Vulnerable and Needing Support, Too
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By Leslie Bokunewicz

Vulnerable and Needing Support, Too

Caregiving can take a toll on your mind and body

By Leslie Bokunewicz


Forty-nine-year-old Robin Straight recently looked back at photographs from the time she was caregiving for her mother, and she was surprised by what she saw. “I looked terrible,” says Straight, a volunteer for the West Virginia chapter of the National Family Caregivers Association. Depression, weight loss, fatigue, digestive problems, violent headaches, neck pain and other illnesses beset her throughout the eight years she cared for her mother, who had advanced lymphoma and skin cancer.

“I think one of the downfalls for caregivers is that they don’t realize what they’re going through at that time,” she says.

Unfortunately, health decline from chronic stress, poor nutrition, sleep deprivation and untreated illnesses isn’t uncommon for the 44 million adult American caregivers. A survey of 528 caregivers released last September found widespread health problems, including lack of energy and sleep, stress or panic attacks, physical aches and pains, headaches, weight gain or loss, digestive problems, shortness of breath and high blood pressure. Ninety-one percent reported suffering from depression; 81 percent claimed caregiving worsened their depression.

RESOURCES:
National Family Caregivers
Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895-3944
Telephone: 1-800-896-3650 or
1-301-942-6430
E-mail: info@thefamilycaregiver.org
www.nfcacares.org

Family Caregiver Alliance
180 Montgomery Street, Suite 1100
San Francisco, CA 94104
Telephone: 1-800-445-8106 or
1-415-434-3388
E-mail: info@caregiver.org
www.caregiver.org

National Alliance for Caregiving
4720 Montgomery Lane, 5th Floor
Bethesda, MD 20814
Telephone: 1-301-718-8444
www.caregiving.org
All of the caregivers were in fair or poor health at the time of the survey and reported a decline in their well-being as a result of the stress from caregiving. The survey was conducted by the National Alliance for Caregiving, a nonprofit group, and Evercare, a division of the health insurance company UnitedHealth Group.

Looking back, nearly half of the surveyed caregivers said they didn’t receive advice regarding their health from their doctors or the doctors of the people for whom they cared. Of those caregivers, many felt that minimal involvement from a health care provider, such as a simple “How are you?” or a reminder to eat right could have helped alleviate the stress associated with their caregiving, potentially reducing the physical and emotional effects they had experienced.

It’s important to address caregivers’ health problems before they arise, so families can be better prepared for what they’re about to go through, says psychologist Steven Zarit, a professor of human development at the Pennsylvania State University in University Park, Pa. “Families have always told me, ‘I wish I knew then what I know now.’ ”

Various studies have examined the influence of stress on immune function and health. When beleaguered by chronic stress, the immune system may fail to fight off illness, illnesses may last longer, wounds may not heal as quickly, infection may result if an injury occurs, and the body may respond poorly to vaccinations.

Research by neuroendocrinologist Robert Sapolsky of Stanford University in Palo Alto, Calif., has found that chronic stress can also have effects on memory. Over time, the frequent release of stress-related hormones can disrupt and suppress memory-related functions in the brain, interfering with concentration, learning and short-term memory.

Sapolsky says that if a stressor—such as the stress related to caregiving—is inevitable, appropriate measures can be taken to lessen its toll on the body. For example, people under stress may want to talk to a health professional about their frequent sources of stress, when it is likely for these stressors to occur, and the potential emotional and physical impacts of these stressors. Having this information, along with social support from family and friends, may allow caregivers to be more optimistic and have a sense of control over what they experience, says Sapolsky. Moreover, the caregiver will be “less likely to feel stressed, less likely to activate the body’s stress-response and less likely to get a stress-related disease.”

According to Zarit, caregivers should have a formal assessment of their personal situations, including their health needs. The ideal assessment would involve a health care provider, such as a social worker or a nurse, identifying the caregiver’s problems, needs and roles, he says. The provider should evaluate the caregiver to ensure effective treatment, and provide suggestions for relieving potential stressors through coping interventions and social support.

Currently, such evaluation hasn’t been widely adopted. For that reason, it’s important as a caregiver to ask for help from your physician or the physician of the person for whom you are caring. Make the doctors aware of your situation so they can provide assistance or refer you to a professional who can.

“Caregiver assessment is critical,” agrees nurse-scientist Laurel Northouse of the University of Michigan in Ann Arbor. Northouse’s research currently focuses on caregivers’ stress levels and determines which “dose”—as she calls it—of health care intervention each person needs. Because little research related to caregiver stress and health has been done, Northouse says that it’s vital for caregivers to participate in clinical trials and other studies related to caregiving. More comprehensive information from research may advance health care closer to a more widely accepted, structured form of caregiver assessment.

There is not enough research being done on caregivers, agrees health policy researcher Carol Levine, the director of the Families and Health Care Project at the United Hospital Fund, a health services research and philanthropic organization in New York City. It’s important to impress upon health care providers that caregivers are making an enormous contribution to the care of patients, she says. In order for caregivers’ efforts to have their full effect, their mental and physical health must be better understood.

 

CHRONIC STRESS COPING MECHANISMS

  • Personal relationships and social support
  • Treatment for illnesses and routine physicals
  • Involvement in pleasurable activities
  • Proper nutrition
  • Adequate sleep
  • Exercise

Sources: National Consensus Report on Caregiver Assessment (2006); and Caregivers in Decline: A Close-up Look at the Health Risks of Caring for a Loved One (2006).


SYMPTOMS AND RISKS ASSOCIATED WITH CHRONIC STRESS AND CAREGIVING

  • Anxiety
  • Depression
  • Headaches
  • Exhaustion
  • Heart disease
  • Hypertension
  • Ulcers/gastrointestinal problems
  • Slower wound healing
  • Infection associated with injury
  • Poor immune function; decreased response to vaccinations
  • Increased use of alcohol, cigarettes and other medications
  • Unhealthful eating habits
  • Lower perceived health status
  • Lack of adequate sleep

Source: National Consensus Report on Caregiver Assessment: Volume I, Principles, Guidelines and Strategies for Change (2006).