It All Falls on Me

Read the related press release

This United Hospital Fund and AARP Public Policy Institute report describes a series of six discussion groups in which family caregivers reported feeling unprepared by health care providers for the complex medical/ nursing tasks they were expected to perform at home. The participants also offered valuable guidance on how video instruction could be improved to help them perform their caregiving tasks with less anxiety and stress.

The discussion groups were held in New York City in March-December 2015, and participants included young as well as older caregivers, and both men and women. One of the six groups was conducted in Spanish, and a second in Chinese. Common themes in all the groups included lack of information from hospitals and community health care providers, failure to address emotional issues related to doing challenging tasks, and poor care coordination.

A series of caregiver instruction videos, produced by AARP PPI is available on UHF's Next Step in Care website.  Family Caregiver's Video Guide to Managing Medications includes “Guide to Giving Injections”; “Beyond Pills: Eye Drops, Patches, and Suppositories”; and “Overcoming Challenges: Medication and Dementia.”

This deep dive into caregiver perspectives is an outgrowth of a joint 2012 UHF/AARP Public Policy Institute report, Home Alone: Family Caregivers Providing Complex Chronic Care, available for download on the right.