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Family Caregiving and Public Policy Principles for Change*

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PRINCIPLE 1

Family caregiving concerns must be a central component of health care, long-term care, and social service policymaking.

Family caregivers provide approximately 80% of all long-term services and supports for family members and friends across the lifespan.3, 4

Services provided each year by family caregivers are conservatively worth $257 billion, more than double the annual spending on home care and nursing home care combined, and comparable to 20% of all health care spending.5

Family caregivers put their own health and well being at risk in the service of their loved ones as they simultaneously save the health care system significant amounts of money.6, 7

Despite the wealth of services they provide, and in spite of their staggering numbers, family caregivers continue to be the most neglected group of the health and long-term care system. In return for family caregivers‘ contributions to the public good, society, through its public and private sectors, must support caregivers through well-designed policies, programs, and practices.

PRINCIPLE 2

Family caregivers must be protected against the financial, physical, and emotional consequences of caregiving that can put their own health and well-being in jeopardy.

Among their many roles, family caregivers are integral but unpaid partners in the health care system. As such, they provide care at significant costs to themselves
Out-of-pocket medical expenses for a family that has a loved one with a disabling or chronic condition who needs help with activities of daily living (eating, toileting, etc.) are more than 2.5 times greater than for a family without a family member with a disabling or chronic condition (11.2% of income compared to 4.1%).8

The majority of caregivers are employed and many are forced to make changes at work to accommodate caregiving. Over the course of a caregiving —career,“ family caregivers providing intense personal care can lose as much as $659,000 in wages, pensions and Social Security.9

Family caregivers who provide care 36 or more hours weekly are more likely than non-caregivers to experience symptoms of depression or anxiety. For spouses the rate is six times higher; for those caring for a parent the rate is twice as high.10

Caregivers use prescription drugs for depression, anxiety and insomnia two to three times as often as the rest of the population.11

The stress of intense family caregiving for persons with dementia has been shown to impact a person‘s immune system both in terms of increased chances of developing a chronic illness and in significantly slowing wound healing.12, 13

PRINCIPLE 3

Family caregivers must have access to affordable, readily available, high quality respite care as a key component of the supportive services network.

Respite, often the most frequently requested family support service,14 provides caregivers with occasional relief necessary to sustain their own health or attend to other family members. In emergency situations, a temporary haven to ensure the safety of the person for whom they provide care and provide them with a quality experience as well becomes an absolute necessity.

Without respite, not only can families suffer economically and emotionally, caregivers

themselves may face serious health and social risks as a result of stress associated with continuous caregiving.15

Respite has been shown to help sustain family stability, avoid out-of-home placements, and reduce the likelihood of abuse and neglect.16 New preliminary data from an outcome based evaluation pilot study show that respite may also reduce the likelihood of divorce and help sustain marriages.17

Respite, however, remains in short supply for all age groups, or is inaccessible to the family because of eligibility requirements, geographic barriers, cost, or the lack of culturally sensitive programs. Thus, lifespan systems need to be in place to identify and coordinate federal, state and community-based respite resources and funding streams across ages, disabilities, and family circumstances; to provide easy access to an array of affordable, quality respite services; to ensure flexibility to meet diverse needs; to fill gaps and address barriers in existing services; and to assist family caregivers with locating, training, and paying for respite.

PRINCIPLE 4

Family caregivers must be supported by family-friendly policies in the workplace in order to meet their caregiving responsibilities. Examples of family-friendly workplace policies include: flextime; work-at-home options; job-sharing; counseling; dependent care accounts; information and referral to community services; employer-paid services of a care manager and more.

Currently, only large Fortune 500 companies tend to have programs to support family caregivers–and then only for those caregiving for elderly relatives. Few small and mid-sized businesses–where most Americans work–have programs supporting family caregivers and are increasingly cutting paid health benefits as well. As a result, most family caregivers struggle to balance work and family responsibilities.

Forty-two percent of parents of children with special needs lack basic workplace supports, such as paid sick leave and vacation time.18

Family caregivers are doubly penalized when they temporarily leave the workforce for caregiving. Not only may they lose actual pay, but they also lose social security credits and this can impact their own ability to care for themselves in the future.
 


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