Two out of five adults are providing care for a sick or disabled loved one. Many care recipients as well as their caregivers are 65 or older. An increasing number of elders suffer from some form of cognitive impairment. Thus, caregiving is serious work; family caregivers not only coordinate a wide range of care, they perform medical and nursing tasks for their loved ones, including managing multiple medications and operating medical equipment. Those elders too ill to be cared for at home may receive fragmented care from facilities including skilled nursing, rehabilitation, and long-term care. Two-thirds of individuals who reach 65 will need long-term care in their lives.
Thus, the availability, coordination, and quality of care for elders are concerns for a large portion of adults. Our aim is to engage a community of patients and caregivers who have experience with the stresses of managing care needs of the elderly. We will create an advisory committee of content experts and hold a series of community meetings with patients and caregivers in order to identify ways in which these individuals can be better supported, especially by improving communication and coordination of care. We intend to identify improvements that are needed within the long-term care continuum (LTCC) that can impact elders' health and improve quality of care. With this background we will generate ideas for re-imagining the LTCC that can be evaluated with a PCORI research project.