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Department of Health and Human Services
Administration on Aging


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Professionals and Providers

Caregiver Resources

Family Caregiver Support – State Facts at a Glance

The National Association of State Units on Aging and the National Conference of State Legislatures, with funding from the Administration on Aging, have produced Family Caregiver Support – State Facts at a Glance. This document was designed to educate state legislators and policy makers on issues faced by family caregivers. Profiles have been developed for each state and the District of Columbia which include demographic data on the state’s caregivers, caregiver support programs, and state caregiving legislation that has been enacted.

Caregiver Assessment

The National Center on Caregiving at the Family Caregiving Alliance has released two documents from the September 2005 Consensus Conference on Caregiver Assessment. Volume I, Caregiver Assessment: Principles and Strategies for Change, summarizes the consensus reached by the experts attending the conference. Volume II, Caregiver Assessment: Voices and Views from the Field, contains the personal perspectives of two caregivers as well as four background papers that were commissioned for the meeting. These publications can be viewed by clicking here. A third publication entitled Caregivers Count Too! An Online Toolkit to Help Practitioners Assess the Needs of Family Caregivers can be viewed by clicking here.

So Far Away: Twenty Questions for Long Distance Caregivers

The National Institute on Aging (NIA) has released So Far Away: Twenty Questions for Long Distance Caregivers. This booklet focuses on some of the most important concerns caregivers have about providing long-distance care. The booklet is free and may be ordered by calling 1-800-222-2225 or going to http://www.nia.nih.gov/HealthInformation.

Rural Caregiving

The National Advisory Committee on Rural Health and Human Services has released The 2006 Report to the Secretary: Rural Health and Human Services Issues. This document contains an excellent chapter on rural caregiving with recommendations. The report can be found at http://ruralcommittee.hrsa.gov/nacpubs.htm .


AARP

The AARP is a national, nonprofit membership organization of persons age 50 years and older. Their website, www.aarp.org , contains a wide variety of materials pertaining to caregiving and grandparenting. Selected examples include:

American Red Cross

The American Red Cross has developed Family Caregiver Program, a nine session educational program for family caregivers teaching skills building. As part of the program, they have produced individual booklets on the subject area of each module as well as a video. The sessions include:

  • Assisting with Personal Care
  • Positioning and Helping Your Loved One Move
  • General Caregiving Skills
  • Home Safety
  • Healthy Eating
  • Caring for a Loved One with Alzheimer’s Disease or Dementia
  • Caring for a Loved One with HIV/AIDS
  • Legal and Financial Issues
  • Caring for the Caregiver

Contact your local American Red Cross Affiliate to determine if they are offering this program. More information can be found on the American Red Cross website

American Society on Aging The American Society on Aging (ASA) was funded by AoA to implement Caregiving Awareness through Resources and Education for Professionals (C.A.R.E.- Pro). Developed with the assistance of the American Nurses Association, National Association of Social Workers and the American Occupational Therapy Association, C.A.R.E.- Pro is a web-based, multi-media, self-study curriculum to increase the skills and knowledge of professionals serving family caregivers. More information on C.A.R.E.- Pro can be found on ASA’s website

The ARC of the United States

The ARC of the United States is a national advocacy organization dedicated to children and adults with intellectual and developmental disabilities. They were the recipients of a three year cooperative agreement from AoA to provide assistance to the aging network on the needs of caregivers caring for children and adults with intellectual and developmental disabilities. The ARC collaborated with the University of Albany and the Rehabilitation Research and Training Center on Aging with Developmental Disabilities at the University of Illinois at Chicago. The following documents were produced with this funding and can be found at www.thearc.org/afcsp/agingresources.htm

  • Help for Caring (updated with AoA funds under the NFCSP)
  • Strategies for Finding and Working with Older Caregivers
  • Key Issues in Working with Grandparent Caregivers
  • Issues around Transition Planning
  • Overview of Aging Issues and Individuals with I/DD
  • How the Social Security Administration Defines Disability for Social Security Disability Benefit Eligibility
  • Appealing a Decision by the Social Security Administration for Disability Benefit Eligibility
  • Aiding Older Caregivers of Persons with Intellectual and Developmental Disabilities: A Tool Kit for State and Local Aging Agencies

Additional resources for caregivers can be found on the website for the Rehabilitation Research and Training Center on Aging with Developmental Disabilities at the University of Illinois at Chicago: http://www.uic.edu/orgs/rrtcamr/familya.html .

