Family Caregivers in Cancer (PDQ®)
Who Is the Caregiver?
Many cancer patients today receive part of their care at home. Hospital stays are shorter than they used to be, and there are now more treatments that don't need an overnight hospital stay or can be given outside of the hospital. People with cancer are living longer and many patients want to be cared for at home as much as possible. This care is often given by family caregivers. These caregivers may be spouses, partners, children, relatives, or friends.
The family caregiver works with the health care team and has an important role in improving the patient's health and quality of life. Today, family caregivers do many things that used to be done in the hospital or doctor's office by health care providers. Caregiving includes everyday tasks such as helping the patient with medicines, doctor visits, meals, schedules, and health insurance matters. It also includes giving emotional and spiritual support, such as helping the patient deal with feelings and making hard decisions.
The family caregiver has the very important job of watching for changes in the patient's medical condition while giving long-term care at home. Family caregivers can help plan treatment, make decisions, and carry out treatment plans all through the different parts of treatment.
This summary is about adult family caregivers in cancer.
The Caregiver's Point of View
A caregiver responds in his or her own way to the cancer patient's diagnosis and prognosis. The caregiver may feel emotions that are as strong as or stronger than those felt by the patient. The caregiver's need for information, help, and support is different from what is needed by the patient.
The life of a family caregiver changes in many ways when cancer is diagnosed. These changes affect most parts of life and continue after treatment ends.
Key times when the caregiver's role changes and new challenges come up are at diagnosis, during treatment at the hospital, when the patient needs care at home, after treatment ends, and at the patient's end of life.
Family caregivers take an active role that begins when the cancer is being diagnosed. The caregiver has to learn about the kind of cancer the patient has and new medical terms. The caregiver also goes with the patient to new places for treatment and helps the patient make treatment decisions.
The patient may ask the caregiver to be the one to talk to the health care team and make important decisions. The relationship between the caregiver and the patient affects how well this works. Disagreements between the patient and caregiver can make important decisions harder to make and affect treatment choices. In addition to talking to the health care team, the caregiver may also do the following:
- Take on many of the patient's household duties.
- Schedule hospital visits and plan travel to and from the visits.
- Work through the health care system for the patient.
- Arrange for home care.
- Take care of insurance matters.
During the active treatment phase, a caregiver needs to meet the demands of supporting the patient as well as the demands of home, work, and family. This may be physically and emotionally exhausting.
When the patient moves from one care setting (such as the hospital) to another (such as the home), it can be stressful for the patient and the caregiver. The patient usually would rather be at home, which is a familiar and comforting place. The return home usually means more work for the caregiver.
In addition to hands-on patient care, the caregiver may also do the following:
- Be a companion to the patient.
- Continue doing many of the patient's household duties.
- Take care of medicines and meals.
- Schedule doctor visits, plan travel to and from the visits, and go with the patient to them.
- Arrange for home visits by therapists or other professionals.
- Deal with medical emergencies.
- Take care of insurance matters.
- Work through the health care system for the patient.
Caregivers worry about how they'll be able to do all this and also take care of themselves. The caregiver sometimes has to give up social activities and miss work. This can all be very hard and very tiring in a physical and emotional way for both the caregiver and the patient. These demands can be especially hard on older caregivers.
Some patients and caregivers expect life to go back to the way it was before the cancer was diagnosed and this may not happen. Caregiver stress may continue after the patient's treatment ends, as roles change once again. Some caregivers have problems adjusting for the first year after the end of treatment. Part of this is caused by worry that the cancer will come back. When the caregiver is the partner or spouse of the cancer survivor, there may be sexual problems, also. Studies have shown that these adjustment problems usually do not last long. Problems with adjusting that can last a long time include the following:
- Problems in the relationship between the caregiver and the patient.
- Poor communication between the caregiver and the patient.
- Lack of social support.
Caring for a patient at home at the end of life brings a new set of challenges for the caregiver. The patient depends even more on the caregiver for physical and emotional support. The patient's symptoms also may be more difficult to manage. The caregiver may feel distressed by these new challenges and by not being able to take part in activities and interests that are important to him or her. The caregiver may feel even more distressed if the patient goes into hospice care. Studies have shown that caregivers have a lower quality of life and poorer health when giving the patient end-of-life care than they do during active treatment.
