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Consumer Health Resources: Caregiver Websites

Resources and tips for patients and health consumers

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Want to contact your Nursing & Health Sciences Librarian or set up a virtual or F2F appointment with her? Email Debra Smith: smithkak@cod.edu

The College of DuPage and the C.O.D. 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 your health care provider, who can interpret it for you and apply it to your individual case.

Find a Health Care Facility

America's Best Hospitals
U.S. News and World Report ranks the top medical centers

Illinois Department of Public Health: Nursing Homes in Illinois
Includes reports, how to select a nursing home, and a searchable directory of nursing homes in Illinois

Illinois Health and Hospital Association
Learn about IHA's more than 200 member hospitals and nearly 40 member health systems through their websites and connect with them by phone or in person

Illinois Hospital Report Card
Access information about the volume, cost and quality of health care provided in Illinois medical facilities

Medicare.gov: Find & compare nursing homes, hospitals & other providers near you

MEDLINEplus National Library of Medicine Directories
Arranges directory links into categories including physicians, specialists, hospitals, services, and facilities

National Hospice Locator
The National Hospice Locator (NHL) geo-maps and provides information about every known hospice in the United States. Find hospices by clicking a state on the map, zooming into the area of interest, and clicking on a hospice pin (on the map) or name (in the list below the map) for detailed information. Information is gathered from Medicare data files; numerous hospice, state, and national public Web sites; and from surveying hospices directly

Caregiving

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

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 is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge

The Caregiver's Handbook
From the California State University's Institute for Palliative Care, access a complete online guide for caregivers of the elderly. Includes helpful checklists, and worksheets

CDC's Alzheimer's Disease and Healthy Aging
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

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

Healthy Aging--HHS.gov
Resources on aging to help you and your family members plan for health care, long-term care and retirement

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

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

Safe Kids Worldwide
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

 

Caregiving for Specific Patient Populations

50 Essential Dementia Resources
A blog post from seniorlifestyle.com containing an alphabetical list to 50 sites providing information and support to caregivers and individuals with Alzheimer's and dementia

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 Resources from the U.S. Department of Labor
Access disability-related information and resources

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

Supporting Military Caregivers
Brief article with resources

Warrior Care- Recovery Coordination Program (RCP)
Our mission is to proactively support wounded, ill, and injured Service members in their recovery and reintegration or transition to civilian life. To achieve this, we focus on its vision to ensure the nation’s wounded, ill, and injured Service members, their families, and caregivers are not forgotten

Assistive Technology

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.

Performance Health
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

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)

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

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

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. [scroll down the page to view the Tenets]

FCA: When Caregiving Ends
Information on 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

National Hospice Locator

The National Hospice Locator (NHL) geo-maps and provides information about every known hospice in the United States. Find hospices by clicking a state on the map, zooming into the area of interest, and clicking on a hospice pin (on the map) or name (in the list below the map) for detailed information. Information is gathered from Medicare data files; numerous hospice, state, and national public Web sites; and from surveying hospices directly. 

 

 

Dr. Wolfelt’s Tenets of Companioning the Bereaved

Companioning is about...

 

  1. Being present to another person’s pain; it is not about taking away the pain.
  2. Going to the wilderness of the soul with another human being; it is not about thinking you are responsible for finding the way out.
  3. Honoring the spirit; it is not about focusing on the intellect.
  4. Listening with the heart; it is not about analyzing with the head.
  5. Bearing witness to the struggles of others; it is not about judging or directing these struggles.
  6. Walking alongside; it is not about leading.
  7. Discovering the gifts of sacred silence; it is not about filling up every moment with words.
  8. Being still; it is not about frantic movement forward.
  9. Respecting disorder and confusion; it is not about imposing order and logic.
  10. Learning from others; it is not about teaching them.
  11. Compassionate curiosity; it is not about expertise.

Practical ways to “companion” people in grief from Dr. Alan Wolfelt, https://www.centerforloss.com/trainings/

  • URL: https://library.cod.edu/consumer
  • Last Updated: Jul 11, 2022 8:57 PM
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