Council on Aging of Southwestern Ohio

The Council on Aging of Southwestern Ohio in Cincinnati received a grant from AoA to test the efficacy of in-home training of family caregivers. The goal of the project was to reduce caregiver stress, burden and injuries, while increasing their knowledge of appropriate care techniques. The full report on this project, conducted by Scripps Gerontology Center at Miami University, is available for download at www.scripps.muohio.edu .

Easter Seals

Easter Seals is a national association that assists persons with disabilities and special needs and their families. AoA funded Easter Seals for a three year period to develop a series of materials to better assist family caregivers while transporting their disabled or elderly relatives. Transportation Solutions for Caregivers consists of a toolkit containing a video, informational booklet and other materials (also available in Spanish). Another publication developed under the grant is Transportation Solutions for Caregivers: A Solutions Package for Volunteer Transportation Programs. More information, including an order form, can be found. Click here. The video can also be ordered from Easter Seals. Other grant produced materials on the website include: Solutions Package for Adult Day Services Transportation Programs and The Senior Transportation Options Template, developed with the Beverly Foundation, which can be used to identify all of the transportation options that are available in your community.

Eastern Area Aging on Aging/University of Maine

The Eastern Area Aging on Aging, in conjunction with the University of Maine at Orono, was awarded a grant from AoA under the NFCSP to implement Maine Primary Partners in Caregiving. Materials produced under this grant can be found on the University of Maine’s website:, and include:

  • Maine Primary Partners in Caregiving: A Project Manual
  • A Handbook for People Who Care: Caring for Parents and Other Older Adults
  • Family Caregiving: Family Fact Sheet #1
  • Depression: Family Fact Sheet #2
  • The Health Care Team Includes the Caregiver: Family Fact Sheet #3
  • Intimacy: Family Fact Sheet #4
  • Elder Abuse, Neglect and Exploitation: Family Fact Sheet #5
  • Men Provide Care to Relatives Also: Family Fact Sheet #6
  • Caregiving Resources: Family Fact Sheet #7

A companion series of fact sheets for primary care practitioners on the same topics is also available on the website.

Family Caregiver Alliance

The Family Caregiver Alliance (FCA) in San Francisco operates the National Center on Caregiving (NCC). T he FCA provides a central source of information and technical assistance on caregiving and long-term-care for policy makers, health and service providers, media, program developers, funders and families. FCA was funded by AoA under the NFCSP for a three year period to conduct a 50-state survey of federal and state-funded caregiver support programs. Their website, www.caregiver.org , contains a wealth of valuable resources for caregivers and providers, including:

  • Fact Sheets – FCA has published over 100 fact sheets on different aspects of caregiving and long term care. Many of these fact sheets are available in languages other than English. Some examples are:
    • Be Wise…Immunize
    • Caregivers Guide to Medications and Aging
    • Caregiving and Depression
    • Women and Caregiving: Facts and Figures
    • Caring for Adults with Cognitive and Memory Impairments
  • Research and Policy Studies - The following three documents were prepared by the FCA with funding under the National Family Caregiver Support Program:
    • State of the States in Family Caregiver Support: A 50-State Study
    • Family Caregiver Support: Policies, Perceptions and Practices in 10 States Since Passage of the National Family Caregiver Support Program
    • Family Caregiving as a Grantmaking Area: Current Focus and Future Trends
  • Monographs – Several examples include:
    • The State of the Art: Caregiver Assessment in Practice Settings
    • Navigating the Care System: A Guide for Providers to Help Family Caregivers
    • Workplace Programs for Family Caregivers: Good Business and Good Practice
  • Policy Briefs – such as:
    • Consumer-Directed Home Care: Effects on Family Caregivers
    • Caregiver Depression: A Growing Mental Health Concern
    • Respite Care: State Policy Trends and Model Programs
  • Caregiving Policy Digest – an electronic newsletter published by FCA and distributed twice a month. It contains news of recent federal and state legislation related to caregiving, resources, research studies, etc. Registration can be done on line for this newsletter as well as for their regular newsletter.
  • State Profiles – As a result of the 50 state survey FCA conducted for AoA, they prepared a series of state profiles which contain useful information on the various state programs that can benefit family caregivers. The Family Caregiver Alliance, in collaboration with the National Family Caregivers Association, also developed "Estimated Prevalence and Economic Value of Family Caregiving, by State." (off-site)

