American society on aging

During the past five years, I have had the opportunity to meet and hear from many people who felt invisible. These individuals are among the 40 million family caregivers in the United States who are providing unpaid care to a parent, spouse, partner, friend or neighbor.

As baby boomers approach old age, many factors may be driving a growing divide between the demand for family caregivers and the number of available caregivers. This article highlights trends in family caregiving and changing patterns of family life that challenge the family's capacity to carry out its traditional functions in long-term services and supports (LTSS), describes the high cost of LTSS (including out-of-pocket spending), illuminates the future care gap, and explains the implications of these trends in the context of providing and paying for LTSS.

Projection models enable users to assess the costs and benefits of changes to long-term services and supports policies and to compare policy options, using a consistent set of underlying assumptions. Outlined are key challenges model developers face, including data limitations, difficulties anticipating potential behavioral responses, the need to assign appropriate benchmarks, the value of family care and intangibles like autonomy and quality of life, and grappling with uncertainty.

Older caregivers may be unfamiliar with guardianship, and may not know if it could help or hinder their caregiving. This article explores questions that professionals who are counseling older caregivers should ask, including whether guardianship is needed or if there is a less restrictive option; whether the caregiver should petition and what to expect of the court proceeding; whether the caregiver should take on the legal responsibility of serving as guardian; and what happens in case of family conflict, abuse by a guardian, or inability of a guardian to continue serving.

Family conflict and estrangement can complicate caregiving tasks later in life. Research suggests that adult children who are estranged do not visit their parents when their parents are sick, despite societal pressures to reconcile and take care of them. Parents also report feeling surprised that their estranged children did not return home when they were in need, which ultimately solidified the estrangement. This article offers a broad discussion of the existing research on family conflict and caregiving, then focuses more specifically on family estrangement. 

Federal policies present roadblocks to caregivers, especially to their financial security. Federal Medicaid law limits payments for spousal caregiving and the Family and Medical Leave Act only provides for unpaid leave. The Social Security Administration gives no work credits for persons providing free caregiving. Federal Medicaid law requires all caregiving be provided voluntarily, but many state Medicaid programs are not in compliance.

During later life, older adults may be caregiving for people with late-onset mental health issues. The situation can alter family relationships and cause role transitions. This article offers three late-life mental health scenarios that require spouses or partners, adult children, and-or others to deal with an older adult family member's mood and behavior changes. Through case examples, the author explores geriatric depression, complicated grief, and provision of extended care for persons with severe mental illness, and highlights support for older care providers.

The need for long-term care (LTC) services has been growing, and is escalating with the aging of the baby boomers. Women are the main providers and recipients of care in the formal (paid) and informal (family) LTC system, meaning they bear the brunt of the gap between the need for care and available resources. Without strong public resistance, this gap is likely to be filled by relying upon family care, mainly provided by women. This re-familization of care could turn our crisis of care into a catastrophe for low- and middle-income families.

In 1967, the concept of family caregiving was not talked about. It was a responsibility assumed by a spouse, parent, or child, the overwhelming majority of whom were female. There was no body of knowledge, nor was it covered in the media. This article summarizes the evolution of caregiving in the United States over the past fifty years, including: increased awareness of caregiving; federal development of support services for caregivers; legislation; impacts on caregiver health; workplace support for caregivers; technological support; and research. 

In recent years, end-of-life care has been receiving attention in the lay and professional press. Integral to the concerns for patient-centered supportive care is the need to focus on the family caregiver, as they are directly involved in the patient's care. This article describes relevant challenges for the family caregiver, including information about types of care, scheduling and logistics, patient physical care, including symptom management, caregiver emotional and physical health, advance directives, coordination of care, and communication.