In 2012, 9.6 million adults in the United States had lived with a serious mental illness in the past year. Also, 20 percent of adults over age fifty have depression, and about 11 percent suffer from anxiety disorders. And what about the people who care for an aging population? What challenges do family caregivers face when supporting and providing for adults with chronic physical and mental illness?
The report, “Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions,” published in August by the AARP Public Policy Institute and the United Hospital Fund (UHF), with support from the John A. Hartford Foundation and the AARP Foundation, sheds some light on the stresses and challenges that family caregivers of people with these conditions face.
The report is the third in the “Insight on the Issues” series, based on analyses from a December 2011 national survey of 1,677 family caregivers. Earlier findings were published in the AARP/UHF report Home Alone: Family Caregivers Providing Complex Chronic Care and earlier publications in the series.
The Stresses of Family Caregiving
According to the survey results, nearly half of family caregivers performed medical/nursing tasks (such as medication management and wound care) in addition to assisting with both activities of daily living (such as bathing and dressing) and instrumental activities of daily living (such as transportation and shopping). And about half of this group provided care for a family member with at least one behavioral or cognitive health condition.
Authors Susan C. Reinhard of AARP and Sarah Samis and Carol Levine of UHF define cognitive impairments as memory problems, dementia, or Alzheimer’s disease, and behavioral conditions as depression, anxiety, or other mental illness.
In addition, care recipients with behavioral and/or cognitive conditions were more likely to have chronic physical diagnoses such as stroke/hypertension, musculoskeletal problems, cardiac disease, and diabetes than care recipients who did not have behavioral or cognitive conditions. Care recipients with both behavioral health and cognitive conditions were most likely to have undergone ambulatory surgery or to have gone to a hospital emergency department.
“Caring for a family member is hard enough when the family member is on the same page,” said co-author Carol Levine, director of the Families and Health Care Project for UHF, in a press release. “But when that family member has a cognitive impairment, like Alzheimer’s, or a behavioral issue, such as depression—things that can interfere with daily life as well as decision-making—the burden on the caregiver is multiplied.”
In providing care for these recipients, more than half of family caregivers reported the following tasks as the hardest: helping with incontinence, wound care, and medications, and preparing food for special diets, according to the report. Caregivers who said that medication management was difficult and were caring for people with “challenging behaviors” were more than 2.5 times as likely to say it was hard because of the relative’s “lack of cooperation,” the report says. People with challenging behaviors have cognitive and/or behavioral conditions, a spokesperson from the UHF explained in an e-mail.
So what would help make medication management easier? Caregivers of people with challenging behaviors were more likely to suggest getting “more cooperation” from the patient or having assistance from another person compared with their counterparts caring for someone without those conditions. In fact, two-thirds of caregivers of people with challenging behaviors had little or no training and learned how to administer at least some of these medications on their own, the report notes.
Most of such caregivers also felt they had no choice as to whether to provide medical/nursing tasks for their family members. Some cited pressure from other family members. Also, such caregivers often had higher levels of stress than their counterparts did.
But even though family caregivers of recipients with behavioral and/or cognitive conditions felt more pressure, stress, and depressed feelings, many also believed their efforts are worth it, the report notes. Sixty percent of caregivers who performed medical/nursing tasks for such recipients believed that the caregiving helped keep their family member out of a nursing home (compared with 43 percent of caregivers of people without these conditions).
What Can Be Done to Assist Family Caregivers in These Situations?
The report introduces six recommendations, including the following:
- Integrate behavioral health programs with medical care;
- Set up specialized respite and adult day-care programs for family members who have both chronic illnesses and behavioral and cognitive conditions; and
- Provide more evidence-based training for family caregivers of those with challenging behaviors.
“All caregivers need training and support,” write the authors. “Caregivers who are responsible for people with challenging behaviors are among those most in need of assistance.”
“And currently,” added Levine in the press release, “our health care system [in the United States] often doesn’t provide the kind of support that can make a difference.”