The U.S. Centers for Disease Control and Prevention reports that six in 10 Americans live with at least one chronic illness, defined as a disease that lasts longer than three months. It is often up to caregiving family members and friends—encompassing from 44 million to 53 million Americans in any given year—to help provide care and alleviate the burden of illness on sufferers. But caregiving can take a toll on family members and friends since it requires selflessness and often huge financial and time commitments. This year, anxiety over COVID-19 has contributed to added feelings of stress, worry, and isolation to both people who are ill and those caring for them. November is National Family Caregivers Month, a time to honor family members and friends who sacrifice for others.
What Is Caregiving?
Although caregiving takes many forms, it typically involves helping family members and friends with chronic illnesses or other conditions that prevent them from handling their own daily activities.
Caregiving duties can include:
- Buying groceries, cooking, cleaning homes, and doing laundry
- Helping family members get showered and dressed
- Scheduling medical appointments and transporting loved ones to those appointments
- Picking up prescriptions and helping family members take scheduled medications
- Talking with doctors, care managers, pharmacists, and insurance representatives on the behalf of the loved one
- Helping physically transfer loved ones in and out of bed and into and out of wheelchairs
- Assisting with physical and occupational therapy exercises
- Administering injections
- Offering companionship
- Caring for children of loved ones who are ill, including getting them ready for school, driving them to and from school, getting them to activities, and feeding them
- Helping with financial concerns, including paying bills and making rent and mortgage payments
- Paying for items out of pocket
The financial burden can be great on caregivers. A 2016 AARP (American Association of Retired Persons) study estimates that family caregivers spend nearly $7,000 a year on out-of-pocket costs related to caregiving. The estimated total value of uncompensated care provided by family caregivers in a recent year equaled $470 million for 37 billion hours of care.
Who Is the Typical Caregiver?
The following data reveal information about caregivers:
- The typical caregiver is a married or partnered woman who works outside the home and spends more than 20 hours a week caring for her parent, usually a mother.
- Women provide 75 percent of caregiving support in the United States.
- The majority of caregivers are middle-aged (between 35 and 64 years old).
- Around 45 percent of caregivers for adults with mental illness are parents, 14 percent are adult children, and 11 percent are spouses.
- Most caregivers are employed (60 percent).
- Nonwhite caregivers provide more care and are in poorer health than the typical white caregiver.
- Many caregivers of the elderly also are elderly, and one-third are in poor health themselves.
- About 20 percent of caregivers provide more than 40 hours a week, while another 20 percent of caregivers provide fewer than 8 hours a week to care for others.
- Caregivers of people with cognitive disorders provide an average of 84 hours of care per week, according to a California study.
- Caregiving can span from less than one year to more than 40 years, with the average being 4.3 years of care.
- Most caregivers live near their ill loved ones.
- Most caregivers care for relatives (83 percent).
- Caregivers live with the care recipient 24 percent of the time, while 61 percent live up to an hour away, and 15 percent live a one- to two-hour drive or more away.
The Burden of Caregiving
When caregiving becomes long term or the demands increase, caregiving can interfere with the daily lives and routines of caregivers and add additional stress and financial challenges.
The following can affect the demands on caregivers:
- Type of illness or condition: Caring for someone with a cognitive disorder, such as Alzheimer’s disease, dementia, or other brain impairments, can be more stressful than caring for someone with a physical impairment.
- Long-distance caregiving: Caring from a distance—usually by an adult child or sibling in a different city—is difficult emotionally and logistically and involves gathering information about available resources, coordinating services, and assembling a local team of family, friends, and paid help to meet the loved one’s needs. Long-distance caregivers must sometimes also take off from work for long periods of time to travel to the patient’s city.
- Urban versus rural settings: Caregivers and patients living in rural settings are faced with the additional difficulties of having fewer resources available, including physicians, pharmacies, hospitals, and transportation services, as well as challenges with weather and geographic distance and isolation.
- Differing cultural approaches to caregiving: Sometimes greater burdens are placed on individuals in families that honor certain ethnic and cultural traditions. For instance, a heavier burden may be placed on daughters and daughters-in-law of aging parents than sons and sons-in-law.
Effects of Caregiving
Caregiving responsibilities have increased in recent decades because of the following:
- Medical advances that prolong the lives of the sick and elderly, requiring longer-term help from families
- Shorter hospital stays, putting the burden of care for recovering patients on family members
- Limited discharge planning
- Shortage of home-care workers
- Expansion of home-care technology that may require family members to understand, monitor, or facilitate the use of medical equipment
Most caregivers are not prepared for their new role. As a result, they face the following burdens:
- Physical and emotional health challenges:
- High levels of stress
- Increased use of alcohol or other substances
- Financial issues: Financial consequences, particularly for female caregivers, can run to nearly $660,000 over a lifetime to include about $25,000 in lost Social Security benefits, $67,000 in lost pension benefits, and $566,000 in foregone wages. In addition, caregivers face loss of income from the following:
- the care recipient (such as income from a spouse who cannot work)
- loss of their own income due to reduced hours or loss of a job
- loss of employer-based medical benefits
- loss of savings to contribute to the loved one’s care or to pay for additional help
- threat to retirement income due to fewer contributions.
