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Caregiver Stress

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• Caring for People With Alzheimer's Disease and Dementia
• Burnout Warning Signs
• Taking Care of Yourself
• Additional Resources

Caregiving can be rewarding. It feels good to be able to care for a loved one. Spending that time together can give new meaning to your relationship. However, it is also physically and emotionally demanding. Many caregivers are providing help or are "on call" practically 24 hours a day. This leaves little time to spend with spouses, children, friends, or at work. Those who work full or part time may fear that the many days and hours they must take off will put their jobs at risk. Money is often a problem as well. The drugs, doctors' visits, or in-home medical equipment can be very costly. Sometimes the caregiver has to delay saving for retirement or for college.

Caring for People With Alzheimer's Disease and Dementia

Caring for a loved one who has Alzheimer's disease (AD) or another form of dementia can be especially tiring. This is because they need constant medical care and supervision. Also, studies have shown that caring for someone with a brain-impairing disease can be more stressful than caring for someone with physical problems. Brain-impairing diseases include AD and other forms of dementia.

So, caregivers for people with AD or dementia are at higher risk for burnout. Women caregivers are also more likely to feel stressed out and overwhelmed. They are so busy taking care of a loved one that they neglect their own health. Taking care of yourself is important for all caregivers. Research has shown that caregivers:

• get colds and flu more easily
• are more likely to have depression or anxiety
• are at higher risk for heart disease

Burnout Warning Signs

Not taking care of your physical and emotional health will have an effect. All those colds and other sicknesses will make helping even harder. They may also put your loved one at risk. You may make mistakes when giving them medication or forget to make an important doctor's appointment. You may explode verbally, or even physically. Finally, you may completely burn out physically or emotionally. This would leave you unable to give care at all.

For your sake and your loved one's, don't ignore these possible burnout signs:

• Feeling sad, unusually anxious, or moody.
• Crying more often than usual.
• Having trouble sleeping or getting out of bed.
• Having a low energy level or lack of interest in things you usually enjoy.
• Feeling short of breath or like you have a knot in your throat.
• Getting frequent stomach cramps or headaches.
• Having chest pains.
• Drinking too much.
• Eating too much or too little.

Pay attention to these symptoms and get the help you need. Talk to your doctor about your physical and emotional symptoms. Make sure she knows you are a caregiver. Seeing a counselor may help if you are depressed or anxious. And don't ignore emergency symptoms such as severe chest pains, shortness of breath, nausea, sweating, or pain in the jaw. You may be having a heart attack — call 911 immediately. If you feel like hurting yourself or are afraid you will hurt yourself, talk to a family member, friend, clergy member, or your doctor.

Taking Care of Yourself

The good news is that there are many things you can do to help prevent burnout:

• Find community caregiving resources – This can give you some much needed free time and can be a beneficial addition to your loved one's care.
• Ask for and accept help – You can't do it all yourself. You just can't. Ask your spouse to help out. If your spouse is the one you’re caring for, ask adult children, other family members, or even friends.
• Stay in touch with friends and family – Social activities can help you feel connected and may reduce stress. Your friends and family may also notice burnout signs that you aren't aware of.
• Find time for exercise most days of the week – With your jammed schedule, this may seem impossible, but it's important. Maybe you can take time during a lunch hour or early morning to jog or go swimming. Even a short brisk walk can have helpful effects.
• Establish a regular routine – Find a system and schedule that works for you and stick to it as often as possible. Make a list if you need to. Knowing that a tidal wave of tasks isn't going to crash down on you can be a huge relief. It can also give you a better sense of control.
• Look to faith-based groups for support and help – Participating in a religious community, if you choose, can be comforting. Most faith-based groups also have programs with people ready and willing to help.
• Join a support group for caregivers in your situation (like caring for a person with dementia) – Sometimes you just need to talk to people who've been there. You can share ideas and resources for coping.
• If you can afford to, get help – It doesn't even have to be a home health aid. Whether it's a cleaning service, grocery delivery, or someone to walk your dog, it's one less thing you have to do.
• Take time for you – Make sure you do something for yourself every day. You could take a brief walk or a calming bath. Catch up with a friend over coffee. Take a power nap. Or just some take time to sit, listen to music, read, meditate, or just think. Try to find the time to pursue hobbies you enjoy.
• Try to get enough sleep and rest – Studies have shown that not getting enough sleep increases the level of stress hormones in your body. This can sap your mood, energy, and health.
• Eat a healthy diet rich in fruits, vegetables, and whole grains – You've heard it before, but if you eat better, you really will feel and function better.
• Take one day at a time – Stop asking yourself "what if." Don't obsess about all you have on your plate. It doesn't solve anything and it can be overwhelming.

