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Frequently Asked Questions About Caregiving

Frequently Asked Questions

What is caregiving?
Caregiving means caring for others, whether friends or relatives, who have health problems or disabilities and need help. Caregivers provide many kinds of help to care receivers, from grocery shopping to helping with daily tasks such as bathing, dressing, and eating. Most people who need help from caregivers are elderly.

  • About one fourth of American families are caring for an older family member, an adult child with disabilities, or a friend.
  • According to recent surveys, more than 7 million persons are informal caregivers to older adults. Caregivers include spouses, adult children, and other relatives and friends. Other surveys found that almost 26 million family caregivers provide care to adults (aged 18+) with a disability or chronic illness, and 5 million informal caregivers provide care for older adults aged 50+ with dementia.
  • Studies show that more than half of caregivers are women. Care receivers are about half women and half men.
  • The average amount of time that caregivers spend on caregiving is about 20 hours per week. Even more time is required when the care receiver has multiple disabilities.
  • Caring for a person with disabilities can be physically demanding, especially for older caregivers, who make up half of all caregivers.
  • One third of all caregivers describe their own health as fair to poor.
  • Caregivers often worry that they will not outlive the person for whom they are caring.
  • Caregivers often suffer from depression.Caregivers are also more likely to become physically ill.


What is caregiver stress? 
Caregiver stress is a daily fact of life for many caregivers. Caregiving often takes a great deal of time, effort, and work. Many caregivers struggle to balance caregiving with other responsibilities including full-time jobs and caring for children. Constant stress can lead to “burnout” and health problems for the caregiver. Caregivers may feel guilty, frustrated, and angry from time to time.
Caregivers often need help caring for an elderly or disabled care receiver. Sometimes other family members or friends and neighbors are able to help, but many caregivers do most or all of the caregiving for a loved one alone. Research has shown that caregivers often are at increased risk for depression and illness. This is especially true if they do not receive enough support from family, friends, and the community.
Caring for a person with Alzheimer’s disease (AD) or other kinds of dementia at home can be overwhelming. The caregiver must cope with declining abilities and difficult behaviors. Basic activities of daily living often become hard to manage for both the care receiver and the caregiver. As the disease worsens, the care receiver usually needs 24-hour care.

What can caregivers do to prevent stress and burnout?
Caregivers can call upon others for support and assistance. Other family members, friends, and neighbors may be able to help in different ways. It may not be easy to ask for help, and you may need to make very specific requests. But getting help from others will benefit you and the person you are caring for.
Respite care can be a good way to get a break (respite) from constant caregiving. If other caregivers aren’t available to fill in for the main caregiver, respite care services may be available in the community.
As a caregiver, you can take steps to take care of your own health:

  • Eat a healthy diet rich in fruits, vegetables and whole grains and low in saturated fat. Ask your health care provider about taking a multivitamin as well.
  • Try to get enough sleep and rest.
  • Find time for some exercise most days of the week. Regular exercise can help reduce stress and improve your health in many ways.
  • See your health care provider for a checkup. Talk to your provider about symptoms of depression or illness that you may be having. Get counseling if needed.
  • Stay in touch with friends. Social activities can help keep you feeling connected and help with stress. Faith-based groups can offer support and help to caregivers.
  • Find a support group for other caregivers in your situation (such as caring for a person with dementia). Many support groups are available online through the Internet.


What is the National Family Caregiver Support Program (NFCSP)? 
The National Family Caregiver Support Program (NFCSP) is a federally-funded program through the Older Americans Act. It helps states provide services to help family caregivers. These services include:

  • Information to caregivers about available services
  • Help to caregivers in gaining access to services
  • Individual counseling, organization of support groups, and caregiver training
  • Respite care
  • Supplemental services, on a limited basis, to complement the care provided by caregivers


How can I find out about caregiving resources in my community?
There are resources with staff who can help you figure out whether and what kinds of assistance you and your care receiver may need.
The local Area Agency on Aging (AAA) is one of the first resources you should contact when help is needed caring for an older person. Almost every state has one or more AAAs, which serve local communities, older residents, and their families. In a few states, the State Unit or Office on Aging serves as the AAA. Local AAAs are generally listed in the city or county government sections of the telephone directory under “Aging” or “Social Services.”
You can also call the National Eldercare Locator, a toll-free service funded by the Administration on Aging (AoA), at 800-677-1116. The Eldercare Locator can help you find your local or state AAA. Eldercare Locator operators are available Monday through Friday, 9:00 a.m. to 8:00 p.m., Eastern Time. When contacting the Locator, callers should have the address, zip code, and county of residence for the person needing assistance. The Eldercare Locator is also available online at www.eldercare.gov
If your family member has a limited income, he or she may be eligible for AAA services including homemaker home health aide services, transportation, home-delivered meals, chore and home repair as well as legal assistance. These government-funded services are often targeted to those most in need. While there are no income criteria for many services, sometimes you may have more service options if you can pay for private help. AAAs can direct you to other sources of help for older persons with limited incomes such as subsidized housing, food stamps, Supplemental Security Income, and Medicaid.
Supportive services for the person needing care can include both in-home and community-based services, such as:

