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Advice and Services for Caregivers

» "So Far Away -- 20 Questions for Long Distance Caregivers"
From the U.S. National Institute on Aging, an excellent online manual for family members needing to coordinate care for a loved one who lives a distance away.

» Eldercare Locator
A nationwide, easy to use locator system that identifies for you nearby nonprofit/governmental elder services organizations that provide a range of advice and services to help with elder care needs and questions.

»Sick to Death and Not Going to Take It Anymore!
Joanne Lynn, a public policy expert on end-of-life care and chronic illness, wrote this valuable guide to reforming health care policy for the last years of life. You can read it here, online, in chapters that include: Shortcomings in Current Care The Baby Boom Grows Old; Who Will Provide Care?; The Loneliness of the Long-Term Care Giver; Methods to Implement Reforms; and Reforms to Implement Right Away! It is an insightful overview of what needs to change.

» Family Caregivers Alliance
Established 30 years ago, FCA is the first community-based nonprofit organization to address the needs of families and friends providing long-term care at home. It offers programs at national, state and local levels to support caregivers. There's much information here on their site, including newsletters on latest legislative activity to help caregivers.

» Elder Issues
A web-based eldercare service that provides guidance and information for those who need to coordinate support for aging parents or disabled family members.

» National Family Caregiver Support Program
A government service for caregivers, with dozens of fact sheets on subjects related to caregiving and how to get help at the local level.

» National Institute on Aging
Free information on a wide range of subjects, in English and Spanish, including end-of-life care, the biology of aging and Alzheimer's disease. It also produces a simple-to-use Web site designed for older people.

» Caregiver Resource Directory
Beth Israel Medical Center compiled this guide offering resources, facts and advice about caring for a family member, as well as caring for the caregiver.

» Well Spouse Association
A national, nonprofit membership organization offering support to wives, husbands, and partners of chronically ill and/or disabled people.

Related Reading

» A Call to Action
For citizens wanting to call attention to the growing need for quality elder care and support for caregivers, here's a summary of what experts suggest.

End of Life Issues

» Growth House: Guide to Death, Dying Grief, Bereavement and End of Life Resources
A site offering a wide range of help and guidance for families/caregivers of the elderly and those with life-threatening illnesses.

» Handbook for Mortals
An online consumer guide for end of life care. Chapters include: Living with Serious Illness; Enduring and Changing; Finding Meaning; Helping Family and Loved Ones; Getting the Help You Need; Talking with Your Doctor; Advance Care Planning; Coping with Events Near Death; Enduring Grief and Loss.

» Aging with Dignity -- Five Wishes
A Five Wishes document helps a person express how they want to be treated if they are seriously ill and unable to speak for themself. According to this Web site: "It is unique among all other living will and health agent forms because it looks to all of a person's needs: medical, personal, emotional and spiritual."

» Center for Practical Bioethics
An organization at the forefront of aging and end-of-life issues and the ethics questions surrounding them, this group is also a resource for policy ideas for the government and other organizations.

» National Hospice Foundation
An organizaiton that promotes hospice care and educates families and professionals about caregiving, terminal illness, loss, and bereavement.

» National Hospice and Palliative Care Organization
Web site of the "largest nonprofit membership organization representing hospices and palliative care program and professional in the United States," The NHPCO advocates on behalf of hospices, their patients and their patients families.

Long-Term Care Planning & Financing

» "Retirement Savings and Long-Term Care Needs: An Overview"
From The Retirement Security Project, a joint initiative of George Washibngton University and the Brookings Institute, this report is a a clear and concise summary of what the government will cover for long-term care through the federal-state funded Medicaid program (and eligibility criteria for Medicaid); what Medicare covers and how it fails to support the most needed kinds of care; how long-term care insurance works and who purchases it; and the gaps that exist in America's system of financing long-term care.

» BenefitsCheckup
An online service provided by the National Council on Aging, BenefitsCheckup allows people to find programs that can help them meet health care costs.

» Center for Medicare and Medicaid Services (CMS)
CMS is a federal agency that administers the Medicare program and works in partnership with the states to administer Medicaid.

» National Association of Professional Geriatric Care Managers
This association offers information and referral services to find help in coordinating care for a loved one.

» Partnership for Prescription Assistance
This program helps qualified people who lack prescritpion coverage to get needed medicines.

» Almost Home
A PBS program that offers information and links on nursing homes, their costs and some initiatives underway to reform and improve their environment for residents.

Alzheimer's Disease

» Alzheimer's Diesease Education and Referral Center
A service of the National Institute on Aging, the center offers free publications and information on diagnosis, treatment, care, caregiver needs, long-term care. They also offer advice and information at their toll free phone number: 1-800 438-4380.

» Alzheimer's Association
A national voluntary heatlh organization supporting Alzheimer's research and care, it offers information and support to patients and families.

One City At the Forefront

» Foundation on Aging -- Changing the Face of Aging
Kansas City, Missouri and its environs have taken a leadership role in collating resources and partnerships to help the elderly and their caregivers. Their Web site offers a glimpse of what they've done.

Other Resources

» National Center on Elder Abuse
The Center promotes understanding and action on elder abuse, neglect and exploitation.

» Partners Against Pain
A group providing information, education and advocacy on better pain management.

» American Pain Foundation
A foundation dedicated to eliminating the undertreatment of pain.

» National Pain Foundation
Another resource site for managing pain for families and caregivers.

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posted nov. 21, 2006

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