New United Hospital Fund & AARP Policy Institute Report: Stresses on Family Caregivers of Those with Dementia, Other Cognitive/Behavioral Conditions

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A new report from the United Hospital Fund and AARP Public Policy Institute focuses on family caregivers who provide complex chronic care to people who also have cognitive and behavioral health conditions, pointing to their demanding challenges and to high levels of self-reported depression. 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 challenges, people with cognitive and behavioral conditions were generally sicker than other people requiring caregiving, and family caregivers often met with resistance from the person they were trying to help.

In addition to summarizing survey findings, the report outlines six recommendations: focused caregiver assessments, better integration of behavioral and physical health programs, efforts to set up 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, and revisions to most support and training materials for family caregivers to reflect care management of the whole person, rather than just the specific condition.

The report Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions documents new findings drawn from additional analysis of data based on a December 2011 national survey of 1,677 family caregivers, 22 percent of whom were caring for someone with one or more cognitive or behavioral health conditions in addition to complex chronic health concerns. Earlier findings were published in the groundbreaking report Home Alone: Family Caregivers Providing Complex Chronic Care and in two earlier publications in this series focused on caregiver subpopulations, Employed Family Caregivers Providing Complex Chronic Care and Family Caregivers Providing Complex Chronic Care to Their Spouses.

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