  • Transportation
  • Meals
  • Personal and in-home care services
  • Home health care
  • Cleaning and yard work services
  • Home modification
  • Senior centers
  • Respite services including adult day care.

If you are an employee covered under the federal Family and Medical Leave Act, if you meet the eligibility requirements, you are entitled to take up to 12 weeks of unpaid leave during any one-year to care for certain relatives.


What kind of paid help is available for home health care? Is there government support for this?
People with low incomes may be eligible for AAA services including homemaker home health aide services and other services. Check with your local or state AAA or the Eldercare Locator service (see resources below). Government-funded services are often targeted to those most in need. While there are no income criteria for many services, sometimes you may have more service options if you can pay for private help.
If you decide to hire a home care worker, you will need to decide how much help your older relative needs. Will several hours a day be enough, does he or she need help all day until the family returns home, or does your relative live alone and need round the clock care? You also need to decide what type of home care worker your relative needs. Home care personnel include:

  • A Housekeeper or Chore Worker is supervised by the person hiring them and performs basic household tasks and light cleaning.
  • A Homemaker or Personal Care Worker is supervised by an agency or you and provides personal care, meal planning and household management and medication reminders.
  • A Companion or Live-In is supervised by an agency or you and provides personal care, light housework, exercise, companionship, and medication reminders.
  • A Home Health Aide, Certified Nurse Assistant, or Nurses Aide is supervised by an agency’s registered nurse. Services include personal care; help with transfers, walking, and exercise; household services that are essential to health care; and assistance with medicines.

Nonprofit and for profit home care agencies recruit, train, and pay the worker. You pay the agency.
Home health care agencies focus on the medical aspects of care and provide trained health care personnel, such as nurses and physical therapists. Medicare may pay for their services.


Who is eligible for Medicare home health care services? 
To get Medicare home health care, a person must meet all of these four conditions:

  • A doctor must decide that the person needs medical care in the home and make a plan for care at home.
  • The person must need at least one of the following: intermittent (and not full time) skilled nursing care, or physical therapy, or speech language pathology services; or continue to need occupational therapy.
  • The person must be homebound. This means that he or she is normally unable to leave home. Being homebound means that leaving home is a major effort. 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.

For more information about Medicare, call 800-MEDICARE or visit the Medicare Web site (www.medicare.gov).


Will Medicaid help pay for home health care? 
Medicaid is a joint federal and state program that helps with medical costs for some people with low incomes and limited resources. To qualify for Medicaid, you must have a low income and few savings or other assets. Medicaid coverage differs from state to state. In all states, Medicaid pays for basic home health care and medical equipment. Medicaid may pay for homemaker, personal care, and other services that are not paid for by Medicare.
For more information about what Medicaid covers for home health care in your state, call your state medical assistance office. If you need the telephone number for your state, call 800-MEDICARE.

When is it Time to Stop Caregiving?
Caregiving is a very stressful situation. Stress either causes or exacerbates some 70 to 90 percent of all medical complaints, including tension and migraine headaches, high blood pressure, asthma, nervous stomach, bowel problems, and chronic lower back pains. There is research evidence indicating stress plays a role in a person’s susceptibility to heart disease, stroke, and cancer.
Stress has also been implicated in psychological disorders such as anxiety reactions, depressions and phobias, as well as poor work performance, drug and alcohol abuse, insomnia, and unexplained violence. If you are experiencing any of the above, it is extremely important that you learn and use various techniques for stress reduction (some are mentioned in this booklet), contact one of the professionals in Appendix A or come to the decision, both for your well-being and that of your care-receiver that it is time to stop caregiving.
Below are some telltale signs which can help you assess when you have reached this fork in the road; seek help professional help, utilize more stress reduction methods, or stop caregiving:

