Informal Caregiving Frequently Asked Questions
Question: Why is caregiving an issue in rural areas?
Answer: 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.
Question: Who are informal caregivers?
Answer:
A caregiver is usually a spouse, followed by an adult child, or other relative such as a sibling, a niece or nephew or a grandchild. The caregiver can also be a neighbor or a friend. The primary caregiver is most often female. Studies have shown that wives, adult daughter-in-laws, and daughters provide most of the personal care and help with household tasks, transportation and shopping. Men are more likely to purchase services or provide management services.
According to the National Alliance for Caregiving and AARP, a 2004 study estimates that 21%, or 44.4 million, of the U.S. population provides unpaid care to friends and family age 18 and older. Caregiving in the United States, by Sheel M. Pandya, states that:
- The typical caregiver is a 46 year old female with some college experience and provides more than 20 hours of care each week to her mother.
- Nearly 39% of caregivers are male.
- Most caregivers live in close proximity to the person for whom they provide care. 25% of caregivers report living in the same household as the care recipient; four in 40% say they live within 20 minutes of the recipient; 15% live over an hour away.
- 79% of care recipients are 50 and older and the average age of care recipients 50 and older is 75.
- 65% of care recipients are female and 42% are widowed.
- Caregivers report that the main problem or illness of the person they care for is old age, followed by cancer, diabetes, heart disease, and Alzheimer’s disease.
- 55% of care recipients live in their own homes and about 25% live alone.
Question: What is self-directed care?
Answer: Self-directed care provides the option of obtaining personal attendant care services provided by an individual of the consumer’s choice, who is not necessarily medically trained to provide such services. This is also referred to as consumer-directed care. Caregivers have the ability to hire family, friends, or neighbors to provide some of
the services they might need, such as meal preparation or personal care. Additional information can be found by reading Self-Directed Care in Home and Community-Based Services, by the Georgia Division of Aging Services.
Question: What do caregivers provide?
Answer: 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.
Question: What resources are available on caregiving for specific illnesses or diseases?
Answer: For information on specific illnesses or diseases, there are several useful websites, including:
Parkinson’s disease – The National Parkinson Foundation provides a caregiver website with resources.
Alzheimer’s – The 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.
Cancer – The American Cancer Society provides information for family and friends. The National Hospice and Palliative Care Organization assists in locating providers and support in your area.
Diabetes – The American Diabetes Association has a Family Resource Network, which connects you with other families dealing with diabetes. Not all states have a network.
Heart conditions – The American Heart Association provides a caregivers guide for those caring for loved ones with heart failure and strokes.
Lung conditions – The American Lung Association has support groups for those living with COPD as well as caregivers.
Question: As a caregiver, how do I find out what services are available in my community?
Answer: There are organizations that will assist you in locating available services in your area. Some of these are:
Visiting Angels 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.
Caring Connections is 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 and yard work services, senior centers, adult day care services, and home health aides & 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 is an online resource that provides information on publicly-funded caregiver support programs in each of the 50 states 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, a service of the U.S. Administration on Aging, connects 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 1-800-677-1116.
The National Family Caregiver Support Program, which assists caregivers, was established in October 2000. This program provides support services for family members caring for persons with disabilities and grandparents caring for grandchildren. Each state has a contact person for this program. To see who your state contact is, visit the Family Caregiver Support Program Contacts website. NFCSP also provides Caregiving Resources, a listing of caregiving information including organizations, website, hospice, advocacy, prescription assistance, respite resources, training for caregivers, and volunteer agencies.
The National Private Duty Association maintains a website for homecare providers for all 50 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.
Rural Caregivers 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.
The 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.
Easter Seals provides a variety of services at 400 sites nationwide for children and adults with disabilities, including adult day care, in-home care, camps for special needs children and more. Services vary by site.
The 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.
Question: Are there food assistance programs for the elderly?
Answer: 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 has a complete listing of all programs throughout the United States.
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 U.S. Department of Agriculture Adult Day Care Food Program 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.
Question: What is the Family and Medical Leave Act and how can it help me as a caregiver?
Answer: The Family and Medical Leave Act, which passed in 1993, 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. The U.S. Department of Labor has provided information plus a large list of frequently asked questions regarding the FMLA.
Question: What is respite care? Can I get help paying for it or other home health services?
Answer: 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.
The 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
- Hospice
- Home Health Services
- Private Duty Nursing
- Non-emergency medical transportation services
Question: As a caregiver, what advice is there for me?
Answer: The Family Caregiver Alliance reports that caregiver depression is a silent health crisis. It is important that caregivers take care of themselves. This is particularly important if you are a caregiver who is holding down a full time job, and raising your own children. Caregiving can create a change in family dynamics. There can be great sadness, feelings of isolation, and feelings of stress due to lack of leisure and personal time. The Administration on Aging stresses that caregivers:
- plan ahead
- learn about available resources
- take one day at a time
- develop contingency plans
- accept help
- make your health a priority
- get enough rest and eat properly
- make time for leisure
- be good to yourself
- share your feelings with others
Caregivers can also check to see if there is a Well Spouse support group nearby. These groups give support to wives, husbands, and partners of the chronically ill and/or disabled. To see if there is a group in your area, call 1-800-838-0879.
Question: How do I find information about transportation programs in my area that will assist in getting a loved one to a medical appointment?
Answer: 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) office.
Credits
Last revised 12/03/2007