Some hospital or hospice programs offer end-of-life support services to improve the patient's quality of life and help both the caregiver and the patient. End-of-life support services include the following:
- A team approach helping the patient and family with their physical, emotional, social, spiritual, and economic needs in order to improve the quality of life of the patient and caregiver.
- Including the caregiver in medical decisions and managing the patient's symptoms.
- Watching the caregiver for signs of distress and work with him or her to get the kind of help they need.
Roles for the Family Caregiver
Most people think first of the physical care given by a family caregiver, but a caregiver fills many other roles during the patient's cancer experience. In addition to hands-on care, the caregiver may also do the following:
- Manage the patient's medical care, insurance claims, and bill payments.
- Be a companion to the patient.
- Go with the patient to doctor appointments, run personal errands, cook, clean, and do other housekeeping chores.
- Find doctors and specialists needed and get information that may be hard to find.
- Help the patient connect with family, friends, neighbors, and community members.
A family caregiver faces the tough job of taking on new roles and challenges as the patient's needs change over time.
Caregivers may take on the roles of decision maker, patient advocate, and communicator.
Doctors, caregivers, and patients are partners in making decisions. Making a decision involves getting the right information in a way that it can be understood. Cancer patients have many information needs. They want to know about staying healthy, tests and treatments, side effects and symptoms, and emotional issues.
In order to make treatment decisions, caregivers and patients often want more information and they may look for help and information from sources other than the doctor. It's common for patients and their families to do the following:
- Use the Internet to search for more information on the patient's cancer and its treatment.
- Check on the information given by the doctor.
- Look into other treatments or complementary or alternative medicine.
- Ask for advice from family and friends.
Information from outside sources is sometimes wrong or may be different from what the doctor said. It's important to get information that can be trusted and to talk to the doctor about it. Most libraries can help people find articles about cancer in medical journals and cancer information written for patients and the public. Good places to get information include government agencies, cancer centers, and cancer organizations.
The family caregiver knows and understands the needs of the patient. The caregiver becomes an advocate for the patient by giving this information to the health care team. Although a caregiver may not have a medical background, daily contact with the patient gives the caregiver important information that helps the health care team help the patient. Information about the patient's symptoms and problems can help the doctor make better treatment plans and improve the patient's chance of getting better.
As the patient's advocate, the family caregiver may do the following:
- Talk with the health care team about the patient's needs and wishes for the patient.
- Get information that may be hard to find.
- Find doctors and specialists needed.
- Watch the patient for changes and problems.
- Help the patient follow treatments.
- Tell the health care team about any new symptoms or side effects and ask for help to treat them.
- Help the patient make healthy changes and follow healthy behaviors.
- Pay the patient's bills and take care of insurance claims.
Good communication between the doctor, patient, and caregiver can improve the patient's health and medical care. The family caregiver will often take on the role of speaking for the patient while keeping the patient included in decision making. Good communication helps both the doctor and the caregiver get the information they need to support the patient. Doctors need to hear about patients' concerns and caregivers need to understand the disease and treatment options. Poor communication may cause confusion about treatment. This can affect choices made about treatment and the patient's chance of getting better.
Cultural differences between the doctors and the caregiver or patient can affect communication. In some cultures, it's the custom to keep a life-threatening diagnosis a secret from the patient and avoid talking about the disease. However, this can be stressful for caregivers and increase their feelings of loneliness and responsibility. Caregivers should tell the health care team if they think cultural beliefs may affect how they talk about the cancer and making treatment decisions.
The Caregiver's Quality of Life
Family caregivers usually begin caregiving without training and are expected to meet many demands without much help. A caregiver often neglects his or her own quality of life by putting the patient's needs first. Today, many health care providers watch for signs of caregiver distress during the course of the patient's cancer treatment. When caregiver strain affects the quality of caregiving, the patient's well-being is also affected. Helping the caregiver also helps the patient.
Psychological distress is the most common effect of caregiving on the caregiver's quality of life. Caring for a cancer patient is a difficult and stressful job. Caregiver distress comes from the practical demands of the caregiver role as well the emotional ones, such as seeing the patient suffer. Family members seeing a loved one with cancer may feel as much or more distress than the patient does. Distress is usually worse when the cancer is advanced and the patient is no longer being treated to cure the cancer.
Caregivers who have health problems of their own or demands from other parts of their lives may enter the caregiving role already overwhelmed. For an older adult caregiver, problems that are a part of aging may make caregiving harder to handle.
