The creation of the National Family Caregiver Support Program (NFCSP) nearly two decades ago marked the first federal recognition of the central role families play in the provision of long-term services and supports (LTSS). In the field of aging and caregiving, the NFCSP, created in 2000 under the Older Americans Act (originally enacted in 1965), was a game changer. Why? Because the federal program made it possible for every state to address family-related matters that historically were thought to be too private for a public response.
As a family caregiver for my mother who died last year at the age of 96, I benefited greatly from the peace of mind and financial security of having paid family leave benefits from my employer, AARP. The benefit was there when I needed it most: to be present for significant caregiving issues, during a hospitalization, and, finally, in the last days of my mother’s life.
In workplaces and at kitchen tables across the country, Americans are grappling with a growing issue that touches so many of us: the enormous struggles we face when caring for relatives and friends who need ongoing help because of a chronic illness, disability, or a serious health condition.
Many of you, like me, know that family caregiving for someone you love can be a source of deep satisfaction and meaning. But caring for a person with dementia, known as dementia caregivers, can exact an especially high emotional, physical and financial toll on family members themselves.
Families and close friends are the most important source of support to older people and adults with a chronic, disabling or serious health condition. They already take personal responsibility for providing increasingly complex care to the tune of $470 billion (as of 2013). That figure, representing family caregivers’ unpaid contribution in dollars, roughly equals the combined sales of the four largest U.S. tech companies (Apple, IBM, Hewlett Packard and Microsoft, $469 billion) in 2013.
My almost 96-year-old mother is one of about half of older adults with disabilities serious enough to need long-term services and supports. She is nearly blind, has dementia and osteoporosis, and suffers from arthritis. Recently she’s begun to experience back pain too. She lived in her home of over 50 years until it was damaged during Hurricane Sandy. For the past four years she has been living in an assisted living facility in New Jersey, in the community she prefers. Here’s a little of what the experience of my mother — and my family — reveals about the cost of care for older adults with health and self-care needs.
While family caregiving is an intensely personal issue, it is critically important to the well-being of our aging U.S. population, families and society — and must be taken seriously as a critical issue of public policy.
A recent study on the pioneering National Family Caregiver Support Program finds that over the past 15 years, the program has accelerated the development of local services and supports to help caregiving families. This is good news; before the NFCSP became law, only half the states reported providing respite care — one of the most pressing needs of families and friends who take on the caregiving role. That has begun to change, although greater progress needs to be made.
For employers big and small, the need to support workers who also provide unpaid care for a family member is a growing reality. Most family caregivers today — or an estimated 23.9 million workers — work at a paying job on top of their caregiving responsibilities.