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STATE OF THE SCIENCE:
NURSES AND SOCIAL WORKERS SUPPORTING FAMILY CAREGIVERS

Practical Tools and Resources for Caregivers and Professionals

Practical Tools and Resources for Caregivers (click here to download)

Practical Tools and Resources for Professionals (click here to download)

This database of resources is highlighted in the September 2008 issue of the American Journal of Nursing.

Made possible by funding from The John A. Hartford Foundation and The Jacob & Valeria Langeloth Foundation.

Social workers and nurses are at the forefront of interacting with and providing support to family caregivers. In order to prepare current and future professionals in these fields, the AARP Foundation, in collaboration with the American Journal of Nursing, the Council on Social Work Education, Family Caregiver Alliance (FCA), and Rutgers Institute for Health Policy, received funding from the John A. Hartford Foundation and the Jacob and Valeria Langeloth Foundation for an interdisciplinary project on family caregiving of older adults.

The project brings together experts from the field of aging to advance the support of informal caregiving by identifying and further developing best practices in nursing and social work to help families care for older adults. The project lays the groundwork for producing a cadre of nurses and social workers who embrace a patient- and family-centered care perspective.

As a first step in this project, family caregiving experts participated in a two-day interdisciplinary invitational symposium, State of the Science: Nurses and Social Workers Supporting Family Caregivers. At this symposium, held in Washington, DC, in January 2008, attendees began to identify and address the gaps in knowledge about how nurses and social workers can provide greater support to caregivers.

One of FCA’s contributions to the outcomes of the symposium involved the compilation of two databases with practical tools and resources designed to address the needs of informal caregivers and the professionals supporting them. While a plethora of online information exists, specific tools and resources had not been gathered into one collection where professionals and caregivers alike could quickly and easily access them – until now.

The items comprising the content of the databases emerged as the product of a thorough environmental scan, and were informed by FCA’s 30+ years of experience developing services and programs to respond to caregivers’ needs and providing technical assistance to professionals and organizations striving to offer meaningful, outcome-producing services.

How to Use the Directory

There are two charts:

For Caregivers: items that family caregivers can access and use themselves.
For Professionals: items intended to increase professionals' knowledge and skills or are intended for caregivers but require professional facilitation.

Each chart is divided into several categories. Presented alphabetically, each of the tools and resources may appear in multiple categories when applicable, contain a brief description, name of the source organization, and link to the organization's homepage. Users can find specific information about the tool or resource by searching the organization's website or by using an online search engine, such as Google, and typing in the name of the tool or resource and its source.
   
For Caregivers is divided into the following categories:

1. General Information and Guides for Caregivers of Older Adults: information on a variety of issues for both the caregiver and the care receiver. Resources mentioned here are good entry points for caregivers who want to learn basic caregiving skills and who are starting to become acquainted with programs and services available to them.
2. General Information and Guides for Caregivers of Older Adults with Alzheimer’s Disease and Other Dementias: information on a variety of issues, with an emphasis on Alzheimer’s disease and related dementias.
3. Self-care for Caregivers: resources promote caregiver well-being and include  online communities, self-assessment tools and respite resources.
4. Daily Care: tips and advice on how to provide care, including subcategories on hands-on care, communicating with the care receiver and locating services in your community.
5. Planning/Legal/Financial Issues: legal and financial issues associated with care planning, advance directives, durable powers of attorney, long-term care and public benefits including Medicare and Medicaid.
6. Living Arrangements: resources on caring at home, as well as information about living arrangements in a care facility. Topics include home modification, assistive/supportive technologies, housing options, and placement issues.
7. End-of-Life Care: information on caring for someone approaching the end of her life, including resources on hospice and how to involve friends and other family members in caring for the loved one.
8. Websites of Major Federal Government Programs: selected federal government programs that specifically target family caregivers or have a major caregiving component.
9. National Organizations with a Focus on Caregiving for Older Adults selected national organizations that are either dedicated to serving informal caregivers or have a strong focus on the issue.

In addition to a brief description of each item, the chart identifies, in a separate column, the medium in which the resource or tool is available, such as publication, video/DVD, CD-ROM, database, interactive feature or other type of resource.

For Professionals is divided into the following categories:

1. Training & Education for Professionals: training programs and educational materials for professionals designed to advance their skills and understanding of the needs of informal caregivers.
2. Educational Guides, Training Programs & Curricula for Caregivers: community programs, curricula and educational materials designed to support informal caregivers in various stages and facets of their caregiving role. All programs require professional facilitation. 
3. General Information & Research: directories and examples of evidence-based interventions, research reports and journal articles on caregiver support services.
4. Caring for the Caregiver: tools and interventions that promote caregiver well-being, ranging from assessment tools to respite resources to classes for caregivers on self-care.
5. Daily Care: information and evaluated models to help professionals work with caregivers to manage their caregiving responsibilities, including issues related to driving, transitional care, and communication and behavior management.
6. End-of-Life Care: end-of-life caregiving, offering resources for professionals to help caregivers deal with emotions, make decisions and attend to relevant legal issues.
7. Websites of Major Federals Government Programs: selected federal government programs that specifically target family caregivers or have a major caregiving component.
8. National Organizations with a Focus on Caregiving for Older Adults: These are selected national organizations that are either dedicated to serving informal caregivers or have a strong focus on the issue.

In addition to a brief description of each item, the chart indicates, in a separate column, whether the resource or tool has been formally evaluated (this information has been offered by the source or host website and has not been verified by FCA). There is also a column to identify whether the resource or tool is intended to assist the caregiver in providing direct care to the care receiver (noted as "Targeted to the Care Recipient") or focuses on improving the caregiver's own health and well-being (noted as "Targeted to the Caregiver").

Methodology

The two databases of tools and resources for caregivers and professionals were compiled by analyzing the contents of multiple websites to identify the most valuable resources. The first-level search focused on several well-known government and national nonprofit organizations, and the second-level search focused on the resource links from the first-level organizations. The third-level search focused on a limited number of resource links based on the second-level search. Most of the organizations, websites, documents, guides, handbooks, online information, and educational materials that were finally included in these two resource lists were those that were mentioned repeatedly online by several respected organizations, listed frequently in resource lists, and/or were products of respected organizations in the health and caregiving fields. Tools and resources included in the lists have national "relevance," meaning they provide information that could be used in a wide variety of settings/communities.

Practical Tools and Resources for Caregivers* (click here to download )

Practical Tools and Resources for Professionals* (click here to download)

*This publication is available as a downloadable PDF document. To view and print this file you will need Adobe Acrobat Reader. It is available as a free download by clicking here.

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