Family Caregivers in Cancer (PDQ®)

At Diagnosis

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.

During Treatment at the Hospital

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.

During Care in the Home

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.

After Treatment Ends

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.

At the End of Life

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.

See the PDQ summary on Last Days of Life for more information about end-of-life care.

Decision Maker

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.

Advocate

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.

Communicator

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 is the custom to keep a life-threatening diagnosis a secret from the patient and avoid talking about the disease. Sometimes it is left to the caregiver to tell the patient the truth about a serious or terminal illness. 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.

Psychological Issues

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.

Physical Issues

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.
• Eat.
• 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.

Social Issues

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. As caregivers struggle to meet the ongoing demands of caregiving, they may want more help from family and friends. 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.

Money Issues

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.

Spiritual Issues

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. See the PDQ summary on Spirituality in Cancer Care for more information about spirituality and religion in cancer care.

Rewards of Caregiving

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.

Culture

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.

Age and health

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.

The costs of care

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.

Roles and relationships

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.

Education and Information

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. Programs that introduce patients and their caregivers to new cancer facilities and services may help.

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.
• Learn from DVDs that teach caregiving skills.

Caregivers often want to know facts about the cancer, caregiving skills, and how to manage symptoms and side effects.

• Facts about the cancer

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  How the cancer will change over time.

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  Symptoms the patient may have.

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  What the treatments may be.

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  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. Moving the patient safely and decreasing the risk of falls are skills caregivers say are the most difficult. Some of the skills caregivers may need to learn are:

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  How to move the patient.

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  How to help the patient walk.

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  How to place pillows to make the patient comfortable.

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  How to give medicines and treatments.

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  What to do in medical emergencies.

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  How to solve problems.

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  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:

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  What medicines to use and how and when to give them.

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  How to tell if a medicine is working and common side effects of the medicine.

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  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:

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  Massage.

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  Hot or cold compresses (pads placed against the skin).

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  Helping the patient use his or her energy wisely.

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  Rest and relaxation.

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  Distraction (taking the patient's attention away from the symptom).

See the PDQ summary on Pain for more information.

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.

Coping Skills

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

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.

Family Meetings

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.

See the PDQ summary on Communication in Cancer Care for more information about communication.

Home Care Help

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 for the Cancer Patient

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.