Two out of five adults are providing care for a sick or disabled loved one. Many care recipients, and their caregivers, are 65 or older. 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 older adults 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 expand our advisory team to include primary care providers and academic researchers. We will hold a series of advisory committee meetings to gain the perspective of providers on ways in which caregivers can be better supported. We will hold community meetings with patients and caregivers to better understand their needs for support and ultimately combine the two groups for consensus building dialogue. Our aim is to identify practical and feasible means for primary care providers to collaborate with caregivers to optimize care for patients while enhancing the ability of both providers and caregivers to support their care. With this background we will generate ideas for re-imagining the elderly community member care team to include primary care providers, their staff plus patients/caregivers that can be evaluated with a PCORI research project.