- Loss to businesses: Caregiving has an impact on businesses when there is lost productivity from caregiving employees, absenteeism from caregiving employees, and replacement costs for caregiving employees who must leave their jobs to devote more time to caregiving.
- Legal issues: Caregivers should seek an attorney to handle the financial aspects of long-term care needs, set up a durable power of attorney (DPA) and durable power of attorney for health care (DPAHC), and provide guidance in obtaining a conservatorship to manage their loved one’s legal, estate, personal affairs, assets, and medical care.
Steps for New Caregivers
It can be overwhelming to step into the caregiver role for the first time. Following are steps that can help ease the burden:
- Learn about the diagnosis: It helps caregivers to know what the disease process involves in their loved one’s diagnosis and how to plan for upcoming events.
- Talk about finances and health-care wishes: Completing a DPA, a legal document giving someone the ability to act in another’s place, can help relieve anxiety about the loved one’s wishes, and it allows the caregiver to handle the finances of their loved one.
- Take advantage of community resources: Learn what services are provided in your loved one’s area, including Meals on Wheels and adult day-care programs.
- Find emotional support: Caregiving can move one’s own social life into the background. Online and in-person groups can help keep caregivers connected with others undergoing similar difficulties. (Contact the Family Caregiver Alliance to learn more about local services by calling 800-445-8106 or visiting caregiver.org and clicking on “Family Care Navigator.” Or visit the Southern Caregiver Resource Center website or by emailing or calling 800-827-1008 for a list of local support groups.)
Help for Caregivers
Because caregivers are at risk for developing emotional distress, they must find ways to alleviate depression before it becomes chronic. Ways to reduce stress include:
- Getting support from family and friends in caring for the ill loved one
- Getting support from family and friends to help with the care of their own children and other family members when they are caring for the patient
- Getting exercise
- Eating a healthy diet
- Getting spiritual support, including by going to church, praying, journaling, or meditating
- Spending time with friends
- Seeking mental health help when needed
The Mental Health Alliance (MHA) offers free, anonymous, and confidential online screening tools at mhanational.org. Although not meant to be a diagnosis, the quizzes can help determine whether you are experiencing symptoms of a mental health condition such as depression, bipolar disorder, eating disorder, post-traumatic stress disorder, or anxiety. The MHA’s B4Stage4—Where to Get Help page provides information on where to start to find the help needed before a mild disorder turns into a mental health crisis.
Taking time for leisure is also important. Consider having lunch or taking a walk with a friend; participating in projects that give an immediate sense of accomplishment, like baking or exercising; and doing something to relax or feel good, like watching a movie or reading a book.
Caregivers should seek professional help when the following serious signs of trouble arise:
- Feeling depressed, physically ill, or hopeless
- Feeling like hurting yourself or the person you care for
- Turning to alcohol or recreational drugs too often
- Fighting with your spouse, children or other family members or friends
- Taking care of yourself less often
Caregivers need a break and doing so may require reaching out to others, including through the following services:
- Financial assistance: Medi-Cal and veterans’ programs can help with finances incurred while caring for a loved one. Contact the California Department of Health Care Services (DHCS) by calling the ombudsman at 888-452-8609 or emailing . For more information, visit the DHCS website.
- Caregivers of U.S. Veterans: U.S. military Aid and Attendance (A&A) benefits are available for those caring for veterans by filling out an A&A application. The VA Caregiver Support page of the U.S. Department of Veterans Affairs has a long list of caregiver services available for veterans. Visit VA Caregiver Support for more information, including adult day-care centers, home-based primary care, skilled home care, and home hospice care, or call the caregiver support toll-free helpline at 855-260-3274.
- AARP: The AARP website has information on both Medi-Cal and veterans’ benefits as well as legal information on getting paid by other family members for your service and by long-term care insurance plans. Visit the AARP Family Caregiving: Financial and Legal page for more information.
- Respite care, short-term, temporary relief, may be in order if caregiving becomes overwhelming. Respite care workers can help with dressing, hygiene, grooming, shopping, running errands, meal planning, light housekeeping, and companionship. A respite caregiver can be a volunteer from a religious or civic group or organization or may be hired by the family. Although most insurance plans do not cover respite care, the state of California can provide financial assistance. Contact the Southern Caregiver Resource Center at 858-268-4432 or 800-827-1008 or see the CRC website. For more information on respite care, see the National Respite Locator; information on the costs for respite care can be found at the National Institute on Aging’s Paying for Care site.
