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Caregiver Stress

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:

  • Grocery shopping
  • House cleaning
  • Cooking
  • Shopping
  • Paying bills
  • Giving medicine
  • Toileting
  • Bathing
  • Dressing
  • Eating

Usually caregivers take care of elderly people. 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.

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% 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.

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. 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 (AD) or other kinds of dementia are particularly vulnerable to burnout. Research shows that most dementia caregivers suffer from depression and stress. Also, 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, capable and that they are making a difference in the life of a loved one.

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, stomach aches, or other physical problems

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 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.

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.

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. The NFCSP helps states 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

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."

What kind of caregiver services can I find in my community?

There are many kinds of community care services such as:

  • Transportation
  • Meals
  • Adult day care
  • Home care
  • Cleaning and yard work services
  • Home modification
  • Senior centers
  • Hospice care
  • Support groups
  • Legal and financial counseling

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

How will I pay for home health care?

Medicare, Medicaid and some private insurance companies will cover the cost of limited home care. Coverage varies from state to state. Other times, you will have to pay out of pocket for these services.

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. Also, some home care agencies are cheaper than others.

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: sporadic (and not full time) skilled nursing care, physical therapy, 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. 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 or visit the Medicare Web site at: www.medicare.gov and select "Helpful Contacts."

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 your state, call your state medical assistance office. For state telephone numbers, call 1-800-MEDICARE.

For more information...

For more information on caregivers, call the National Women's Health Information Center at (800) 994-9662 or contact the following organizations: 

Alzheimer's Association 
Phone Number: (800) 272-3900 
Internet Address: http://www.alz.org

Family Caregiver Alliance
Phone Number: (415) 434 3388 
Internet Address: http://www.caregiver.org

National Adult Day Services Association, Inc.
Phone Number: (800) 558-5301
Internet Address: http://www.nadsa.org

National Association of Area Agencies on Aging
Phone Number: 202-872-0888
Internet Address: http://www.n4a.org

National Family Caregivers Association 
Phone Number: (800) 896-3650 
Internet Address: http://www.nfcacares.org

The National Respite Locator Service
Phone Numbers: (800) 773-5433. 
Internet Address: http://www.respitelocator.org/index.htm