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Family Caregiving and Public Policy Principles for Change*

Caregiving has always been a universal experience in our society affecting people of all races, ethnicities, lifestyles, and income levels, but in our time family caregiving has become more than an act of love and familial responsibility. It has become an essential element of our health and long-term care system. This is so for a number of reasons:

Historically caregiving was short-lived. Most people died from infectious diseases until the advent of antibiotics in the 20th century. The average lifespan in 1900 was just 47. Today it is in the mid 70s, and the majority of people die from the consequences of a chronic condition. This means caregiving situations typically last years or decades–or, in some cases, such as when children are born with congenital abnormalities or developmental disabilities, an entire lifetime.

Institutionalization of individuals with chronic or disabling conditions has given way to a growing movement toward mainstreaming and community living. This movement has now become the law of the land with the handing down of the Supreme Court‘s Olmstead decision.

In the midst of these changes, major demographic trends are also having an impact on family caregiving.

Family members no longer live in close proximity to the extent they did in the past. Long distance caregiving is a result of our enhanced mobility and changing social order.

Women have traditionally played the role of family caregiver, but in this era when women make up almost half the labor force, they are less available to take on the role of family caregiver.

Add to these changes the fact that America is currently facing an ever-growing health care worker shortage at the same time that health and long-term care costs continue to rise. As a result of cost containment policies and practices, people with health needs are being discharged from hospitals or other acute care settings with more complex care needs and curtailed homecare services, which means more responsibility for families, who are inadequately prepared and trained.

It is clear that given these circumstances American health care is now on a collision course with the day-to-day reality of families coping with chronic conditions. Without attention to this situation, the $257 billion in unpaid supportive services provided by the more than 25 million family caregivers1–an amount comparable to Medicare spending in 2002 and exceeding Medicaid spending in the same year2–may well be jeopardized as these same family caregivers suffer from physical, emotional, and financial problems that impede their ability to give care now and support their own care needs in the future. As this pattern plays itself out, the quality of care provided to individuals with disabling or chronic conditions or the frail elderly will diminish and the costs to the nation‘s health care system skyrocket.

Now more than ever, the United States needs to develop responsible social policy to address the needs of caregiving families who have unwittingly taken on the dual jobs of health care and social service provider. The following principles apply to caregivers in all situations, although how they would be implemented would vary by setting.

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