  • snapping at the care-receiver constantly even over little things
  • being constantly irritated
  • seldom laughing anymore
  • feeling constantly tired or pressured
  • losing sleep, failing to fall asleep for hours, sleeping restlessly all night long
  • yelling or screaming, or having crying fits, or rages frequently
  • withholding affection, feelings of goodwill from the care-recipient
  • withholding food, baths, dressing changes, etc.
  • constantly blaming the care-receiver for your being in this situation (his/her isolated caregiver)
  • refusing to go out anymore, even for a walk because he/she needs me
  • withholding expenditures for goods or services he/she needs because he/she is going to die soon and it is wasted money

While these are not exclusive, they indicate a classic picture of caregiver burnout. The treatment for caregiver burnout is simple — get help and get away for extended periods, either through stress management respite help or through a complete change in caregiving.
No one can remain a full-time caregiver forever; the job is much too strenuous and stressful. The point we wish to set forth is: When should I say this is my limit; I am not able to do any more. Be honest with yourself, and when that limit has been reached, STOP! Research alternatives, request help from qualified professionals, and rest easy, because you did the right thing!


What should I do as a caregiver if an emergency arises? 
Planning For Emergencies Having an emergency plan is important, especially when a substitute caregiver occasionally takes your place in the home. (Post phone numbers for the following agencies next to your telephone or a conspicuous place where they can easily be seen by anyone. This sentence modified for readers outside San Diego County.)

  • The 911 number for emergencies (Medical, Fire or Police)
  • The physician’s number (emergency and office number)
  • The name and number of the hospital the physician and the patient prefer
  • The number of the home health agency, if one is currently making visits to the home
  • The Poison Center phone number
  • The 24-hour number of the medical or oxygen supplier, if one is being used
  • The telephone number where you (caregiver) can be reached

Remember, observe changes and signs of illness in the care-receiver. They can help detect a medical problem. But if any doubts about health arise, CALL THE DOCTOR FOR ADVICE; DO NOT PROCRASTINATE!


What is the best way to keep records and manage medications?
Caregivers can help older people maintain medical records for use by the doctor. Arrangements can be made through the doctor’s office to send for previous records that could be helpful in treatment. This may require getting Releases of Medical Information signed by the care-receiver. You also should keep a list of all medications (both prescribed and over-the-counter) being used. The same medications that are helpful in easing pain, stopping infection, controlling heart rate and keeping people healthy can also cause serious problems.
Because many older adults take several medications at one time, it is possible that these drugs can interact with one another and be a danger. If more than one doctor is prescribing medications, it is important to keep each doctor aware of the drugs that are being taken. You can keep them informed by taking all your drugs in a paper sack or a list of all your drugs to each doctor. Having one pharmacist that fills all of your prescriptions is a way to prevent taking drugs that interact and cause problems. Over-the-counter or non-prescription drugs also can cause problems. Talk with your pharmacist before using them.
If you find the medicine schedule confusing or difficult to follow, ask your pharmacist about preparing all medicines in blister packs.
Below is a sample of “current medication list” which includes the essentials: name of medication, sample of the medication taped beside its name, the reason for the medication, the dosage and the time the medication is taken:
Current Medications List 

Medication Name Tape Pill Here Reason Dosage Take at..

If your care-receiver is taking several medications at different times throughout the day, it may be helpful to develop a second list to assist you with daily medication set-ups; this list may be color coded, or may have the names of the medications grouped in the times to be taken each day. For medications taken several times a day, their names will appear several times on your list as in the example below:

Daily Medication Set-up 

Time of Day Medication is given, AM + PM – List all Medications for Each Time
Bed Time

What can I do to help myself?
Acknowledge your feelings: Your feelings have a lot to do with the way you view and cope with caregiving. All feeling are legitimate, even those that may sem disturbing to you (including anger, frustration, and sadness). Recognizing and accepting your emotions are the first step toward resolving problems of guilt and stress. Learn to express your feelings to family members, friends, or professionals. Take the following caregiver Stress Test; determine how much stress you are under.
Caregiver Stress Test The following test will help you become aware of your feelings, pressures and stress you currently feel.

Which of the following are seldom true, sometimes true, often true, or usually true?

  • I find I can’t get enough rest.
  • I don’t have enough time for myself.
  • I don’t have time to be with other family members beside the person care for.
  • I feel guilty about my situation.
  • I don’t get out much anymore.
  • I have conflict with the person I care for.
  • I have conflicts with other family members.
  • I cry everyday.
  • I worry about having enough money to make ends meet.
  • I don’t feel I have enough knowledge or experience to give care as well as I’d like.
  • My own health is not good.

If the response to one or more of these areas is usually true or often true it may be time to begin looking for help with caring for the care-receiver and help in taking care of yourself.