Generations United

Generations United (GU) is a Washington, DC based organization dedicated to improve the lives of children, youth, and older people through intergenerational collaboration, public policies, and programs. GU was awarded a three year cooperative agreement from AoA to develop educational materials on grandparents and other relatives raising grandchildren and to establish a national network of experts that could assist the aging services network. The experts identified by GU with expertise in kinship care can be found at: http://ipath.gu.org/Exper871280.asp . The following products were produced under this grant and are available at: http://ipath.gu.org/GU_Fa8161318.asp:

  • A Guide to the National Family Caregiver Support Program and Its Inclusion of Grandparents and Other Relatives Raising Children
  • Annotated Bibliography on the Issues Facing Grandparents and Other Relatives Raising Children
  • The Second National Symposium on Grandparents and Other Relatives Raising Children Intergenerational Action Agenda

They have also produced a series of fact sheets which can be located at their website above:

  • Caregivers of All Ages
  • Information and Assistance Programs
  • Housing Needs and Challenges
  • Respite Care
  • Support Group Development (also in Spanish)
  • National Family Caregiver Support Program (also in Spanish)
  • Supplemental Services

Georgia Division of Aging Services

Georgia received an AoA grant to test consumer directed care in rural areas of the state. Under their grant, they produced the following products which are available on their website, www.aging.dhr.state.ga.us :

  • A Self-Directed Care Guidebook: Developing Your Program
  • Power Point Presentation
  • Evaluation of the Project

A video is also available which describes the legal and financial issues involved in developing a consumer directed program. For more information, contact the Georgia Division of Aging Services at (404) 657-5336.

Hospice of the Florida Suncoast

The Hospice of the Florida Suncoast, located in Largo FL, received funding from AoA to examine end of life issues affecting family caregivers and to develop a curriculum and train experts from around the country. One of the products developed was a 900 page tool kit titled Caregiving Near Life’s End. Information on how to order this manual can be found on their website: www.thehospice.org/caregiv/index.html . In addition, they also conducted and published the results of a national survey, the Caregiving at Life’s End National Needs Assessment . Their website identifies state trainers who have completed the course as well as other useful information for caregivers and providers on end of life issues.

Massachusetts Executive Office of Elder Affairs

The Massachusetts Executive Office of Elder Affairs received funding from AoA under the NFCSP to develop a Caregiver Resource Center, specifically for caregivers of deaf, hard of hearing and late deafened elders. In conjunction with the Massachusetts Commission of the Deaf and Hard of Hearing, they produced the following products that are available on their website www.mass.gov/elder .

  • Helping Caregivers Understand Hearing Loss, Communication Access and Related Issues (power point presentation)
  • Serving Older Americans Who are Deaf, Hard of Hearing or Late Deafened and Their Caregivers: Suggestions for State Units on Aging

Mather Lifeways

Mather Lifeways, in Evanston IL, received funding for a three year project to implement and evaluate Powerful Tools for Caregivers, a train the trainers, six module program, to teach self-care techniques that can be used by family caregivers. This program has been adapted in several states and an online version is currently being piloted. More information can be obtained from their website, www.tools4caregivers.com.

There you can also find information on subscribing to their electronic newsletter, Caring with Confidence, which provides useful tips for caregivers.

National Alliance for Caregiving

The National Alliance for Caregiving (NAC), based in Bethesda MD, is a coalition of national organizations focusing on issues related to family caregiving. NAC conducts research, policy analysis, program development and public awareness of caregiving. Their website, www.caregiving.org , contains the following and other useful publications and information:

  • Young Caregivers in the U.S. – Funded by AoA, this report summarizes the findings of the first national prevalence study of caregiving provided by children ages 8-18. NAC conducted this survey with United Hospital Fund.
  • Caregiving in the U.S. – A national survey conducted by NAC and AARP in 2004.
  • Care For the Family Caregiver: A Place to Start . Prepared with HIP Health Plan of New York.
  • The MetLife Juggling Act Study: Balancing Caregiving with Work and the Costs Involved.
  • The MetLife Study of Employed Caregivers: Does Long Term Care Insurance Make a Difference?
  • Miles Away: The MetLife Study of Long Distance Caregiving
  • Resources for Caregivers 2004.
  • A Family Caregiver’s Guide to Hospital Discharge Planning (also available in Spanish)
  • Family Caregiving 101 Website , www.familycaregiving101.org, was developed by the NAC and the National Family Caregiver Association. It contains a wide variety of useful information for family caregivers.
  • Caregivers in Decline: A Close-Up Look at the Health Risks of Caring for a Loved One