Additional Resources

Publications

1.   Fact Sheet — Caregiver Stress — This publication provides tips for relieving the stress of caregivers, as well as types of support that are available.

   http://www.womenshealth.gov/faq/caregiver-stress.cfm

2.   Caring for Someone With Alzheimer's — This publication provides information on caring for someone that has Alzheimer's disease. It provides care instructions for different settings, as well as safety and support issues when caring for someone with Alzheimer's disease.

   http://nihseniorhealth.gov/alzheimerscare/toc.html

3.   Maturity Health Matters - FDA Health News for Older Adults, Their Families and Caregivers — This online newsletter about FDA regulated products is for older adults, their families and their caregivers. Maturity Health Matters will focus on FDA regulated products that are helping people live longer, more productive lives.

   http://www.fda.gov/cdrh/maturityhealthmatters/issues.html

4.     Medicare Basics: A Guide for Families and Friends of People with Medicare — This brochure provides caregivers of Medicare recipients with general information on Medicare. It explains what Medicare is and how it helps the individual. The brochure also provides information on seeking a second opinion, coverage options, and statements and bills.

   http://www.medicare.gov/Publications/Pubs/pdf/11034.pdf

5.   National Family Caregiver Support Program — This site provides information, assistance, and support to caregivers.

   http://www.aoa.gov/AoARoot/AoA_Programs/HCLTC/Caregiver/index.aspx

6.   NFCSP Caregiver Resources — This Internet site provides information on aging associations, publications, and resources for the use of caregivers.

   http://www.aoa.gov/prof/aoaprog/caregiver/careprof/resources/caregiver_resources.aspx...

7.   State by State Profiles of Caregivers — This Internet site provides information on the National Family Caregiver Support Program (NFCSP), organized on a state-by-state basis.

   http://www.aoa.gov/prof/aoaprog/caregiver/careprof/state_by_state/state_by_state.aspx...

8.   7 Tips to Help You to Help Your Parent with Medicare Part D Prescription Drug Coverage — Seven easy-to-read tips are provided on how to explain Medicare Part D to a loved one. Resources are also offered to caregivers for additional information on Medicare and eligibility.

   http://www.caregiving.org/data/ECI%20HC%207Tips_r1b.pdf

9.   Care for the Family Caregiver: A Place to Start (Copyright © NAC) — This booklet is designed to give you an overview of the basic aspects and issues involved with caregiving. It provides basic information about many important and universal aspects of caregiving.

   http://www.caregiving.org/pubs/brochures/CFC.pdf

10. Caregiving and Depression (Copyright © FCA) — This publication explains what depression is and why you may be at higher risk for depression if you are caring for a loved one with dementia. It also provides information on how depression is treated and how you can get help.

    http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=393

11. Caring for Someone (Copyright © NHPCO) — This site on caregiving provides an introduction to caregiving and includes information on preparing your home and providing both physical and comfort care. It also discusses the importance of caring for yourself and explains what services are available to help caregivers.

    http://www.caringinfo.org/CaringForSomeone.htm

12. Caring for Someone Who Has a Stroke (Copyright © American Heart Association) — This fact sheet provides information on what a caregiver's role is when caring for someone who has had a stroke. It also provides information on where to go for help if you are feeling overwhelmed by your caregiving responsibilities.

    http://www.americanheart.org/presenter.jhtml?identifier=2875

13. Eldercare at Home (Copyright © FHA) — This on-line book provides detailed information on some of the common issues related to caregiving. Each chapter discusses either a physical, mental or emotional problem and provides information on understanding the problem and when to seek professional help. It also includes information on daily care management and planning for the future.

    http://www.healthinaging.org/public_education/eldercare/contents.php

14.   Evercare Study of Family Caregivers - What They Spend, What They Sacrifice (Copyright © National Alliance for Caregiving) — This report explores the personal financial toll of taking care of a loved one on caregivers.

    http://www.caregiving.org/data/Evercare_NAC_CaregiverCostStudyFINAL20111907.pdf

15.   Resources for Caregivers 2007 (Copyright © NAC) — This brochure is designed to help individuals and families who have assumed the role of caregiver or anticipate future caregiving. This brochure provides mailing addresses, phone numbers and Internet addresses of national associations and organizations, plus an annotated list of caregiver-related books, videos and Web sites.

    http://www.caregiving.org/pubs/brochures/resourcesforcaregivers07.pdf

16. Taking Care of YOU: Self-Care for Family Caregivers (Copyright © FCA) — This publication provides information on how being a caregiver can affect your physical and mental health and what you can do to maintain your own physical and emotional well being.

    http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=847

Organizations

1.   Administration on Aging, HHS
2.   Eldercare Locator, AoA, HHS
3.   National Clearinghouse for Long-Term Care Information, AOA, HHS
4.   National Institute on Aging, NIH, HHS
5. AGS Foundation for Health in Aging
6. American Association of Retired Persons (AARP)
7. Caring Connections
8. Family Caregiver Alliance
9. National Alliance for Caregiving
10. National Family Caregivers Association

= Indicates Federal Resources

Content last updated March 5, 2009.