- The Eldercare Locator is a public service of the U.S. Administration on Aging. It can connect you to services for older adults and their families. Contact 800-677-1116 or by email. See the website for more information.
- For information on caring for a loved one with Alzheimer’s disease, visit the Alzheimer’s Association’s website, where a live chat line is available, or by calling the 24-hour helpline at 800-272-3900.
Herrick Library Resources on Family Caregiving
Herrick Library offers a wealth of resources on caregiving. The following list includes some of the items that can be reserved and checked out via curbside pickup or as e-books in OverDrive*, where indicated:
- The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer’s Disease, Other Dementias, and Memory Loss, by Nancy Mace and Peter Rabins: An indispensable guide on caring for someone with dementia.
- Aging Parents, Aging Children: How to Stay Sane and Survive, by Miriam Aronson and Marcella Bakur Weiner: A self-help book on the challenges baby boomers face in caring for their parents as well as their children.
- Aging with Care: Your Guide to Hiring and Managing Caregivers at Home, by Amanda Lambert and Leslie Eckford: A resource on hiring competent in-home caregivers for elderly parents who choose to age in place.
- The Alzheimer’s Disease Caregiver’s Handbook: What to Remember When They Forget, by Sally Willard Burbank and Sue Pace Bell: Provides a comprehensive look at Alzheimer’s and the issues faced by caregivers.
- Alzheimer’s, the 36-Hour Day: The Complete Journey: A DVD by Peter Rabins, the medical doctor who authored the book by the same name, that is a guide to understanding and caring for patients with Alzheimer’s disease.
- The Best Friends’ Approach to Dementia Care, by Virginia Bell and David Troxel: A relationship-centered approach to dementia care that builds on the essential elements of friendship: respect, empathy, support, trust, and humor.
- A Bittersweet Season: Caring for Our Aging Parents—and Ourselves, by Jane Gross: Offers advice and important lessons learned in caring for aging parents and oneself.
- Building Better Caregivers: A Caregiver’s Guide to Reducing Stress and Staying Health, by Kate Lorig et al.: A book that shares caregiving research and information honed from thousands of caregivers.
- Cancer Caregiving A to Z: An At-Home Guide for Patients and Families, by the American Cancer Society: An indispensable, quick reference that can improve the quality of care for those helping family members with cancer.
- Caregiver’s Guide to Dementia: Practical Advice for Caring for Yourself and Your Loved One, by Gail Weatherill: A practical and comprehensive guide to understanding dementia and how to care for someone with the illness as well as oneself.
- Caregivng in the Comfort of Home: A Complete Guide for Caregivers, by Maria Meyer and Paula Derr: A guide on every aspect of home care that helps to prevent burnout in caregivers.
- Caring for Mom & Dad: This PBS DVD, narrated by actress Meryl Streep, offers an intimate look at the issues facing family caregivers who are struggling to balance work, families of their own, and caring for their parents.
- Caring for Your Parents: The Complete Family Guide, by Hugh Delehanty and Elinor Ginzler: An AARP guide that offers advice and information on navigating the complex emotional terrain many people face as their parents age.
- The Educated Caregiver, Volumes 1, 2, and 3: This set of three DVDs offers insights into coping skills, hands-on skills, and essential knowledge of caregiving.
- Gentle on My Mind: In Sickness and in Health with Glen Campbell, by Kim Campbell: A memoir by the wife of singer-songwriter Glen Campbell of how she cared for him through his addictions and then an Alzheimer’s diagnosis.
- How Do You Care for a Very Sick Bear?, by Vanessa Bayer: A children’s picture book about caring for a sick friend.
- How to Help Your Friend with Cancer, by Colleen Dolan Fullbright: Advice from the American Cancer Society on supporting and caring for someone with cancer.
- I’ll Be Seeing You*, by Elizabeth Berg: Best-selling fiction author Berg tells the poignant love story of caring for her parents in their final years.
- In Sickness as in Health: Helping Couples Cope with the Complexities of Illness, by Barbara Kivowitz and Roanne Weisman: A book for those facing the overwhelming obligation of caring for a spouse or partner with illness or a catastrophic injury.
- Mom’s Cancer, by Brian Fies: A graphic novel by a son whose mother is diagnosed with lung cancer and the effects the illness and ongoing recovery have on him and his two sisters.
- My Parent’s Keeper*, by Jody Gastfriend : A practical guide for a broad range of caregiving situations.
- Parenting Our Parents: Transforming the Challenge into a Journey of Love, by Jane Wolf Frances: The author brings decades of professional experience as a psychotherapist and attorney to those who currently or in the future may need to provide care for an aging parent.
