Caring for a loved one with dementia or other behavioral health conditions has major impact on quality of life.
The United Hospital Fund and AARP Public Policy Institute recently issued a report with compelling new evidence that family caregivers who provide complex chronic care to people who have cognitive and behavioral health conditions face particularly demanding challenges, including high levels of self-reported depression. As a result, a majority of them (61 percent) reported feeling stress “sometimes to always,” between their caregiving responsibilities and trying to meet other work or family obligations.
Adding to the challenge, people with cognitive and behavioral conditions (collectively termed “challenging behaviors” in the report) were generally sicker than other people requiring caregiving. These persons needing care often had chronic physical health diagnoses—including cardiac disease, stroke/hypertension, musculoskeletal problems (such as arthritis or osteoporosis), and diabetes—at higher rates than those without cognitive and behavioral conditions. Further illustrating the complexity, family caregivers of people with challenging behaviors often met with resistance from the person they were trying to help.
Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions, a publication in the “Insight on the Issues” series, summarizes the new findings. They are drawn from analysis of data based on a national survey of 1,677 family caregivers, 22 percent of whom were caring for someone with one or more challenging behaviors.
The report concludes, “All caregivers need training and support; caregivers who are responsible for people with challenging behaviors are among those most in need of assistance.”
“Take a hard look at this profile of today’s overstretched and overstressed caregiver for someone with cognitive or behavioral issues,” said Susan Reinhard, AARP’s Senior Vice President for Public Policy. Pointing to the expected surge in the incidence of Alzheimer’s disease and the projected drop by more than half in the ratio of potential caregivers to those likely to need care, she said, “This is the face of caregiving’s future unless we improve long-term services and support for family caregivers.”
“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 United Hospital Fund. “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. And currently, our health care system often doesn’t provide the kind of support that can make a difference.”
The report outlined six recommendations:
- Focused caregiver assessments
- Better integration of behavioral and physical health programs
- Respite and adult day care programs for family caregivers
- Training of family caregivers to better understand and respond to challenging behaviors
- Better training of health care providers to work more effectively with family caregivers
- Revisions to most support and training materials for family caregivers to reflect care management of the whole person, rather than just the specific condition.
Source: AARP. The report was produced with support from the John A. Hartford Foundation. Read the entire Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions report on the AARP website, where you will also find earlier reports from the groundbreaking Public Policy Institute/United Hospital Fund.