The caregiver's ability to cope with distress may be affected by his or her personality type. Someone who is usually hopeful and positive may cope better with problems of caregiving.
Cancer patients often need a lot of physical help during their illness. This is physically demanding for the caregiver, who may need to help the patient with many activities during the day such as:
- Use the toilet.
- Change position in bed.
- Move from one place to another, such as from bed to toilet.
- Use medical equipment.
The amount of physical help a patient needs depends on the following:
- Whether the patient can do normal activities of daily living, like dressing and walking.
- The amount of fatigue the patient has.
- The stage of the cancer.
- The symptoms and how bad they are.
- Side effects of the cancer and the cancer treatments.
As caregivers try to meet the physical demands of caregiving, they may not get enough rest and may not take care of their own health. Healthy habits such as exercise, a healthy diet, and regular medical checkups may be pushed to the side. Health problems the caregiver already has may become worse, or they may have new health problems.
Caregivers often have less time to spend with friends and in the community as their days are filled with caring for the cancer patient. If there are problems in the relationship between the caregiver and the patient, the caregiver may feel even more alone.
In the beginning, there may be a lot of support from friends. The caregiver may be able to continue working and keep up work relationships. When cancer care continues for a long time, the caregiver may need to stop working and friends may call or visit less often. Caregivers can find support in other places, such as caregiver groups and cancer organizations, where they can talk with other families. Some caregivers find it helpful to join a support group or talk to a counselor, psychologist, or other mental health professional. Others also find it helpful to turn to a leader in their faith or spiritual community.
There are many financial costs of cancer. Families must pay insurance deductibles, copayments, and for services that are not covered by insurance, such as transportation and home care help. Some caregivers give up their jobs and income so they can stay home with the patient, which makes it harder to pay for everything.
Caregivers who work may have less distress if they are able to take leave from work under the Family and Medical Leave Act (FMLA). FMLA applies to businesses with at least 50 employees. It allows employees to take time off from work for their own illness or a relative's serious medical condition without losing their jobs or benefits. Caregivers may take up to 12 weeks of leave.
Feelings of spiritual well-being may help lower the caregiver's stress. Keeping faith and finding meaning and hope have been shown to decrease the effect of caregiving stress on mental health. Spiritual well-being may help some caregivers be more hopeful, find meaning in the cancer experience, and be more accepting of what is.
Caregivers become caregivers for many different reasons. Some feel it is natural to care for someone they love. Sometimes there are practical reasons, such as no insurance or money to pay for other help. Whatever the reasons, giving care and support during cancer isn't easy, yet many caregivers find something positive from it.
Caring for a person with cancer causes many caregivers to look at life in new ways. They think about the purpose of life and they often focus on what they value most. For some caregivers, looking for meaning is a way to cope.
Some caregivers will have the following rewards:
- Find they can be strong during bad times.
- Have a better sense of self-worth or personal growth.
- Feel closer to the cancer patient.
Getting support from health care professionals may help caregivers find more positive rewards.
Assessing Caregiver Needs
Caregiver assessment helps the health care team understand the caregiver's everyday life, recognize the many jobs done by the caregiver, and look for signs of caregiver strain. Caregiver strain occurs when caregivers are not comfortable in their roles or feel they cannot handle everything they need to do. Caregiver strain may lead to depression and general psychological distress. If the caregiver feels too much strain, caregiving is no longer healthy for either the caregiver or the patient.
A caregiver assessment should look at not only what the patient needs the caregiver to do, but also what the caregiver is willing and able to do. Caregiver strain may occur when the family caregiver does not have the knowledge needed to care for the patient. The health care team can support the caregiver in this area.
Family caregivers report many problems with their caregiving experiences. Assessment is done to find out what the problems are, in order to give the caregiver the right kind of support. Support services can help the caregiver stay healthy, learn caregiving skills, and remain in the caregiving role, all of which help the patient as well.
Some of the factors that affect caregiver strain:
- The number of hours spent caregiving.
- How prepared the caregiver is for caregiving.
- The types of care being given.
- How much the patient is able to do without help (such as bathing and dressing).
There is no standard tool for caregiver assessment. It may be different for each caregiver and family. Some of the factors assessed are culture, age, health, finances, and roles and relationships. Support services can then be chosen to help where the caregiver needs it.
