Caregiver Resource Guide

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There are many excellent resources available for caregivers. This guide contains search tips and suggestions for accessing resources available through the COD Library, community resources, local government and national organizations committed to supporting caregivers and families.

Ask Your Health Science Librarian

Do you need help finding specific information? In addition to using our face-to-face, online and phone Ask A Librarian options, you may call or email me to set up an appointment or to explain what you need (I can often help you via email). Please remember that while I can assist you in finding information and can educate you about locating and citing quality health resources, I cannot diagnose or recommend treatment for specific conditions or diseases. I also cannot interpret assignments--ask your instructor! I will always refer specific medical and assignment-related questions back to your health care provider or instructor. Your questions will be kept in confidence and your privacy will be respected.

The College of DuPage and the COD Library do not create or control any of these resources, and they will not be held responsible for misuse of information or any adverse effects of recommendations stated in these resources. Health Information should always be discussed with health care providers, who can interpret the information and apply it to a specific case.

COD Library Resources

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Remember that the COD Library Reference Staff are available to assist you in finding what you need! You can call (630-942-3364), stop in, email or IM the main reference desk during open hours of operation. You can also contact the Health Sciences Librarian, Debra Smith, for confidential, personalized assistance.

Illinois County & State Government Resources

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General Caregiving Web Sites

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AARP Caregiving Resource Center
AARP’s Caregiving Resource Center contains a wealth of information, tools and tips for caregivers.

American Academy of Home Care Physicians
American Academy of Home Care Physicians seeks to promote the art, science, and practice of medicine in the home. They offer a directory of home care physicians, physician assistants and nurse practitioners by State.

ARCH National Respite Network and Resource Center
"The mission of the ARCH National Respite Network and Resource Center is to assist and promote the development of quality respite and crisis care programs; to help families locate respite and crisis care services in their communities; and to serve as a strong voice for respite in all forums"

Caregiver Action Network (CAN)
CAN (formerly the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.

The Caregiver's Handbook
Access a complete online guide for caregivers of the elderly. It is often recommended for people taking care of Alzheimer's patients but can be useful for all types of caregiving.

Caring Across Generations
The Caring Across Generations campaign is a national initiative to transform the long-term care system and change the way we care in this country

CDC's Healthy Aging
The CDC’s Health Aging site provides up-to-date, practical information to health and aging professionals as well as health consumers and caregivers.

Family Caregiver Alliance
FCA represents caregivers, describing their daily challenges, offering assistance, and supporting education, services, research and advocacy.

Family Caregivers Are Wired For Health
Review the latest statistics about how family caregivers utilize online resources in an annual report published by the Pew Internet & American Life Project.

Home Safety Council (Safe Kids Worldwide)
The Home Safety Council (a 501(c)(3) charitable organization) merged with Safe Kids Worldwide in 2011. The merger builds on the more than 40 years of combined experience of the two organizations in providing education and advocacy for preventing unintentional injuries. Under the Safe Kids Worldwide name, the organization is solely dedicated to the prevention of accidental injuries to children and adults of all ages.

MEDLINEplus National Library of Medicine: Caregivers
This page can be accessed by searching the health topic caregivers. Categories on this page include: coping; research, specific conditions/aspects, law and policy, organizations, statistics and specific populations.

National Alliance for Caregiving (NAC)
A non-profit coalition of national organizations created to conduct research, analyze policies pertaining to caregiving, develop national programs, increase public awareness of family caregiving issues, work to strengthen state and local caregiving coalitions, and represent the US caregiving community internationally. Provides extensive links to caregiving statistics and resources

National Association of Professional Geriatric Care Managers (NAPGCM)
A non-profit professional development organization committed to advancing professional geriatric care management through education, collaboration, and leadership. Check out the Consumer Library & Videos and Consumer Resources sections located under the "About Care Management" tab.

National Association of Senior Move Managers
A 501(c)(6), not-for-profit, professional association of organizations dedicated to assisting older adults and families with the physical and emotional demands of downsizing, relocating, or modifying their homes.

National Family Caregiver Support Program
Useful information developed by the Administration on Aging (AoA) of the U.S. Department of Health and Human Services (HHS).

NIHSeniorHealth
Features authoritative and up-to-date health information from Institutes and Centers at teh National Institutes of Health.The American Geriatrics Society provides expert and independent review of some of the content. Health topics include general background information, open-captioned videos, quizzes and frequently asked questions (FAQs).

Patient Advocate Foundation (PAF)
PAF provides patient mediation and arbitration services to remove healthcare obstacles including medical debt crisis, insurance access issues and employment issues for patients with chronic, debilitating and life-threatening illnesses. It offers a Co-Pay Relief Program at www.copays.org.

Rosalynn Carter Institute for Caregiving
This service unit of Georgia Southwestern State University supports family and professional caregivers through advocacy, education, research, and service. Their site has extensive, annotated, online resources for all types of caregivers.

Web Sites for Specific Types of Caregivers

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American Association of Caregiving Youth (AACY)
This Florida-based 501 (c) (3) non-profit corporation addresses the issues of the over 1.4 million children who provide care for family members unable to manage life independently due to illness, injury, disability or advanced age.