National Association of Area Agencies on Aging

The National Association of Area Agencies on Aging (n4a) was funded for two years to implement Making the Link, a project to connect the area agencies on aging with health care providers to assist family caregivers. Under this grant, n4a developed materials and conducted outreach to physician offices to engage them and other health care providers in identifying and assisting their patients who were family caregivers and connecting them to supportive services. Products produced under this grant include the following which are available on their website, www.n4a.org:

  • Project Toolkit
  • Physician Resource Kit
  • Physician Outreach Strategy Kit
  • Promising Practices: Engaging Physicians . . . Supporting Family Caregivers

National Association of State Units on Aging (NASUA)

NASUA was the recipient of a three year cooperative agreement to develop materials to assist the aging network in the implementation of the National Family Caregiver Support Program. NASUA developed the following products under their cooperative agreement which are found on the caregiver section of their website, www.nasua.org/family caregiver/index.htm :

  • Considerations for the Service Package (Systemic Development Guide #1, Executive Summary)
  • The Role of Coordination in the Family Caregiver Support Program (Systemic Development Guide #2, Executive Summary)
  • Advice on Quality (Systemic Development Guide #3Research Briefs Volumes I and II)
  • The Aging Network Implements the National Family Caregiver Support Program (State Experience Report #1)
  • Coordination Activitiesinthe National Family Caregiver Support Program (State Experience Report #2)
  • Serving Older Persons with Visual Impairments and Their Caregivers: Suggestions for State Units on Aging
  • Improving Services to Minority Caregivers (Information Package for Web-Enhanced Seminar #1)
  • Caregiving, Quality and Consumer Direction (Information Package for Web-Enhanced Seminar #2)
  • The State of the States in Family Caregiver Support: A 50 State Study (Information Package for Web-Enhanced Seminar #3)
  • Self-Assessment Tool: Promoting Systemic Development of State Family Caregiver Support Programs: NASUA’s Project of National Significance

National Cancer Institute

The National Cancer Institute has produced three booklets on issues affecting caregivers of relatives with cancer. They include:

National Family Caregivers Association

The National Family Caregivers Association (NFCA), based in Kensington MD, is a national association devoted to supporting, educating and advocating for family caregivers. NFCA received a two year grant from AOA to implement Communicating Effectively with Health Care Professionals. Under this grant, they trained trainers nationally to implement this project in communities across the nation. More information on this project can be found on their website, www.thefamilycaregiver.org as well as the following publications:

  • The Family Caregiver Self-Awareness and Empowerment Project - Market Research on Developing a Communications Strategy to Reach Family Caregivers
  • The Survey of Self-Identified Family Caregivers

Family Caregiving 101 Website , www.familycaregiving101.org, was developed by the National Alliance for Caregivers and the National Family Caregiver Association. It contains a wide variety of useful information for family caregivers.

New Jersey Department of Health and Senior Services

The Division of Senior Affairs in the New Jersey Department of Health and Senior Services was funded for a three year period to implement New Jersey EASE for Caregivers. This project was designed to expand the existing NJ EASE single point of entry to include family caregivers. Products produced under this grant include the following which are available on their website, www.caregivernj.nj.gov :

  • Caregiver Best Practices in New Jersey
  • A Pocket Guide to Caregiver Resources in New Jersey
  • Culturally Sensitive Approaches to Outreach: A Guide for the Aging Services Network
  • Understanding Caregivers Across Cultures Staff Training Curriculum

Philadelphia Corporation for Aging

Philadelphia Corporation for Aging was awarded a three year grant from AoA to examine the differences between African American and Caucasian daughter and daughter-in-law caregivers. As part of this grant, the following product was developed which is accessible at http://www.pcaphl.org/programs/fcsp_protocol.pdf :

  • Caregiver Nursing Protocol: Integrating Nursing Intervention with Social Work Services