Studies have shown that a family's culture affects how they handle the caregiver role. In some cultures, the family chooses not to get any outside help. Caregivers who have no outside help or help from other family members are usually more depressed than those who receive help from other sources.
Some of the reasons caregivers do not get outside help is that they:
- Don't want to share family matters with others.
- Can't find outside help.
- Don't trust social service providers.
- Don't know how hospice care can help them.
Caregivers may have issues related to age and health that increase their risk for caregiver strain:
- For an older adult caregiver, issues that are a part of aging may make caregiving harder to handle. Older caregivers may have health problems, live on fixed incomes, and have little social support. As they try to meet the demands of caregiving, older caregivers may not take care of their own health. This can make their health worse or cause new health problems. Caregiver strain in older caregivers may lead to an earlier death than noncaregivers the same age.
- Middle-aged and younger caregivers who have jobs and children or other family members to care for are often strained by the caregiving role. These caregivers try to meet the needs of work and family and give up much of their social life while caring for the patient.
Families with low household incomes may not be able to afford the costs of caregiving. When the family cannot pay for costs related to treatment, the patient's recovery may be affected. Caregiver distress increases.
As the number of roles the caregiver must fill increases, the risk of caregiver strain also increases. Given too many roles to fill, the caregiver will not have the time and energy to do them all. For example, caregivers who have a job and also care for children report high levels of stress. However, working while caregiving can also be helpful. Time away from the caregiving role and the social support from co-workers can give the caregiver some relief.
Roles and relationships among family members can be affected by caregiving. A caregiver assessment looks at family relationships to see if there is risk of caregiver strain.
Help for the Caregiver
Although caregiver assessments are used to plan support for the family caregiver, they are not always done. It's important for caregivers to ask for help when they need it. Many people who were once caregivers say they did too much on their own. Some wished that they had asked for help sooner. The best time to find out where to get help is when the patient is diagnosed with cancer. All through caregiving, it's important to watch for signs of caregiver strain and get help right away. Caregivers who take care of their own needs have the strength to carry on and be a better caregiver.
Family caregivers usually have many questions and feel unsure about some things when they begin caregiving. Information and education can help caregivers feel less stressed and more comfortable in their role.
Since cancer treatment can last for a long time and the disease goes through many changes, the kind of information caregivers need changes over time. Important times for the caregiver to receive information include the following:
- At diagnosis.
- When the patient is in the hospital.
- When care at home begins.
- At the start of new treatments.
- If the cancer recurs (comes back).
- At the end of life.
There are many ways caregivers can get information:
- Call a cancer information specialist at 1-800-4-CANCER (1-800-422-6237).
- Search the Internet.
- Ask questions.
- Read booklets, pamphlets, fact sheets, and information cards.
- Use touch-screen and other computer information systems at hospitals and doctor offices.
Facts about the cancer
- How the cancer will change over time.
- Symptoms the patient may have.
- What the treatments may be.
- Side effects that may be caused by the cancer or the treatments.
What the caregiver is expected to do
Caregivers report that they learn most of their caregiving skills by trial and error and would like more information from the health care team. Some of the skills caregivers may need to learn are:
- How to place pillows to make the patient comfortable.
- How to move the patient.
- How to help the patient walk.
- How to give medicines and treatments.
- What to do in medical emergencies.
- How to solve problems.
- How to take care of themselves.
Many caregivers also want to know about getting outside help to care for the patient at home.
How to manage symptoms and side effects
When the caregiver is trained in how to help the patient manage side effects of treatment and symptoms such as pain and fatigue, the patient is more likely to have the energy and will to continue with treatment.
Pain is a symptom that is a serious concern for cancer patients and for their caregivers. Most family caregivers know little about pain and how to manage it. For pain to be controlled well, the patient needs to receive the pain medicines as prescribed by the doctor. A caregiver's knowledge and beliefs about pain medicine may affect the patient's pain relief. A caregiver who is afraid the patient will become addicted or take an overdose may give the patient too little pain medicine. When the caregiver knows the facts about pain medicines and the right way to use them, the patient is more likely to have better pain control. The caregiver can talk to a doctor who is expert in treating pain and get the information and emotional help he or she needs to control the patient's pain.
Caregivers may need to learn the following:
- What medicines to use and how and when to give them.
- How to tell if a medicine is working and common side effects of the medicine.
