles, message boards and chat rooms, newsletters, books and reviews, and resource directories on Alzheimer's disease and other diseases and disorders.

Hearthstone
This web site provides information on Hearthstone assisted living residences for those with Alzheimer's disease and other dementias, located in the northeastern part of the U.S.. The site also provides information on its various programs as well as related news and events.

The HD Lighthouse
The HD Lighthouse site is a voluntary effort to serve the Huntington Disease Community. The site provides information on diagnosis, treatment and care, research, and a community forum.

HOPES: Huntington's Outreach Project for Education, at Stanford
A public web resource on Huntington's Disease developed by a team of students and faculty at Stanford University . The site focuses on the scientific information on HD, including HD basics, causes of HD, diagnosis, treatments, and related science.

Innovations in End-of-Life Care
On-line journal devoted to improving approaches to end-of-life care. The June-July 1999 issue is titled: "Only Connect: Promoting Meaning in the Lives of Patients with Advanced Dementia," and offers resources and on-line discussion forums aimed at improving the care of individuals at advanced stages of a dementing illness.

The Johns Hopkins Alzheimer's Disease Research Center (ADRC)
The Johns Hopkins Alzheimer's Disease Research Center (ADRC) is a multi-disciplinary group dedicated to studying the biological basis of Alzheimer Disease, which will eventually lead to advances in treatment and improved prognosis. The website provides information about the disease, clinical studies and trials, treatment programs, and other valuable information.

Kingshill Research Centre
This website is maintainted by the Kingshill Research Centre, Swindon, UK, which aspires to improve "quality of life" for patients and caregivers by producing high-quality research information for use in the development of new treatment alternatives. Includes pratical tips.

National Association of Professional Geriatric Care Managers
The GCM site provides a searchable database of professionals who specialize in assisting older people and their families to arrange for long-term care.

National Respite Locator
Provides information on respite services by state.

Nursing Home Compare
A U.S. Government Web-based tool that provides detailed information about the past performance of every Medicare- and Medicaid-certified nursing home in the country.

Nursing Home Info
This site provides a map-based search engine to locate facilities in a given geographical area. The site includes links to nursing home web sites, profiles, and contact information. The site also includes guides on needs assessment, selection criteria, and financial information.

Portal Mayores
This scientific portal specializes in geriatrics and gerontology. This website was created in 2001 as a result of an agreement of collaboration among the IMSERSO (Institute for Older Persons and Social Services) and the CSIC (Spanish Council for Scientific Research) to provide information about the elderly on the Internet. In Spanish.

Okada Specialty Guide Dogs
Okada Specialty Guide Dogs is a non-profit organization based out of Citrus County Florida, which trains rescued dogs to aid people with various difficulties. The areas of training are Hearing, Seizure, Alzheimer's, residential therapy, companion, and Happy Hound, which is a trained canine for children and young adults with a serious illness.

Rx Canada Universal Drug Store, Ltd.
A fully licensed online Canadian pharmacy providing discount prescription drug prices to American customers. Includes a directory of links to other drug-related resources.

Senior Housing Net
This Web resource includes a directory of retirement communities, assisted living facilities and nursing homes, with detailed descriptions, photographs, floor plans, 360° tours, and direct communications links to onsite managers. Additional information on health topics, long-term care financing, and more.

The Silver Knights
The Silver Knights is an informal nonprofit organization that teaches adults in the United States how to play chess in an effort to help prevent Alzheimer disease.

University of California-San Francisco's Memory and Aging Center Channel
This YouTube channel features UCSF's renowned clinical-researchers discussing disease characteristics which are often subtle and not well known, even among members of the medical community. Personal stories of patients and family members are also featured, together with practical advice and coping strategies from healthcare professionals.

Veritas Medicine
Veritas Medicine is a company that helps link up patients with ongoing clinical trials for a variety of major medical conditions, including Alzheimer Disease. The service is free to patients, and each patient's information is kept confidential.



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Inside the Brain: An Interactive Tour. The Alzheimer's Association offers this slide show explaining brain basics and what goes wrong in Alzheimer's disease.

Research Study Volunteers Needed
Senile Plaque Imaging Study in Patients with Alzheimer's Disease Using Positron Emission Tomography. The study takes place in Toronto, Canada.
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