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Frequently Asked Questions for Caregivers
1. What is a caregiver?
2. Who are our nation’s caregivers?
3. Where can I find overall caregiver support?
4. How do I find training to improve my caregiving skills?
5. What is caregiver stress?
6. How can I tell if caregiving is putting too much stress on me?
7. What can I do to prevent or relieve stress?
8. What is respite care?
9. I’m looking for respite services. Whom should I contact?
10. What is the National Family Caregiver Support Program (NFCSP)?
11. How can I find out about caregiving resources in my community?
12. What kind of home care help is available?
13. How will I pay for home health care?
14. Who is eligible for Medicare home health care services?
15. Will Medicaid help pay for home health care?
top of page1. What is a caregiver?
Caregivers are people who take care of other adults, most often parents or spouses, who are ill or disabled. The people who receive care usually need help with basic daily tasks. Caregivers help with many things such as household tasks, finances, and personal care and hygiene.
Usually caregivers take care of the elderly or disabled. Less often, caregivers are grandparents who are raising their grandchildren. The terms “informal caregiver” and “family caregiver” refer to people who are not paid to provide care. As the American population ages, the number of caregivers and the demands placed on them will grow.
2. Who are our nation’s caregivers?
About one in four American families, or 22.4 million households, care for someone over the age of 50. The number of American households involved in caregiving may reach 39 million by 2007.
- About 75 percent of caregivers are women.
- Two-thirds of caregivers in the United States have jobs in addition to caring for another person.
- Most caregivers are middle-aged: 35 – 64 years old.
3. Where can I find overall caregiver support?
It’s best to start with what your county and state have to offer, even if you think you won’t qualify for specific services. Check the blue pages of your phone book for phone numbers, or use the Internet. Counties and states all have websites, and should have a link for the Department of Health and Human Services in your area. You can also go to your local library for assistance.
4. How do I find training to improve my caregiving skills?
Since caregiving is often a skill that you didn’t necessarily anticipate needing, it can be difficult to arrange home health care, provide financial assistance, and give emotional support — all while trying to maintain a sense of balance in your own life. For further training in caregiving, you can check with the voluntary health agency that focuses on your loved one’s condition to find out if the agency offers caregiver training classes. Some of these agencies include the American Cancer Society, the American Heart Association, and the Lupus Foundation of America. Other potential community-based resources include home care agencies, the Agency on Aging in your area, and county and state departments of health.
5. What is caregiver stress?
Caregiver stress is the emotional strain of caregiving. Studies show that caregiving takes a toll on physical and emotional health. Caregivers are more likely to suffer from depression than their peers are. Limited research suggests that caregivers may also be more likely to have health problems like diabetes and heart disease than non-caregivers.
Caring for another person takes a lot of time, effort, and work. Plus, most caregivers juggle caregiving with full-time jobs and parenting. In the process, caregivers put their own needs aside. Caregivers often report that it is difficult to look after their own health in terms of exercise, nutrition, and doctor’s visits. So, caregivers often end up feeling angry, anxious, isolated, and sad.
Caregivers for people with Alzheimer’s disease or other kinds of dementia are particularly vulnerable to burnout. Research shows that most dementia caregivers suffer from depression and stress. In addition, studies show that the more hours spent on caregiving, the greater the risk of anxiety and depression.
Women caregivers are particularly prone to feeling stress and overwhelmed. Studies show that female caregivers have more emotional and physical health problems, employment-related problems, and financial strain than male caregivers. Other research shows that people who care for their spouses are more prone to caregiving-related stress than those who care for other family members.
It is important to note that caring for another person can also create positive emotional change. Aside from feeling stress, many caregivers say their role has had many positive effects on their lives. For example, caregivers report that caregiving has given them a sense of purpose. They say that their role makes them feel useful and capable, and also makes them feel that they are making a difference in the life of a loved one.
6. How can I tell if caregiving is putting too much stress on me?
If you have any of the following symptoms, caregiving may be putting too much strain on you:
- Sleeping problems — sleeping too much or too little
- Change in eating habits — resulting in weight gain or loss
- Feeling tired or without energy most of the time
- Loss of interest in activities you used to enjoy such as going out with friends, walking, or reading
- Easily irritated, angered, or saddened
- Frequent headaches, stomachaches, or other physical problems
7. What can I do to prevent or relieve stress?
Take care of yourself. In the process, you’ll become a better caregiver. Take the following steps to make YOUR health a priority:
- Find out about community caregiving resources.
- Ask for and accept help.
- Stay in touch with friends and family. Social activities can help you feel connected and may reduce stress.
- Find time for exercise most days of the week.
- Prioritize, make lists, and establish a daily routine.
- Look to faith-based groups for support and help.
- Join a support group for caregivers in your situation (like caring for a person with dementia). Many support groups can be found in the community or on the Internet.