FCA--Handbook for Long-Distance Caregivers
This free PDF download is provided by the Family Caregiver Alliance. It describes how to assess a care situation; develop a care team; hold a family meeting; access community organizations and private agencies; and balance work and caregiving.

Grandparents Raising Grandchildren
USA.gov helps grandparents raising grandchildren locate state grandparent programs and get information about benefits, assistance, and more.

Well Spouse Foundation
The Well Spouse® Association, a non-profit 501(c)(3) membership organization, advocates for and addresses the needs of individuals caring for a chronically ill and/or disabled spouse/partner. At this web site, spouses and partners of the chronically ill or disabled find online support.

Caregiving for Specific Patient Populations

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ALS Association: For Caregivers
The ALS Association, established in 1985, is a national non-profit organization fighting Lou Gehrig’s Disease through international research, assisting people with ALS via a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and creating government partnerships. The Caregiver section includes useful tips and helpful advice as well as contact information for their Care Connection program.

Alzheimer's Association
The Alzheimer's Association is the leading, global, voluntary health organization in Alzheimer's care and support, and the largest private, nonprofit funder of Alzheimer's research.

American Heart Association: Caregiver Section
Rights, responsibilities, communication tips and a well-developed resource section are just some of the useful topics covered in this portion of the larger American Heart Association web site. It is designed to support the caregivers of individuals with cardiovascular diseases or stroke.

Disability.gov
This federal government web site offers comprehensive information on disability programs and services nationwide. Caregiving resources are located under the Health subheading and assistive technology resources can be located under the Technology subheading.

FCA's Caregiver's Guide to Understanding Dementia Behaviors
A fact sheet, from the Family Caregiver Alliance, providing practical strategies for dealing with behavior problems and communication difficulties often encountered when caring for a person with dementia.

National Multiple Sclerosis Society: MS and Carepartners
Packed with resources, this web site sub-section offers free articles, brochures and guidelines for family, friends and caregivers on a variety of topics relevant to those with MS.

National Resource Center on LGBT Aging: Caregiver Resources
The National Resource Center on LGBT Aging is supported, in part, under a cooperative agreement from the U.S. Department of Health and Human Services, Administration on Aging. This section of the resource center addresses caregiving within the context of the LGBT population.

Parkinson's Disease Caregiver's Information
MyParkinsons.org supports researchers; physicians; occupational, physical and speech therapists and psychological counseling. It also provides educational and medical information for Parkinson patients, their families and caregivers, neurologists and general medical practitioners

Assistive Technology Web Sites

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FCA’s Assistive Technology Fact & Tip Sheet
The Family Caregiver Alliance fact sheet explains the different types of assistive technology (AT) that may be helpful to caregivers and patients. In addition, it discusses how to find AT, how to pay for it, and how to decide what devices or home modifications may be needed. Numerous links to credible AT web sites and further information are found throughout this helpful sheet.

Patterson Medical
A medical supply online catalog that provides caretakers with visual and written descriptions of helpful devices and equipment available to assist with eating/food preparation, bathing, toileting, getting in and out of bed, transporting, etc. This catalog is just one example of the many available medical supply companies that can help caregivers identify and locate resources designed to assist in caregiving.

Online Caregiving Videos

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CAREGIVERdotORG
the Family Caregiver Alliance (FCA) YouTube channel offers free chaptered videos including "Safe at Home" (caregivers of those with dementia or Alzheimer's are shown inexpensive options for making basic home modifications to help address problematic behavior when providing care at home) and the Caregiver College Video Series (introduction and seven concise chapters that help family caregivers with daily caregiving efforts including transferring, nutrition, personal care challenges, behavior issues, and caregiver self-care)

Caring for Someone With Alzheimer's
A series of short video clips from the National Institutes of Health providing tips and explanations for some of the commonly encountered behaviors and symptoms of Alzheimer's.

HBO Documentaries: The Alzheimer's Project
The Alzheimer’s Project is a presentation of HBO Documentary Films and the National Institute on Aging at the National Institutes of Health in association with the Alzheimer's Association®, Fidelity® Charitable Gift Fund, and Geoffrey Beene Gives Back® Alzheimer's Initiative. It features a four-part documentary series, fifteen short supplemental films, a detailed website, and links to a nationwide community-based information and outreach network. One of the documentaries, "Caregivers," highlights the joys and sorrows of people who share their loved one's dementia journey.

My Learning Center from the Pennsylvania Homecare Association (PHA)
PHA is a state trade association representing more than 500 organizations providing homecare to individuals. My Learning Center offers free, short videos on basic physical and emotional caregiving aspects (transferring, bathing, dealing with aggression, etc.). Free registration is required.

VideoCaregiving
A visual education resource for family caregivers, videocaregiving.org, from Terra Nova Films, is a video-based Web site that includes all-original, documentary video material. The videos show real people facing real challenges in real life caregiving scenarios.

