Caregivers for Cancer Patients and Survivors
Although the rate of people who get cancer is decreasing, the overall number of people who have cancer is going up. The number of people who are 65 years old or older is expected to grow to 71 million by 2030—twice the number of people in this age group in 2000. Also, people are living longer after being told they have cancer, due to improvements in finding cancer early and better cancer treatments.1
People who have cancer often live at home, and get help from informal caregivers—people who help them without being paid. Informal caregivers are usually the cancer patient’s spouse, family members, friends, or neighbors. Researchers are studying what informal caregivers do and the problems and benefits of caregiving, so they can suggest ways in which caregivers can be supported.
Who Are Informal Caregivers?
While the most common type of informal caregiving relationship is an adult child caring for an elderly parent,2 other common informal caregiving relationships include parents or grandparents caring for a child with cancer, a spouse caring for a spouse, or a neighbor, close friend, or members of the same house of worship caring for the cancer patient.
The cancer patient may also receive care from a formal caregiver—a trained person who is paid to provide care, such as a nurse, therapist, social worker, or home health aide. Formal caregivers usually work for home care agencies, community or social service agencies, or for-profit providers.3
What Do Informal Caregivers Do?
The types of care that informal caregivers provide ranges from simple, occasional tasks like driving the cancer patient to the doctor, to full-time care. The demands on caregivers often change over time. Some of the types of help caregivers provide include—
- Cooking, cleaning, and other household chores.
- Running errands such as buying groceries and getting prescriptions filled.
- Helping the cancer patient bathe, get dressed, use the bathroom, eat, and take medicine.
- Paying bills and filing insurance claims.
- Providing encouragement and support to the patient, and helping him or her stay in touch with friends and family members.
- Telling the doctor if the patient gets worse or has side effects from treatment.
What Problems Do Informal Caregivers Experience?
Many people get a sense of personal fulfillment from taking care of a loved one who has cancer. But informal caregivers usually face physical, emotional, and financial problems that vary according to the amount and kind of care the patient needs.4
Physical problems. Many caregivers develop physical problems from stress and not taking care of themselves. Stress can cause aches and pains, sleep problems, and appetite changes.5 About half of caregivers often don’t get enough restful, continuous sleep, making them feel tired.6 Caregivers often don't have the time and energy to prepare proper meals and exercise, and they may skip doctor’s appointments.7
Emotional problems. Depression is common among caregivers.8 They may also feel lonely if the demands of caring for their loved one leave them little time to spend visiting friends and family, and if they have to quit their jobs.2 Caregiver stress can lead to feelings of anxiety, frustration, anger, and guilt. These problems increase as the time spent with the patient and the intensity of care increases.2 Stress is higher among caregivers who feel they have no choice but to take care of the patient.9
Financial problems. Caregiving can create immediate and long-term financial problems for caregivers. Many caregivers give money to the patient—$200 per month on average—and spend an average of $5,531 per year out-of-pocket on expenses related to caregiving. At the same time, caregivers frequently are forced to reduce their work hours or quit their job entirely to care for their loved one, reducing their retirement savings and Social Security benefits, and often losing their health insurance.10
What Can Be Done to Help Caregivers?
Caregiver assessment. A caregiver assessment is a systematic process of gathering information to describe a caregiving situation. It identifies the particular problems, needs, resources, and strengths of the family caregiver and approaches issues from the caregiver's perspective and culture to help the caregiver maintain her or his health and well-being.11
Based on the caregiver assessment, health care professionals can inform the caregiver about community resources, professional services, and state and federal agencies that may help. The health care professional also can make sure the caregiver is educated about the patient's condition and trained to give medications and use medical devices properly.
1Henley SJ, Singh SD, King J, Wilson R, O’Neil ME, Ryerson AB. Invasive cancer incidence and survival—United States, 2011. MMWR 2015:64(9);237–242.
2U.S. Department of Health and Human Services Office on Women’s Health. Caregiver stress fact sheet. May 1, 2008.
3Steve Olson, Rapporteur; Committee on the Role of Human Factors in Home Health Care; National Research Council. The Role of Human Factors in Home Health Care: Workshop Summary. National Academies Press 2010.
4Collins LG, Swartz K. Caregiver care. American Family Physician 2011;83(11):1309–1317.
5Antares Foundation. Stress Management for Emergency Responders: What Responders Can Do. [PDF-54KB] January 2009.
6Carney S, Koetters T, Cho M, West C, Paul SM, Dunn L, Aouizerat BE, Dodd M, Cooper B, Lee K, Wara W, Swift P, Miaskowski C. Differences in sleep disturbance parameters between oncology outpatients and their family caregivers. Journal of Clinical Oncology 2011;29(8):1001–1006.
7Evercare in collaboration with the National Alliance for Caregiving. Evercare Study of Caregivers in Decline: A Close-Up Look at the Health Risks of Caring for a Loved One. [PDF-954KB] September 2006.
8Papastavrou E, Charalambous A, Tsangari H. How do informal caregivers of patients with cancer cope: A descriptive study of the coping strategies employed. European Journal of Oncology Nursing 2011;16(3):258–263.
9Winter KH, Bouldin ED, Andresen EM. Lack of choice in caregiving decision and caregiver risk of stress, North Carolina, 2005. Preventing Chronic Disease 2010;7(2).
10Evercare in collaboration with the National Alliance for Caregiving. Evercare Study of Family Caregivers—What They Spend, What They Sacrifice: The Personal Financial Toll of Caring for a Loved One. [PDF-1.2MB] November 2007.
11Feinberg LF. Caregiver assessment: understanding the issues. American Journal of Nursing 2008;108(9 Supplement):38–39.