Supporting Informal Caregivers
Rosalynn Carter once said, "There are four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers."
Informal caregiving is assisting those who might be chronically ill, frail, or disabled, and unable to care for him/herself. It can mean partial assistance or 24-hour care for someone who can't dress, feed themselves, go to the bathroom alone, or think for himself or herself. A caregiver can be a spouse, an adult child, a relative, or a neighbor. For those who live in rural areas, finding resources to help with caregiving can be difficult. Rural caregivers are isolated from social support, resources, financial assistance, training, respite options, community programs, and information on caregiving.
According to the National Family Caregivers Association's Caregiving Statistics, more than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled, or aged family member or friend during any given year and also spend an average of 20 hours per week providing care for their loved one.
Caregiving can last for a few months or it can go on for years. Caregiving can take place in a person’s home, in a nursing home, or even long-distance. It involves communicating with doctors and other healthcare professionals. An adult child may have to balance work and family responsibilities, including raising their own children, while providing care of an older adult.
Caregiving is full of different stages, transitions, and stresses including financial and family burdens. It is in a constant state of change. Family dynamics are changed. Caregiving means compromising part of your life to assist someone with theirs. It can involve great sadness over a loved one's loss of normalcy and mobility.
For additional support and information
Available services in your community
Provides a list of programs and contact information for helping to locate services.
There are more organizations related to Supporting Informal Caregivers in the organizations section.
Frequently Asked Questions
- Why is caregiving an issue in rural areas?
- What do caregivers provide?
- What resources are available on caregiving for specific illnesses or diseases?
- What organizations can assist in locating services in a community?
- Are there food assistance programs for the elderly?
- What is the Family and Medical Leave Act (FMLA) and how can it help caregivers?
- What is respite care and is there a cost?
- How might one find transportation to get to medical appointments in rural communities?
Why is caregiving an issue in rural areas?
In many rural areas, low population combines with lack of health services, poverty, underserved areas, and geographic isolation. Particularly with the elderly, family members, neighbors, and friends often fill the service gap, providing both direct and indirect caregiving services. Adding to the situation are adult children who migrate to larger, urban areas due to education, employment, and opportunities. This often reduces the number of family members available to provide care and elderly people must rely on friends, their church, and neighbors for informal services. The need to support informal caregivers is a rural health care issue.
What do caregivers provide?
Caregivers provide emotional, financial, nursing, social, homemaking, and other services on a daily or intermittent basis. Most family caregivers volunteer their time, without pay, to help with the physical and emotional needs of a loved one. Duties vary and may include providing personal care, feeding, toileting, dressing, bathing, carrying out medical procedures such as suctioning an injured person every hour every day, assisting with activities of daily living, and managing a household. Caregiving may involve learning about hospice, giving medication, driving the person to doctor appointments, delving into a person’s personal financial situation, or paying bills.
Other ways caregivers can help is to make meals, clean house, shop for groceries, mow the lawn, and make regular phone calls to check on someone. You can also offer to help make home modifications such as installing grab bars in the shower, a stool riser for the toilet, or a wheelchair ramp by the front door.
What resources are available on caregiving for specific illnesses or diseases?
For information on specific illnesses or diseases, there are several useful websites, including:
- National Parkinson Foundation provides a caregiver website with resources.
- Alzheimer's Association provides valuable information for family and friends. You can also search your state to locate your local Alzheimer’s chapter or by calling their toll free 24 hour helpline at 1.800.272.3900. MedlinePlus provides information for Alzheimer’s caregivers.
- American Cancer Society provides information for family and friends.
- National Hospice and Palliative Care Organization assists in locating providers and support in your area.
- American Diabetes Association has a Family Link program, which connects you with other families of kids with diabetes. Not all states have a network.
- American Heart Association provides a caregivers guide for those caring for loved ones with heart failure and strokes.
- American Lung Association has support groups and information for those living with COPD as well as caregivers.
What organizations can assist in locating services in a community?
There are organizations that will assist you in locating available services in your area. Some of these are:
Consists of non-medical, private duty home care agencies providing senior care, elder care, personal care, respite care, and companion care to help the elderly and adults continue to live in their homes across America. Caregivers provide up to 24 hour care, at affordable rates.
A program of the National Hospice and Palliative Care Organization that provides free resources, information, and motivation for actively learning about end-of-life resources and helps people connect with the resources they need, when they need them. They provide information on home health care, respite care, transportation programs, meal programs, cleaning, yard work services, senior centers, adult day care services, home health aides, and hired caregivers. This resource has a toll-free helpline which is available to people looking for information, including educational brochures, advance directives, or contact information for a hospice or other organization. That number is 1.800.658.8898.
Caregiving Across the States
An online resource providing information on publicly-funded caregiver support programs in each state and the District of Columbia. You will find information on programs funded through the National Family Caregiver Support Program, Aged/Disabled Medicaid waivers, and state-funded programs that either have a caregiver-specific focus, or include a family caregiving component in their service package.
The Eldercare Locator
Service of the U.S. Administration on Aging, connecting older Americans and their caregivers with sources of information on senior services in their area. You may speak to an Eldercare Locator information specialist by calling 800.677.1116.
Caregiving Resources from the National Family
Provides a listing of caregiving information including organizations, websites, hospices, advocacy sources, prescription assistance, respite resources, training for caregivers, and volunteer agencies.