YouTube
Many associations, organizations and educational institutions have posted “how-to” instructional videos useful to caregivers, patients and their families. Use the search box to locate caregiver-related topics such as "making an occupied bed," "bathing a patient," or "patient transfer." Since content is not peer-reviewed, users must evaluate the quality and authority of the videos.

Hospice & Post-Caregiving (Including Grief & Loss)

Bereavement Resources
MedlinePlus's Bereavement topic page indexing credible resources selected and organized by the National Institutes of Health and the National Library of Medicine

Choosing a Hospice
The National Hospice and Palliative Care Organization has created a helpful worksheet to help identify factors that may be important to you and your family when selecting a hospice

Companioning Philosophy: Dr. Wolfelt’s 11 Tenets of Caring for the Bereaved
Alan D. Wolfelt, Ph.D., an internationally noted author, educator, and grief counselor discusses ways to support (be a helpful companion to) individuals after loss

Family Caregiver Alliance: Post-Caregiving
Provides in-depth articles and information on caregiver self-care, ambiguous loss, grief and loss, and when caregiving ends

Grief and Loss: Caring for the Caregiver After Death
Article from a licensed clinical psychologist and grief support group facilitator

Hospice Care Resources
MedlinePlus's Hospice Care (End-of-Life) topic page indexing credible resources selected and organized by the National Institutes of Health and the National Library of Medicine

Hospice Foundation of America (HFA)
HFA, a nonprofit organization, provides programs for healthcare professionals that are designed to improve care of those with terminal illness and those experiencing the process of grief. Their programs for the public are designed to assist individual consumers of health care who are coping with issues of caregiving, terminal illness, and grief

The Mourner’s Bill of Rights
Ten "rights" of all mourners written by Alan D. Wolfelt, Ph.D., an internationally noted author, educator, and grief counselor

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Learning Corner

COD caregivers wanted to learn more about the following issues. Below are links to additional reading material shared by our members. The links provided are just suggestions for further reading--they are not intended to be definitive or comprehensive.

HR-Sponsored COD Caregiver Resources

COD Caregiver Support Group Member Recommendations

The following resources were shared by members of the COD Caregiver Support Group during monthly meetings. Members found these providers/services to be useful while caregiving. Please note that the College of DuPage and the COD Library do not create or control any of these resources, and they will not be held responsible for misuse of information or any adverse effects of recommendations stated in these resources. Health Information should always be discussed with health care providers, who can interpret the information and apply it to a specific case.

  • AllegroMedical.com
    http://www.allegromedical.com
    Allegro Medical is a division of Allegro Enterprises, Inc., a privately-owned company, that sells/supplies Bathroom Assists, Daily Living Aids, Diabetes Supplies, Exercise/Fitness, Incontinence, Orthopedics, Child Nutrition, Pain Relief, Patient Care, Personal Care, Syringes, Urologicals/Catheters and Wound Care products in the United States

  • Sanders & Warren Geriatric Care Management, LLC
    http://www.sandersandwarren.com
    Provides geriatric care management services for seniors and individuals with special needs
  • Visiting Angels Living Assistance Services in Illinois
    http://www.visitingangels.com/elder-home-care-chicago-il

    Provides non-medical senior home care within DuPage County. **Visiting Angels Agencies are available in many areas--click the "Contact Us" button to locate services in other regions or call 800-365-4189
  • Kenneth Young Center
    http://www.kennethyoung.org/

    Offers Community Mental Health and Senior Services for the Northwest Suburbs of Chicago
  • Metropolitan Family Services
    http://www.metrofamily.org/

    A multi-service agency that is dedicated to serving the entire family with seven centers in Chicago and the suburbs
  • Voices of Vision Talking Book Center in Geneva, IL
    http://vovtbc.org/

    Provides free library service to persons unable to read or use conventional print material due to a visual or physical disability. There is no cost to eligible readers. Talking books and magazines, braille books and magazines, catalogs, and playback equipment are mailed to registered readers postage free  and may be returned in the same way. Digital formats are also available for download.
  • Spectrios Institute for Low Vision
    http://www.spectrios.org/

    Spectrios Institute for Low Vision, formerly Deicke Center for Visual Rehabilitation, helps individuals with vision loss(from macular degeneration, glaucoma, diabetic retinopathy and other conditions) lead full and productive lives via vision aiding devices and the latest technologies designed to maximize vision
  • Elder Law Attorney Resources
  • NLM 4Caregivers
    https://www.facebook.com/NLM4Caregivers/

    The National Library Of Medicine has recognized that caregivers are an underserved population of individuals that often are forced to act as the health care decision-making surrogates for loved ones. In an effort to reach out to caregivers, the NLM has created Facebook and Twitter accounts to share important information/resources, answer questions and encourage discussion.

Do you have additional caregiving resources that you'd like to share? Are you in need of one-on-one, confidential information/research assistance? Contact Debra!

This resource guide is featured in the following article:
Smith, D.J.K. (2014). Online caregiving resources. Journal of Consumer Health On the Internet 18(3), 260-270. DOI:10.1080/15398285.2014.932183