Caregivers

<i>Taking Care</i>, a report to the President by the Council on Bioethics, addresses the ethical challenges of caregiving in our rapidly aging society, with special attention to the care of people with dementia. The report aims to enrich public discussions about aging, dementia, and caregiving, to encourage policymakers to take up these complicated yet urgent issues, and to offer ethical guidance for caregivers—professional and familial.

Although consumer direction is a growing trend in publicly supported HCBS programs across the states, we know relatively little about how this approach is implemented in the states. This national study aims to describe the role of consumer direction in publicly funded family caregiver support services and HCBS programs with a family caregiving component. This report addresses three questions with the intent of informing policy discussions.

Informal caregivers play an increasingly important role in the health care system; in 2003, nearly one of 10 working-age adults was caring for a sick or disabled family member. Yet a new Commonwealth Fund study says more than half of the 16 million caregivers, or 9 million adults have health problems of their own. As a result, many are financially vulnerable and struggle to obtain needed care. The report suggests possible policy reforms to ease their burdens.

This monograph summarizes the history of caregiver assessment; considers the reasons for assessing family care; discusses what, whom, when & where to assess; illustrates areas to assess; highlights examples of existing tools; explores commonalities as well as differences in caregiver assessment instruments; points out areas of caregiver assessment that have been neglected; identifies best practice criteria to consider in designing & implementing assessments; & discusses training issues.

In 2001, the State of New Jersey was awarded an Administration on Aging grant as part of the National Family Caregiver Support Program (NFCSP). New Jersey’s project involved integrating a focus on caregiving into the existing long-term care system. The project included activities aimed to better identify caregivers and their unique needs and increase awareness among senior service staff of diverse caregiving situations.

This technical assistance document is the first in a series of papers that examines issues pertaining to respite services as part of the Medicaid program. By reviewing the prevalent definitions of respite in the published literature and federal documents, we seek a consistent view of respite services that can be used in the development of administrative policies to support respite for Medicaid HCBS beneficiaries and their informal caregivers.

This report focuses attention on a growing issue facing the nation: how to support & sustain those who are the cornerstone of our LTC system—the dedicated families & informal caregivers. This national study is the first to examine publicly funded caregiver support programs throughout all 50 states. The report identifies key findings, describes state approaches to providing caregiver support services, offers state-by-state profiles, pinpoints challenges, & expands recognition of caregiver needs.