Caregivers

A Toolkit for Serving Diverse Communities

This toolkit provides Aging Agencies and their partners with an easy-to-use method that can be used for providing respectful, inclusive and sensitive services for any diverse community. The toolkit consists of a four-step process and a questionnaire to help professionals, volunteers and grassroots advocates with every stage of program planning, implementation and service delivery for older adult communities, their families and caregivers. This link opens a 134 page PDF document.
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ALS Association Information for Patients, Families & Caregivers

Information to help inform and support people living with amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's disease," and their families and caregivers.

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ARCH National Respite Locator Service

Helps parents, caregivers and professionals find respite services in their state and local area to match their specific needs. Respite is temporary relief for caregivers and families who are caring for people with disabilities, chronic or terminal illnesses and the elderly.
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Alzheimer's Caregiver Guide

Publication from the National Institute on Aging offers tips and resources on topics including dealing with diagnosis, choosing a nursing home and at home care. This guide is also available in Spanish.

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Alzheimer's Disease Education & Referral (ADEAR) Center Web site

Web site from the National Institute on Aging helps you find current, comprehensive Alzheimer's disease information and resources.

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An Employer's Guide to Child & Adolescent Mental Health

Child and adolescent mental health disorders can have a significant impact on family members, caregivers and the workplace. Parent caregivers are much more likely to experience work absences and even loss of a job as a result. This guide was developed to help employers improve the delivery of child and adolescent behavioral health services, as well as provide services for family caregivers. This link opens a PDF document.
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Ask Medicare Caregiver Initiative

Provides information, tools and materials to assist the caregiver and their loved ones in making informed health care decisions.
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Brain Injury Resource Manual

Provides information on different kinds of brain injuries, both traumatic and acquired, including signs and symptoms, stages of living with brain injury, questions to ask medical professionals, information about long-term care and provisions of the Americans with Disabilities Act that may apply to people living with brain injuries. This link opens a PDF document.
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CMS Initiative to Help Caregivers

The Centers for Medicare & Medicaid Services (CMS) launched Ask Medicare, to help family caregivers access valuable health care information, services and resources.

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Caregivers & The Flu

Provides information for caregivers on special precautions to take when caring for a sick person at home, especially if the person is an infant or child. Includes information on medications, people at high risk for complications, how to protect other people in the home, as well as yourself, while caring for others.

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Caregiving Across the States

Information on caregiver support programs in each of the 50 states and the District of Columbia.
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Caregiving Resources from AARP

Resources for caregivers and links to organizations that provide assistance.
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Caregiving in the U.S. 2009

This report prepared by the National Alliance for Caregiving in collaboration with AARP, describes several important findings about caregiving and caregivers, including the fact that caregivers and care recipients continue to be predominately female (66%); among caregivers age 18 and older, the average age of today's caregiver is 49, and the average age of a care recipient is 69; approximately three-fourths of caregivers have worked while caregiving, and there has been an increase in the proportion who say they have had to make a workplace accommodation because of caregiving. The complete report can be downloaded in PDF format.

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Caring From a Distance

Provides information, support and resources for long-distance caregivers. Find help using the organization's service directories, checklist for collecting vital documents and checklist for identifying key contacts in the caregiver support system.

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Caring for Alzheimer's

Information and resources for caregivers of people living with Alzheimer's disease.
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Caring for a Person with Alzheimer's Disease

This guide is for people who care for family members or others with Alzheimer's disease (AD) at home. Includes information about how AD changes a person; coping with these changes; helping family and friends understand AD; making your home safe for the person with AD; and managing everyday activities like eating, bathing, dressing, and grooming. Information on this subject is also available in Spanish. These links open PDF documents.

