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March 3, 2004
News this month Caring for family members with chronic, disabling conditions at home is increasingly common in American households. Currently about six million adults provide long-term, unpaid care to loved ones over the age of 50. Nearly one-third of those who care for terminally ill loved ones at home may suffer from depression.
Although most people prefer being cared for at home rather than being institutionalized, caregiving can be very stressful to caregivers. Two recent studies document high rates of depressive symptoms among caregivers. Caring for the terminally ill “These are people who are highly treatable, according to Prigerson, “yet no one is identifying, diagnosing or treating them.” Screening tool The researchers interviewed 76 hospice-patient caregivers using this scale and discovered that 30 percent of the respondents experienced what could be described as a major depressive disorder. “What we're saying is that simply watching a loved one suffering has its own, discrete negative psychological consequences that can affect the caregiver's well-being,” said Prigerson. “What we need to do is take a step back and think about how we can help them deal with the mental health aspect of their experience.” Ultimately, she says, the goal should be to screen caregivers who are at risk and use the assessment tool to identify ways to minimize the negative consequences that follow from exposure to serious distress in a dying loved one. Caregivers exhibited high levels of depressive symptoms while caring for a relative with dementia.
Caring for dementia patients According to Schultz, the findings show new approaches in end-of-life care for dementia patients may be needed to address the health and well-being of the caregivers as well as the patient. Studying caregivers Half of the caregivers reported spending at least 46 hours per week—equivalent to a full-time job—assisting patients with activities of daily living that ranged from preparing their meals to bathing and dressing them. In addition, more than half of the caregivers felt they were “on duty” 24 hours a day and were under stress because they felt the patient suffered frequent pain. Caregivers also felt stress because they had to end or reduce their own employment to meet the demands of taking care of their loved ones. “This study gives us insight into the experiences of many of the six million
people who provide long-term, unpaid care to disabled elderly persons in their
families,” said Schulz. “At this moment, more than two million people in the
United States have dementia, and a significant number of those patients are
cared for by a family member at home. The service these people provide saves
the health care system billions of dollars a year, while the caregivers themselves
endure both emotional and financial stress. Because the number of people in
this situation will increase markedly over the next two decades, this study
should serve as notice that we as a society may need to reassess how we support
family caregivers.”
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For the 12th year in a row, Yale-New Haven has been highly ranked by U.S. News & World Report for its programs in psychiatry.
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 Caregiver depression: Addressing a growing mental health issue I see symptoms of depression among people who are caring for loved ones at home all the time, and I consider it a major public health problem. The statistics that we have indicate one in four U.S. households provide care for aging loved ones, and some studies indicate as many as half of these caregivers experience some degree of depression. “I consider [caregiver depression] a major public health problem”
What are the signs? The following are the nine classic symptoms a physician looks for when considering a diagnosis of depression. A major depressive episode is present if five or more of the following nine symptoms are present during the same two-week period. At least one of the five symptoms must be either a depressed mood or loss of interest or pleasure.
Aging caregivers are often difficult to diagnose because they may not present with these typical symptoms of depression. They may visit their doctor with complaints of backaches or headaches and general fatigue. Experts estimate primary care physicians miss between 30 and 50 percent of the cases of depression among their aging caregiver patients. “Depression is a significant risk factor
for chronic medical conditions such as heart disease, cancer and diabetes.”
What are the long-term consequences? Depression is the second highest risk factor for death among heart patients, second only to a weak ejection fraction. Thirty to 50 percent of heart patients suffer from depression, and they are six times more likely to die than heart disease patients who are not depressed. Patients who are being cared for by depressed individuals are also at risk. They may not be given medications regularly, and they are more likely to be placed in nursing homes and other institutionalized settings, which costs society an estimated $200 billion each year. What factors influence caregiver depression? Treatment “Family members should be alert to signs of depression among the caregivers in their families and urge people to seek treatment as soon as possible”
What to do? Respite programs that give family members a break from their caregiving responsibilities helps as well. Families should come up with a plan to regularly relieve caregivers so they have time to take care of themselves and enjoy other activities. Research has found that caregivers who use adult day care services decreased their own care-related stress and depressive symptoms significantly. Several programs are aimed at primary care physicians who may be best positioned to recognize and treat caregivers. Tools such as the scale developed by Dr. Prigerson can be helpful in identifying those most at risk. There are also several national programs directed at supporting those who care for patients at home. The U.S. Department of Health and Human Services and the Robert Wood Johnson Foundation has funded a demonstration project in three states that issues monthly cash allowances for Medicaid recipients to hire their own caregivers, including members of their families and friends. Public policy decision makers are grappling with ways to support and
sustain those who are the backbone of our long-term care system—family
and informal caregivers who take care of loved ones at home. Dr. Tampi is a geriatric psychiatrist at the Yale-New Haven Psychiatric Hospital and an assistant professor of psychiatry at Yale University School of Medicine.
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