Rosalynn Carter Institute for Caregiving

The Rosalynn Carter Institute for Caregiving at Georgia Southwestern State University in Americus GA was the recipient of a three year grant from AoA to establish Community Caregiving Networks (CARE-NETs) and to develop a Community Caregiving Capacity Index (CCCI). Under this grant the following products were developed, which are available on their website, http://www.rosalynncarter.org/AoA_CARE-NET_Project.htm :

  • Caregivers Together: Establishing Your Own CARE-NET
  • Caregivers Planning Together: A Practical Guide to Action Planning by Caregiver Coalitions
  • AoA Final Project Report
  • Community Caregiving and Capacity Index and Technical Manual (available in mid-2006)

St. Andrew’s Resources for Seniors

St Andrew’s Resources for Seniors, based in St. Louis MO, received a three year grant from AoA to test the implementation of a comprehensive eldercare management program in businesses to support employed caregivers. Their website, http://www.standrews1.com/caringworkplace/ contains their newsletter and other useful information for corporate eldercare programs and employed caregivers. In addition, the following products were produced under the grant and can be found on the website:

  • Caring Workplace Support Program Manual
  • Forms Developed
  • Survey Form for Advisory Council Evaluation
  • Caregiver Assessment
  • Caregiver Impact Survey
  • Caregiver Survey
  • Employer Survey

Senior Services of Albany

Senior Services of Albany received funding from AoA to test the efficacy of developing telephone support programs for family caregivers unable to attend support groups in the community. The evaluation of this three year grant was conducted by the University of Albany, State University of New York. The following grant related products are available on Senior Services of Albany’s website, http://www.seniorservicesofalbany.com/AOA.cfm :

  • Leading Telephone Support Groups: A Manual for a Model Psycho Educational Program
  • Telephone Support Group Program Participant Workbook
  • The Evaluation of a Telephone Caregiver Support Group Intervention

United Cerebral Palsy of Southern Arizona

The United Cerebral Palsy of Southern Arizona, in Tucson, received a three year grant from AoA to implement Aging Caregivers and the Exceptional Child. Under this grant, they provided care management, training and support services to grandparents raising grandchildren with developmental disabilities. The following products were produced under this grant:

  • Grandfamilies: Kincare Givers of Southern Arizona (video in English and Spanish)
  • Grandfamilies: The Second Time Around (video in English and Spanish)
  • Trainers Guide for Grandfamilies

More information on the availability of these items can be obtained by contacting the United Cerebral Palsy of Southern Arizona at (520) 795-3108.

United Hospital Fund

The United Hospital Fund’s (UHF) Families and Health Care Project has developed a series of documents that caregivers will find helpful.
To see these documents, click here. (off-site)

Publications include:
  • A Family Caregiver's Guide to Hospital Discharge Planning
  • Hospital Discharge Planning Helping Family Caregivers Through the Process
  • An Ethical Framework for New York State Policy Concerning Family Caregivers
  • Making Room for Family Caregivers Seven Innovative Hospital Programs

University of Hawaii at Manoa

The University of Hawaii at Manoa was funded for a three year period by AoA to develop culturally appropriate end of life educational materials for family caregivers. Under this grant the following publications were developed which can be accessed from their website www.hawaii.edu/aging :

  • Advance Care Planning – Making Choices Known
  • Planning Ahead – Funeral and Memorial Services
  • Preparing to Say Good-Bye - Care for the Dying
  • When Death Occurs – What to Do When a Loved One Dies
  • Help for the Bereaved – The Healing Journey

University of Southern California

The National Resource Center on Supportive Housing and Home Modifications at the Andrus Gerontology Center of the University of Southern California was funded by AoA to assist aging provider agencies to provide information to family caregivers on home modifications and assistive devices. Under their two year cooperative agreement, they developed the following products which are on their website, http://homemods.org/folders/cares-project/library.shtml#centerpub :

  • C.A.R.E.S. Fact Sheet (available in English, Spanish Armenian, Chinese, Korean and Vietnamese)
  • Caregiver Adaptations to Reduce Environmental Stress: Identifying Public Resources for Environmental Coping Strategies
  • Caregiver Adaptations to Reduce Environmental Stress: Environmental Coping Strategies for Caregiving
  • Caregiver Adaptations to Reduce Environmental Stress: Resource Binder (available for purchase)

 

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