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Family Caregiving and Public Policy Principles for Change*

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Family caregivers must have appropriate, timely, and ongoing education and training in order to successfully meet their caregiving responsibilities and to be advocates for their loved ones across care settings.

Family caregiving is a complex responsibility, involving emotional support, household management, medical care, dealing with a variety of governmental and other agencies, and decision-making. Yet family caregivers consistently report that they were —not prepared“ for these roles. This lack of training occurs throughout the caregiving experience, but is most apparent when care recipients are discharged from hospitals or short-term nursing home stays after an illness or accident. One national survey found that 43 percent of caregivers performed at least one medical task, defined as bandaging and wound care, operating medical equipment, or managing a medication regimen.19 Yet formal instruction is sporadic and inadequate. Families are expected to perform —skilled“ nursing care, but without the training that professionals must receive.

Family caregivers‘ needs for information and training change throughout the course of their loved one‘s illness. They must have opportunities to learn new skills as they become necessary, access new resources, and learn about options for care as the situation changes. Families need honest information about the financial, social, and health-related consequences of various arrangements for care, and they must share in the decision-making about care arrangements.

Professionals must provide information in understandable, nonjudgmental and culturally competent ways that reflect sensitivity to the caregiver‘s emotional involvement with the care recipient. Policy makers should support programs that bring family caregivers and professionals together to further collaboration.20


Family caregivers and their loved ones must have affordable, readily available, high quality, comprehensive services that are coordinated across all care settings.

People who need the assistance of family caregivers typically have complex, chronic medical conditions and functional limitations. As a result, they require services from many parts of the medical and long-term care systems. Unfortunately, coordination of information and services within each system and between these systems rarely occurs.

Use of community services increases with level of disability as well as with age. Thirteen percent of people over 85 use community services (home-delivered meals, transportation, care management, etc) compared to only one percent of persons ages 50 - 64. Case management services play an important role in linking persons with available services as well as managing public expenditures for long-term services.21

Thirty-two percent of people with serious chronic conditions see four or more different physicians in a year. Medicare beneficiaries with five or more conditions see an average of 14 different physicians in a year.22

In 2000, 50 percent of caregivers reported that different providers gave different diagnoses for the same set of symptoms and 62 percent reported that different providers gave other conflicting information. Another recent survey found that 44 percent of physicians believe that poor care coordination leads to unnecessary hospitalization, and 24 percent stated poor care coordination can lead to otherwise unnecessary nursing home stays.23

 It is in this environment that caregivers must take on the complicated and difficult role of care coordinator œ ensuring that treatments prescribed by different providers do not conflict and ensuring that important medical and functional information travels across providers, settings, and over time. Care coordination (within the medical system and across medical and supportive service systems) is not common in health care today. 24 Lack of coordination, resulting in poor health outcomes, can drive inappropriate and potentially unnecessary spending.


Family caregivers and their loved ones must be assured of an affordable, well qualified, and sustainable health care workforce across all care settings.
Millions of family caregivers and their loved ones require medical and non-medical assistance from direct care workers, either at home or in institutional settings. Currently, there is a growing shortage of these paraprofessional and professional workers that is impacting the quality and continuity of care. The problem is projected to get worse as the Baby Boom generation ages.25

A shortage of well qualified, reliable, and affordable health care workers has a direct impact on the health and safety of persons with chronic conditions or disabilities. It also has a direct impact on the health and well being of family caregivers who must pick up the extra workload, much of which requires training and support they do not have, and which adds to their caregiving burden.26

Family caregivers must have access to regular comprehensive assessments of their caregiving situation to determine what assistance they may require.
Social service and health care providers cannot assume that family members can always provide care for a frail elder or person with disabilities.

Family caregivers should be considered an integral part of the long-term care system, asindividuals with rights to their own support and assessments of their own needs.

An assessment of the family caregiver‘s strengths, needs and preferences constitutes thefoundation for developing appropriate and quality long-term care.27, 28, 29

The availability of family members or others to provide uncompensated care should not be considered in allocating long-term care benefits (as in the Medicaid program).

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