- How to know when the medicine is causing side effects.
The health care team also can help caregivers learn ways to manage symptoms without medicine, including the following:
- Hot or cold compresses (pads placed against the skin).
- Helping the patient use his or her energy wisely.
- Rest and relaxation.
- Distraction (taking the patient's attention away from the symptom).
Caregivers may also need information on other common side effects and symptoms, including:
- Fatigue, drowsiness, and sleep problems—See the PDQ summaries on Fatigue and Sleep Disorders.
- Nausea, vomiting, anorexia, and cachexia—See the PDQ summaries on Nausea and Vomiting and Nutrition in Cancer Care.
- Anxiety, mood disorder, and depression—See the PDQ summaries on Adjustment to Cancer: Anxiety and Distress, and Depression.
Caregivers can receive support from programs that teach them ways to cope with caregiving stress. These programs give information, improve caregiving skills, and help caregivers feel in control and more hopeful. Some programs train on one topic, such as teaching the caregiver how to solve problems or manage patient symptoms, like pain. Other programs train the caregiver in several areas of caregiving, and these types of programs may help caregivers feel better overall. Talk to a member of your health care team or call your local hospital to see if these programs are offered in your area.
One program called COPE (which stands for Creativity, Optimism, Planning, and Expert information) trains caregivers in how to solve difficult caregiving problems, make plans for their individual situations, and feel more positive. This program has been shown to decrease stress in some caregivers.
The Family Caregiver Cancer Education Program teaches caregivers how to manage symptoms, communicate better, manage roles, relationships, and finances, and take care of themselves. Caregivers have more confidence and feel they learned useful information after taking this program. Over time, they report feeling healthier.
Training in specific skills helps improve quality of life for many caregivers. Programs that offer caregiver training by nurses who visit the home have worked very well. These nurses prepare patients and caregivers for changes in the level of care, teach them communication skills, visit patients at home, and make sure care continues all through the different phases of treatment.
Counseling helps caregivers deal with the emotions that come with the demands of caregiving. The health care team can recommend support groups or refer caregivers to mental health professionals. This kind of support may lessen anxiety and depression and help the caregiver feel more positive, more able to cope, and that they have control over the situation.
When taking care of a cancer patient, family members need to work together. There may be problems and conflicts in some families, and the stress of caring for a relative with cancer can bring up old issues or make new ones. These conflicts may cause communication problems within the family and with the health care team. When there are conflicts like this, it may help to have family meetings with the health care team.
During a family meeting, the whole family talks with the health care team. Family meetings help the health care team and the caregivers connect and work together. It is important to include the family spokesperson and all caregivers. While everyone may be trying to do what they think is best for the patient, family members may disagree about what this means. During family meetings, family members can talk about how they feel or decide what kind of help they can give. Each person may have certain skills to offer. Family meetings may also help with the following:
- Identify caregivers' concerns.
- Give clear information about treatment.
- Make it easier to make decisions about treatment choices and about care at the end of life.
- Make sure the caregivers know that symptoms and side effects will be controlled.
- Make sure that caregivers know that the wishes of the patient are being considered.
Family meetings are most helpful when:
- There is a clear list of what is going to be discussed.
- A member of the health care teams acts as the meeting leader.
- Family members and caregivers are given the chance to ask questions and discuss concerns.
- Family members and caregivers are free to talk about painful emotions and receive the help of trained professionals who care about them.
At the end of the meeting, the health care team may go over what was decided and plan the next steps.
Home care services for the cancer patient also give the caregiver support. State or local health departments usually have a list of licensed home care agencies. Some of the services that home care agencies provide include the following:
- Visits from nurses, aides, therapists, and social workers.
- Help with running errands, making meals, and bathing.
- Delivery of medicine.
- Use of medical equipment.
Hospice care is given to patients who are near the end of life and are no longer being treated to cure or control their cancer. The goal of hospice is to help patients live each day to the fullest by making them comfortable and relieving their symptoms. Family caregivers may need more training and advice to feel comfortable doing what's needed to care for the patient during the final stages of cancer. The family caregiver often feels as much emotional distress as the patient does during this time. A hospice care team helps with the emotional, social, and spiritual needs of patients, caregivers, and families.
To Learn More About Caregiving
For more information from the National Cancer Institute about caregiving, see the Coping with Cancer: Supportive and Palliative Care page of the NCI Web site.