- See your doctor for a checkup. Talk to him or her about symptoms of depression or sickness you may be having.
- Try to get enough sleep and rest.
- Eat a healthy diet rich in fruits, vegetables, and whole grains, and low in saturated fat.
- Ask your doctor about taking a multivitamin.
- Take one day at a time.
Caregivers who work outside the home should consider taking some time off. If you are feeling overwhelmed, taking a break from your job may help you get back on track. Employees covered under the federal Family and Medical Leave Act may be able to take up to 12 weeks of unpaid leave per year to care for relatives. Ask your human resources office about options for unpaid leave.
8. What is respite care?
The term respite care means care that gives the regular caregiver some time off. Respite care gives family caregivers a much-needed break. In the process, respite care reduces caregiver stress.
Respite care may be provided by:
- Home health care workers
- Adult day-care centers
- Short-term nursing homes
- Assisted living homes
Respite care is essential to family caregivers. Studies show that respite care helps caregivers keep their loved ones at home for longer periods of time.
9. I’m looking for respite services. Whom should I contact?
There are organizations that can provide a variety of respite services. Easter Seals, Family Friends, and the National Respite Locator Service are a few examples. For a complete listing, visit the National Family Caregivers Association.
10. What is the National Family Caregiver Support Program (NFCSP)?
The NFCSP is a federally funded program through the Older Americans Act. The NFCSP helps state governments provide services that assist family caregivers. To be eligible for the NFCS, caregivers must:
- Care for adults aged 60 years and older, or
- Be grandparents or relatives caring for a child under the age of 18.
Each state offers different amounts and types of services. These include:
- Information about available services
- Help accessing support services
- Individual counseling and organization of support groups
- Caregiver training
- Respite care
- Limited supplemental services to complement the care provided by caregivers
11. How can I find out about caregiving resources in my community?
A number of resources can help direct you to the caregiver services you need. These agencies will be able to tell you:
- What kind of services are available in your community
- If these services are right for you
- If you are eligible for these services
- Whom to contact and hours of operation
People who need help caring for an older person should contact their local Area Agency on Aging (AAA). AAAs are usually listed in the government sections of the telephone directory under “Aging” or “Social Services.” The National Eldercare Locator, a toll-free service of the Administration on Aging, is another good resource. They can be reached by phone at 1-800-677-1116 (TTY/TDD: 1-800-677-1116) or through the National Eldercare Locator website. The Eldercare Locator can help find your local or state AAA. Operators are available Monday through Friday, 9 a.m. to 8 p.m., Eastern Time. When contacting the Eldercare Locator, callers should have the address, zip code, and county of residence for the person needing assistance.
12. What kind of home care help is available?
There are two kinds of home care: home health care and non-medical home care services. Both types help sick and disabled people live independently in their homes for as long as possible. Caregivers and doctors decide what services are necessary and most helpful.
Home health care includes health-related services such as:
- Medicine assistance
- Nursing services
- Physical therapy
Non-medical home care services include:
- Housekeeping
- Cooking
- Companionship
13. How will I pay for home health care?
Unfortunately, caregiving can sometimes be a financial hardship. Medicare, Medicaid and some private insurance companies will cover the cost of limited home care. The cost of home care depends on what types of services are used. Non-medical workers like housekeepers are much less expensive than nurses or physical therapists. In addition, some home care agencies are cheaper than others. For additional help with financial issues, family caregivers can contact their county or state Department of Health and Human Services, or social service agencies such as Catholic Charities or the Association of Jewish Family and Children Agencies.
14. Who is eligible for Medicare home health care services?
To get Medicare home health care, a person must meet all of the following four conditions:
- A doctor must decide that the person needs medical care in the home and make a plan for home care.
- The person must need at least one of the following: part-time (and not full-time) skilled nursing care, physical therapy, speech language pathology services, or occupational therapy.
- The person must be homebound. This means that he or she is normally unable to leave home. When the person leaves home, it must be infrequent, for a short time, or to get medical care, or to attend religious services.
- The home health agency caring for the person must be approved by the Medicare program.
To find out if a person is eligible for Medicare home health care services, call the Regional Home Health Intermediary at 1-800-MEDICARE (TTY/TDD 1-877-486-2048), 24 hours a day/7 days a week or visit the Medicare website and select “Helpful Contacts.”
15. Will Medicaid help pay for home health care?
To qualify for Medicaid, a person must have a low income and few other assets. Medicaid coverage differs from state to state. In all states, Medicaid pays for basic home health care and medical equipment. In some cases, Medicaid will pay for a homemaker, personal care, and other services not covered by Medicare.
For more information on Medicaid coverage of home health care in Pennsylvania, contact the Office of Medical Assistance Programs (OMAP), for information about other states’ coverage visit the Medicare website.
Sources: The National Family Caregivers Association and the U.S. Department of Health and Human Services, The National Women’s Health Information Center.
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