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Children with Diabetes

Information about juvenile diabetes and support for parents and children with diabetes.
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Christopher & Dana Reeve Paralysis Resource Center Caregiver Information

Information and links to resources for caregivers of people with paralysis.
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DaVita Patient Citizens

DPC is an independent, nationwide, non-profit, patient-governed dialysis patient organization dedicated to improving dialysis patients' quality of life by developing awareness of dialysis-related issues, advocating for dialysis and pre-dialysis patients, improving the partnership between patients and caregivers and promoting favorable public policy.
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Developing a Care Plan

Describes ways to assess when a loved one needs outside care. It covers developing a care plan, organizing important documents and what you can do to give support. This link opens a PDF document.
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Eldercare Locator

Nationwide database of Aging Network agencies available to help older adults with disabilities and their family caregivers access needed services and support.

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Family Care Navigator

Offers state-by-state help for family caregivers. Includes services for family caregivers, as well as resources for older or disabled adults living at home or in a residential facility. It also includes information on government health and disability programs, legal resources, disease-specific organizations and much more.
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Family Caregiving 101

Provides caregivers with the basic tools, skills and information they need to protect their own physical and mental health while they provide high quality care for their loved one. Includes information on how to find help for caregivers - from financial assistance to home care to respite care.

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Federal Deposit Insurance Corporation (FDIC) Coverage - Accounts You Manage for Others

Information from the FDIC on insurance coverage for accounts you are managing as a caregiver.
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Financial Caregiving - A Survival Guide

Advice from the Federal Deposit Insurance Corporation (FDIC) on how to prevent and deal with potential money problems when loved ones are ill.
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Guide for Representative Payees

More than seven million people who get monthly Social Security or Supplemental Security Income (SSI) benefits need help managing their money. This booklet explains the responsibilities of a representative payee, and the importance of knowing what the beneficiary's needs are so you can decide how benefits can best be used for his or her personal care and well-being.
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Guide to Choosing a Nursing Home

Booklet examines topics such as how to find and compare nursing homes, nursing home resident rights and where to call for help. This link opens a PDF document.
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Information Tool Gives Consumers More Control Over Their Own Health Care

HealthCare.gov lets consumers take control of their health care by connecting them to information about quality, affordable health care coverage. HealthCare.gov is a database of health coverage options--from Medicare to the Pre-Existing Conditions Insurance Plan, and information from more than 1,000 private insurance plans. HealthCare.gov answers questions that relate to people with disabilities and health care, and also has information about insurance plans and community services in every state. Take a video tour of this website.

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Just in Case: Emergency Readiness for Older Adults & Caregivers

The U.S. Department of Health and Human Services' Administration on Aging (AoA) recommends a three-step approach in the planning for emergencies or disasters: 1) Know the basics; 2) Have your emergency supplies ready; and 3) Make a personal plan. Includes an emergency preparedness checklist. This link opens a PDF document.

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Kaiser Health News

Non-profit news organization provides in-depth information and updates on issues related to health care policy.
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Letter from Centers for Medicare & Medicaid Services (CMS) to State Medicaid Directors on Community Living Initiative

Letter from CMS Director Cindy Mann describing efforts to implement solutions that address barriers to community living for individuals with disabilities and older Americans. This link opens a PDF document.
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Medicare & You 2010

This official federal government handbook on Medicare contains important information about Medicare costs; What Medicare covers; Health and prescription drug plans; Your Medicare rights; and Health information technology. This link opens a PDF document.
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Medicare Basics for Caregivers

The National Institute of Health's guide for Medicare basics for caregivers.
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Medicare Basics: A Guide for Families & Friends of People with Medicare

Provides information related to the health and care of a person with Medicare, including planning for future health care decisions, navigating Medicare, health care choices and billing. This link opens a PDF document.
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Medicare Proposes New Rules to Ensure Equal Visitation Rights for All Hospital Patients

The Centers for Medicare & Medicaid Services (CMS) has proposed new rules for hospitals that would protect patients' rights to choose their own visitors during a hospital stay, including visitors who are same-sex domestic partners. The proposed rules would require every hospital to have written policies and procedures about patients' visitation rights, as well as instances when the hospital may restrict patient access to visitors based on reasonable clinical needs.
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National Alliance for Caregiving

Provides support to family caregivers and the professionals who help them. The National Alliance for Caregiving has publications on a variety of topics including Care for the Family Caregiver: A Place to Start and A Family Caregiver's Guide to Hospital Discharge Planning, also available in Spanish. These links open PDF documents.