- Tangles: A Story About Alzheimer’s, My Mother, and Me, by Sarah Leavitt: A powerful graphic memoir about an adult daughter who must help care for her mother with Alzheimer’s disease.
- Ten Thousand Joys & Ten Thousand Sorrows: A Couple’s Journey Through Alzheimer’s, by Olivia Ames Hoblitzelle: A memoir and guide by a wife whose husband was diagnosed with Alzheimer’s disease at age 72.
- Who Will Take Care of Me When I’m Old?: Plan Now to Safeguard Your Health and Happiness in Old Age, by Joy Loverde: For anyone who wants to put a plan in place before experiencing the inevitable decline in health and ability that comes with aging.
The following films on DVD explore the role of caregivers and can be checked out through curbside pickup:
- Amour: A tragic romance of a husband caring for his wife who is partially paralyzed after a stroke. In French with English subtitles.
- Away from Her: A marriage is tested when the wife (Julie Christie) experiences Alzheimer’s disease and is placed in a care facility.
- Breathe: The true story of an adventurous couple (Claire Foy and Andrew Garfield) who refuse to give up in the face of a devastating disease.
- Film Stars Don’t Die in Liverpool: A middle-aged American actress (Annette Bening) turns to her young ex-lover and his family in Liverpool, England, when her health problems increase.
- One True Thing: Based on the Anna Quindlen novel, a young woman (Renee Zellweger) must put her life on hold to care for her mother (Meryl Streep), who is dying of cancer.
- The Savages: A dark comedy-drama about a brother (Philip Seymour Hoffman) and sister (Laura Linney) who are forced to help care for their estranged elderly father.
- Still Alice: A respected university professor (Julianne Moore) must prepare herself and her family for her care after she is diagnosed with early onset Alzheimer’s.
- Still Mine: The heartfelt tale of an elderly farmer (James Cromwell) who will not let anything hamper his efforts to build a cottage for his dementia-stricken wife.
- The Peanut Butter Falcon: A man with Down syndrome who dreams of becoming a pro wrestler runs away from a residential nursing home and befriends an outlaw (Shia LaBeouf) who becomes his coach and ally.
- The Theory of Everything: Biographical love story that details the life of astrophysicist and ALS sufferer Stephen Hawking (Eddie Redmayne) and his wife and caretaker, Jane (Felicity Jones), as they defy terrible odds and continue to break ground in the fields of medicine and science.
- What They Had: An adult daughter (Hilary Swank) is forced to intervene on her ill mother’s behalf between her stubborn father, who wishes to keep his wife at home, and equally determined brother, who wants to put his mom in a memory care facility.
Sources: AARP, Family Caregiving: Financial and Legal, https://www.aarp.org/caregiving/financial-legal/info-2017/you-can-get-paid-as-a-family-caregiver.html; American Cancer Society, If You’re About to Become a Cancer Caregiver, https://www.cancer.org/treatment/caregivers/if-youre-about-to-become-a-cancer-caregiver.html; Eldercare Locator, https://eldercare.acl.gov/Public/Index.aspx; California Caregiver Resource Centers, Are You a Caregiver?, https://www.caregivercalifornia.org/; Centers for Disease Control and Prevention, National Center for Chronic Disease Prevention and Health Promotion, https://www.cdc.gov/chronicdisease/index.htm; DHCS, Contact Us, https://www.dhcs.ca.gov/pages/contacts.aspx; DHCS, Medi-Cal Managed Care and Mental Health Office of the Ombudsman, https://www.dhcs.ca.gov/services/medi-cal/pages/mmcdofficeoftheombudsman.aspx; Family Caregiver Alliance, National Center on Caregiving, Caregiving, https://www.caregiver.org/caregiving; Mental Health America, National Family Caregivers Month, https://www.mhanational.org/national-family-caregivers-month; MyHealthFinder.gov, Get Support if You Are A Caregiver, https://health.gov/myhealthfinder/topics/everyday-healthy-living/mental-health-and-relationships/get-support-if-you-are-caregiver; National Foundation for Cancer Research, National Family Caregivers Month, https://www.nfcr.org/blog/national-family-caregivers-month/?gclid=Cj0KCQiA7qP9BRCLARIsABDaZzjFldQVt-hE6nUYvnA4jWS4Myxf7ZHvDYlxKYlEvMqVhiuK9BLA1gkaAgieEALw_wcB; National Institutes of Health, National Institute on Aging, What Is Respite Care?, https://www.nia.nih.gov/health/what-respite-care; National Respite Network, National Respite Locator, https://archrespite.org/respitelocator; Southern Caregiver Resource Center, Support Groups, https://www.caregivercenter.org/; U.S. Department of Veterans Affairs, VA Caregiver Support, https://www.caregiver.va.gov/support/support_services.asp;