Family caregivers are the largest group in the workforce—65 million Americans who provide unpaid care for a chronically ill, disabled or aged family member. The value of the services they give free to our society is estimated to be $375 billion a year. That is almost twice as much as the government spends on homecare and nursing home services combined ($158 billion).
I spent last week at the annual Aging in America conference, where 3700 professionals in the field of aging gather to exchange ideas and information. These are all passionate advocates for older Americans and their adult children — but nowhere did I hear new hope for easing the financial burden of working caregivers.
Three-quarters of caregivers do work for a living as well as look after family members who are chronically or seriously ill or lingering with dementia. How do they manage this most challenging and extended passage?
They give up their savings, sell their homes, often move into the same home with their frail loved ones to cut expenses, and face the constant danger of being fired for their divided concentration between family and work.
Will family caregivers get government help before they go broke?
We know that 47% of working caregivers say the increases in caregiving expenses has caused them to use up all or most of their savings, according to the 2009 Survey of the Economic Downturn and Its Impact on Family Caregiving by Evercare and The National Alliance for Caregiving (NAC). Women who are family caregivers are two-and-a-half times more likely than non-caregivers to live in poverty and five times more likely to receive Supplemental Security Income (SSI).
But it’s the physical toll taken by the stress of unpaid caregiving that may be the greater cost to families and society. The shadow heroes who provide long-term care for their family members by and large don’t see doctors for themselves, don’t have time to exercise and develop poor eating habits. Nearly a quarter of family caregivers who look after aging loved ones for five years or more report their health is fair or poor, according to AARP and NAC.
Forty to 70% of family caregivers have clinically significant symptoms of depression. Research has shown that the stress of caregiving can trigger an underlying predisposition to depress or other mental illness. Even celebrities with all kinds of resources can be taken down by the shock and sadness of caregiving.
Catherine Zeta-Jones fell into depression when her husband, actor Michael Douglas, went through brutal treatment for stage 4 throat cancer last fall. The actress couldn’t sleep or get out of bed even to meet a few friends at a restaurant. She was diagnosed in March with bipolar disorder and checked into a mental health facility.
The stress of caregiving for a family member with dementia is even more severe. It has been shown to impact a person’s immune system for up to three years after their caregiving ends, according to the National Academy of Sciences.
In the current cost-slashing environment, why should corporate America care if family caregivers have to foot the entire bill for keeping mom and dad going? One reason: caregivers for elderly loved ones cost employers 8% more in health care costs estimated to be worth $13.4 billion per year. And business takes a heavy hit from lost productivity by caregivers.
Kathy Greenlee, President Obama’s Assistant Secretary on Aging, addressed the Conference without ever mentioning the program which she is charged to implement: The CLASS Act. A year ago, when President Obama signed this bill into law, it was heralded as a long-term health insurance plan offered by the federal government to working Americans who could voluntarily enroll through their employers. The CLASS plan would provide participants with the cash to help pay for needed caregiving assistance if they become functionally limited.
In other words, they could pay their family caregivers a minimum of $50 a day. But the budget-cutters in prominence in Congress have put the law through a buzz saw. Secretary Greenlee is tasked, by law, to release details of the plan by Oct.1, 2012. She refuses to be interviewed about it. She has said that she won’t put forward a plan that is not financially sustainable.
I can’t help but wonder, don’t the budget-busters have aging parents, too?
Journalist and lecturer Gail Sheehy is the author of 16 books about adult life stages, including Passages in Caregiving: Turning Chaos into Confidence. This story appears in USA Today