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National Center of Medical Home Initiatives for Children with Special Needs

Provides support to physicians, families and other medical and non-medical providers who care for children with special needs so that they have access to a medical home.

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National Direct Service Workforce (DSW) Resource Center

Supports efforts to improve recruitment and retention of direct service workers who help people with disabilities and older adults to live independently and with dignity.
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National Family Caregiver Support Program Resources

Resources for families, caregivers and professionals including where to find support, assistance and services.
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National Family Caregivers Association

Supports, empowers, educates and speaks up for the more than 50 million Americans who care for a chronically ill, aged or disabled loved one.
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National Long-Term Care Ombudsman Resource Center

Find an advocate for residents of nursing homes, board and care homes and assisted living facilities. Ombudsmen provide information about how to find a facility and what to do to get quality care. They are trained to resolve problems.
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National Resource Directory (NRD) - Family & Caregiver Support

An online directory that offers resources and information to help wounded warriors, their families and those who serve them as they transition back to civilian life.
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Nursing Home Compare

Provides detailed information on health plans, nursing homes, Medigap policies, contacts and Medicare.

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Patient Assistance & Help with Prescription Drug Costs

Non-profit organization helps people find assistance with prescription drug costs. Web site offers free access to discount drug cards and coupons, cash discounts, copay programs and manufacturers free prescription drug programs.
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President Obama Signs Veterans, Caregivers Legislation

President Barack Obama has signed legislation to improve health care for Veterans and to recognize the important role that family caregivers play in the recovery of wounded personnel. The new law increases support for Veterans in rural areas with the transportation and housing needed to reach VA hospitals and clinics. It also expands health care for women Veterans to meet their unique needs, including maternity care for newborn children, and it allows VA to launch a pilot program to provide child care for Veterans receiving intensive medical care.

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Recognizing Caregiver Stress

Caregivers provide help for people who can't fully care for themselves, whether it's by cooking meals, paying bills or helping them get clean and dressed. Caregivers should be aware of some of the warning signs of physical and emotional stress.
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Resources for Caregivers

Links to information on support services, caregiving organizations, care homes, special needs trusts and more.
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Respecting the Rights of Hospital Patients to Receive Visitors & Designate Surrogate Decision Makers for Medical Emergencies

President Obama has asked the Secretary of Health & Human Services (HHS) to initiate appropriate rulemaking to ensure that hospitals that participate in Medicare or Medicaid respect the rights of patients to designate visitors. The President stated that it should be made clear that participating hospitals may not deny visitation privileges on the basis of race, color, national origin, religion, sex, sexual orientation, gender identity or disability. The President has also asked that he be provided with additional recommendations on actions HHS can take to address hospital visitation, medical decision-making, or other health care issues that affect LGBT patients and their families.
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Respite Care

Fact sheet regarding respite care, temporary care provided to people with disabilities in order that their families can take a break from the daily routine of caregiving. Document is in Word format.
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State Respite Coalitions & Points of Contact

The Chapel-Hill Training Outreach Project provides links to all state respite coalitions. These organizations provide temporary relief for caregivers and families who are caring for people with disabilities or chronic and terminal illnesses.
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Support for Caregivers in Health Care Reform

Learn about the CLASS Act, the Community First Choice Option and other provisions of the health reform legislation that will help family caregivers and their loved ones.
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Swine Flu: Information for Parents & Caregivers

Information from the Centers for Disease Control & Prevention (CDC) on H1N1 (swine flu) and steps you can take to protect your family and those you care for and when to seek medical care.

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USA.gov Caregivers' Resources Web Page

Links to many resources, including information on eldercare, long-distance caregiving and federal benefits programs.
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Well Spouse Association

Offers a peer-to-peer support for the spouses and partners of people who are chronically ill or who have a disability. Find a support group in your state.

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What is Adult Day Care?

Fact sheet explains what adult day care is, how centers operate and what to look for in an adult day care center.
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