As a caregiver, where can I turn to in the community when I need help with my role?
When family or other volunteer help is not available or cannot meet your needs, caregivers or care-receivers may wish to seek help from agencies. A wide range of help may be available. Some may be covered by private insurance, Medicare (and/or a supplemental program of your State). All of it can be purchased. Sometime the service costs may be based on the income of the care-receiver. Each agency has its own fee structure; you may want to ask about their arrangements before ordering the service.

What are some of the types of services available that could provide help in a caregiving role?
Adult Day Health Care: This is for people who are physically and/or mentally frail. It offers a range of therapeutic, rehabilitative, and support activities, including nursing, rehabilitation, assistance with life activities, social work services, meals, and possible transportation, provided in a protected setting for a portion of the day, one to five days a week, usually during weekdays.
Chore Workers/Handypersons Services: Includes heavy-duty housecleaning, minor home repairs, yard work, installing safety devices, and winterizing homes.
Companionship Services:Companions visit isolated and homebound individuals for conversation, reading, letter writing, and general light errands.
Transportation/Escort Services for the Elderly: These services provide personalized accompaniment to service providers as well as personal assistance.
Geriatric Assessment Units and Special-Care Units: Specialized geriatric units, both inpatient and outpatient, exist in some hospitals and medical centers; e.g., Master’s Program.  They provide coordinated multi-disciplinary diagnostic services to older patients.
Home Delivered Meals: Some nutritional programs as well as well as specialized meals-on-wheels programs offer home delivered meals to the frail, homebound aged. Subsidized programs ask for voluntary contributions, while others may require full payment cost for delivery of a hot, well balanced lunch, and sometimes cold evening meal.
Home Health Aides:Provide personal care to individuals at home (These services may be covered by health insurance if ordered by a physician.) Aides assist with eating, dressing, oral hygiene, bathing, colostomies, administering medications, etc., as well as light household tasks.
Home Health Care: Organized programs of nursing, social work, occupational therapy, physical therapy, and other rehabilitation services to individuals in the home.
Homemaker Services: Provided by non-medical personnel, services include shopping, laundry, light cleaning, dressing, preparation of meals, and escort services on medical visits. Homemakers can be of great help in supplementing help provided by family members, or providing relief when family caregivers need a break. Homemakers can be secured through in-home health care agencies, the Area Agency on Aging, the Department of Social Services, and religious groups and organizations. Some agencies provide bonding and training for their homemakers while others provide only a registry of homemakers’ names and phone numbers, in which case you must thoroughly check references and draw up a contract for the required services.
Hospital and Surgical Supply Services: Supply houses rent or sell medical supplies and equipment like hospital beds, canes, walkers, bath chairs, oxygen and other equipment. Consult your Yellow Pages.
Housekeeping Services: These usually include cleaning, shopping, laundry, and meal preparation.
Housing Assistance Housing assistance programs exist to help in the search for senior housing, shared housing, and finding emergency shelters, such as Heartland Human Relations and Area Agency on Aging.
Nutritional Programs: Congregate meal programs feed many older adults as a group in a senior center, community center, or school. A noonday meal is provided, containing one-third of the recommended USDA dietary allowance, usually for a voluntary contribution. Additionally, some centers provide recreational and educational activities.
Occupational Therapy: Occupational therapy, or OT, is restorative, to enhance or restore skills necessary for daily living. It should be provide by a qualified occupational therapist who is referred by your doctor.
Physical Therapy: Physical therapy, or PT, is rehabilitative therapy to maximize mobility. It should be provide by a qualified physical therapist, usually recommended by your doctor or hospital.
Respite Care Services: Respite care programs provide temporary and in some instances up to twenty-four hour care to give relief to primary caregivers. The care may be provided in the person’s home, at an adult day care center, or other facility.
Senior Service Teams:Regional/County Mental Health teams working together to provide mental health screening, needs assessments, and short-term counseling services to seniors.
Skilled Nursing Services:These specialized services are provided for specific medical problems by trained professionals through local home care agencies. Your doctor must prescribe nursing services.
Speech Therapy: Speech therapy is provided by a qualified speech therapist to overcome certain speech and communication problems. The doctor usually recommends this.
Social Day Care: Provide supportive but not rehabilitative services in a protected setting for a portion of the day, one to five days a week. Services may include recreational activities, social work services, a hot meal, transportation, and occasionally, health services.
Telephone Reassurance:Friendly telephone calls are provided by agencies or volunteers offering reassurance, contact and socialization. Telephone reassurance can be a lifeline for older people who must be left at home alone during the day.
Transportation:Transportation services provide travel by automobile or specialized vans to and from medical care.