Get Mad Before You Get Old: Caring for Caregivers

Chronic illness takes its toll in many ways, including decreased quality of life and increased mortality. But while the suffering of patients is well known, the effect such illness has on caregivers can be just as crippling, and even deadly.

According to the National Alliance for Caregiving, more than 44 million people are involved in caring for a friend or relative. The majority of family caregivers are women, typically a 46-year-old woman who is married and employed, who cares for her widowed mother. Caring for others can be enormously stressful, leading to a downward spiral where the health of the caregiver declines, negatively affecting their ability to provide care. Caregiving can be a physically demanding job, but it is just as demanding emotionally and mentally. Depending upon their medical conditions, many patients may require their caregivers’ continual vigilance. Caregivers also have to deal with the frustration of navigating the health care system, balancing work and family, and possibly the most damaging – watching loved ones in their charge suffer.

Declines in health universal among caregivers

"For many caregivers, this stress results in poorer sleep, decreased appetite and weight loss, and ultimately even impaired immune function, cardiovascular disease, and high blood pressure."

A 2006 survey conducted for Evercare - a care coordination program for people who have long-term or advanced illness, are older, or have disabilities - and the National Alliance for Caregiving, looked at the health risks of caring for a loved one.

Alarmingly, all of the respondents in the study said that caregiving had made their own health worse. Nine in ten said they suffered from depression, and two-thirds of those said their depression was moderate or severe. Eight in ten said caregiving made their depression worse.

Stress seemed to be the most prevalent health issue, stemming from worry about their patient and a feeling of being overwhelmed with responsibility for work, home, and family. For many caregivers, this stress results in poorer sleep, decreased appetite and weight loss, and ultimately even impaired immune function, cardiovascular disease, and high blood pressure.

Even high amounts of stress can be compensated for with the appropriate amount of self-care, but ironically, caregivers find it difficult to take care of themselves with the same care they provide others. More than eight in ten of the survey respondents said that they slept more poorly, and most reported declining eating (63 percent) and exercise (58 percent) habits.

Many reported that they went in for routine medical screenings less often, were more likely to miss doctors’ appointments, and generally put the needs of their families and their patients before their own, leaving little time to care for themselves in even the most basic ways.

What can help?

"Our society needs to support caregivers by providing resources and services that assist them in taking care of themselves, for the benefit of their own health and those for whom they care."

Fortunately, there are ways to help. The surveyed caregivers expressed interest in programs that save them time, relieve them of their responsibilities for a while, relieve stress, and make them feel cared about.

More than six in ten said they would be at least somewhat likely to use a service that allowed them to speak with an expert about the factors contributing to their stress. About the same percentage would use a mobile health service that allowed them to receive care in their own neighborhood.

Other ways to help caregivers included finding ways to help them perform their caregiving tasks with less effort and stress, as well as ways to enlist others to help share the load. Even if these services are available, it remains important to educate the caregiving population about their existence and encourage them to go, and to make sure that the services are affordable.

As our population ages, so will the prevalence of chronic diseases that require special care. Our society needs to support caregivers by providing resources and services that assist them in taking care of themselves, for the benefit of their own health and those for whom they care.

Alzheimer's Disease Resource for Community Groups

Caring for a loved one with Alzheimer’s disease can be particularly demanding and stressful. Alzheimer’s disease is a devastating neurological disease that destroys brain function, resulting in a slow, painful decline and ultimately death. According to the Alzheimer’s Association, 70 percent of those with the disease live at home, where they receive care from family and friends. People with Alzheimer’s die an average of four to six year after diagnosis, but some suffer for up to 20 years.

To address the needs of those caring for someone with Alzheimer’s, the Alliance for Aging Research and the National Family Caregivers Association developed a resource for family caregivers in 2006. The kit focuses on teaching caregivers to care for themselves.The kit features a leader's guide and DVD to assist community groups in hosting workshops for family caregivers. To order a copy of the toolkit, “Alzheimer’s Disease: Helping Yourself Help a Loved One,” contact the Alliance for Aging Research at 202-293-2856.