The Home Care Association of America
Maintains a website for homecare providers for all states. Their phone number is 317.844.7105. Private duty describes a wide variety of home care services that includes non-medical services such as home care aides, companion care, and homemaker services, as well as some traditional skilled nursing and therapy services. Often, the key difference between private duty and traditional home care companies is the source of payment: Private duty home care is NOT paid by Medicare. Private duty home care is paid either by the individual receiving care, the family or guardian, LTC insurance, or other insurance. In some cases, it may include home care agencies providing services under a Medicaid Waiver program or a similar state program.
Provides caregiver resources by state/region. It is designed to help bridge the information gap between geographical isolation, gaps in rural service delivery systems, and the unique needs of agricultural workers with disabilities by creating a web support community for rural caregivers.
National Association of Professional Geriatric Care Managers
Can help locate a care manager to help with caregiving issues. This person is a professional, such as a gerontologist, nurse, social worker, or psychologist with a specialized focus on issues related to aging and elder care. They work privately with older adults and their families to create a plan of care that meets the needs of the older adult.
Provides a variety of services at 400 sites nationwide for children and adults with disabilities, including adult day care, in-home care, and camps for special needs children. Services vary by site.
National Adult Day Care Services Association
Has programs designed to meet the needs of functionally and/or cognitively impaired adults through an individual plan of care. These structured, comprehensive programs provide a variety of health, social, and other related support services in a protective setting during any part of a day, but less than 24-hour care. Adult day centers generally operate programs during normal business hours five days a week. Some programs offer services in the evenings and on weekends.
Are there food assistance programs for the elderly?
The Meals on Wheels Association of America is the oldest and largest organization in the United States representing those who provide meal services to people in need. This program provides one hot meal per day to seniors. The guiding principle to which it subscribes is to help those men and women who are elderly, homebound, disabled, frail, or at risk. The Meals on Wheels program has recently expanded into rural parts of our country due to the ability to offer individually packaged, frozen meals with foods that are simple to reheat as needed and can be ordered a month at a time. This program also gives cash grants to local senior meal programs throughout the country to assist in providing meals and other nutrition services. The Meals-on-Wheels website allows you to search by city and state to find a listing of all programs in your area.
Some Meals-on-Wheels programs provide congregate meals in addition to home delivered meals. Congregate programs are simply programs that serve at senior centers, where seniors can come and eat their meal in the company of others. While this is not a rare type of program, it is certainly less common so you should check with your local program to see whether or not they have a congregate program.
The USDA Child & Adult Care Food Program (CACFP) is a Federal program that provides healthy meals and snacks to adults receiving day care. It plays a vital role in improving the quality of day care and making it more affordable for many low-income families. Nonresidential, functionally impaired adults who are receiving adult day care in an eligible day care facility, or aged 60 and older may qualify.
What is the Family and Medical Leave Act (FMLA) and how can it help caregivers?
The Family and Medical Leave Act, which passed in 1993 and was amended on January 28, 2008, is the first U.S. national policy designed to assist working caregivers in meeting their work and caregiving responsibilities. The act allows employees to take up to 12 weeks of unpaid leave to care for a newborn child or an ill family member. There are specific guidelines in order to take advantage of this act.
What is respite care and is there a cost?
Respite care is care provided by a substitute provider. This can be for a few hours to a few days. The purpose of respite care is to give time off to the regular caregiver. An example is adult day care. Adult day care provides respite for caregivers and a welcome change of scene for seniors. Adult day care programs follow either a social model or medical model. Social programs may focus on providing companionship or on hobbies or other special interests, while medical programs may focus on providing therapies such as dialysis, ventilation, and rehabilitation.
Adult day services are community-based group programs designed to meet the needs of functionally and-or cognitively impaired adults through an individual plan of care. These programs provide a variety of health, social, and other related support services in a protective setting.
National Respite Locator Service
Helps parents, caregivers, and professionals find respite services in their state and local area to match their specific needs. They provide a list of states that have respite coalitions. These state coalitions then list respite services available in their state.
Shepherd's Centers of America
Provides respite care, telephone visitors, in-home visitors, nursing home visitors, home health aides, support groups, adult day care, and information and referrals for accessing other services available in the community. Services vary by center.
Medicaid may pay for some services, such as respite care. Medicaid Home and Community-Based waiver programs vary by state and are online. For specific questions, see Medicaid's pages on:
- Personal care services
- Home health services
- Private duty nursing
- Non-emergency medical transportation services
How might one find transportation to get to medical appointments in rural communities?
Information on transportation options for the disabled and the elderly should be available at local human service offices, local transit authorities, community and faith-based organizations, and regional planning organizations. Contact your local county social service agency, your community action agency, and/or call 2-1-1 if this service is available, to find out what programs are in your area. If at the local level you are not finding out sufficient information, call your state Rural Transit Assistance Program (RTAP) manager.
The National Volunteer Caregiving Network (NVCN), formerly called Faith in Action, has over 1,000 programs throughout the country. This volunteer program provides many services, including transportation to doctor appointments, errands, and picking up groceries.
Each state has a transportation office. These offices can assist in helping answer questions and locating what transportation programs are in your area. The U.S. Department of Transportation provides a state-by-state directory to provide contact information for each of the state transportation managers and associations.
Citizens or groups wanting to implement a transportation program in their rural community should visit with their state office listed above. Your state representative can tell you what can be done and how to do it. They may also have the means at the state level to offer grants to purchase vehicles.
Community Action Agencies can also provide citizens with information on transportation in rural areas.
The American Public Transportation Association contains a listing of local public transportation systems. This listing provides a state-by-state display of state, regional and county transportation services available. They also provide a listing of public transit in your community.
For further information on rural transportation programs, please see the RAC Transportation Topic Guide, particularly the frequently asked questions section.