The Politics of Family Caregiving

Posted on: 2016 10 14

'Tis the season of heavy politicking. Why not include the politics of family caregiving? I have read a bunch of articles recently about the subject. Unfortunately, like with most of the current political acrimony in our country, these articles have also left me feeling depressed. To be clear, it’s not the content of these articles, it’s the practically non-existent outcomes.     No matter where you see yourself on the political spectrum, I bet we can all agree that not much is getting done in our country. According to Gallup, the last time even 25 of Americans approved of the way Congress was handling its job was back on December 13, 2009. I believe Congress has lost sight of our humanity.   The heart of the matter is this: our party affiliation does not preclude our humanity. Cancer, Alzheimer’s, Parkinson’s, or Lou Gehrig’s Disease do not care if you are a Democrat, Republican, Independent, or Libertarian. Nor does diabetes, COPD, old age, a stroke or a heart attack. We are all human and we get sick. Chances are, we may need to provide care or we may need care-probably both- during our lifetime. This is our humanity.   Lets begin here: An estimated 43.5 million adults in the United States have provided unpaid care to an adult or a child in the prior 12 months. This unpaid care is valued at about $470 billion.  

New Report Cites Need for a National Family Caregiving Strategy: More action is needed to prepare health care and social service systems

by AARP, September 14, 2016

The demand for family caregivers of older adults is increasing significantly, and people who perform this essential service need more support, says a report released Tuesday by the National Academies of Sciences, Engineering and Medicine.   The report calls for a transformation of public policies and practices affecting people who are caring for older relatives or friends. It recommends that the next presidential administration “take immediate steps to address the health, economic and social issues” facing family caregivers. And it calls for the prompt development of a national caregiving strategy.   “Supporting family caregivers should be an integral part of the nation’s collective responsibility in caring for its older adult population,” said Richard Schulz, director of the University Center for Social and Urban Research at the University of Pittsburgh and chair of the 19-member expert committee that issued the report.   The recommendation for a national strategy is consistent with AARP’s push for pending legislation in Congress: The bipartisan Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (S. 1719/H.R. 3099) requires the development of a national strategy to support family caregivers. This bill unanimously passed the Senate last December and awaits action in the House of Representatives. Over 50 national organizations have urged the House to pass the RAISE Act in September.   According to the report, entitled Families Caring for an Aging America, at least 17.7 million individuals in the U.S. are caring for someone age 65 or older. The number of people needing care is expected to grow in the years ahead, even as the number of potential family caregivers is shrinking. Lower fertility, higher rates of childlessness and widespread divorce point to a diminishing pool of potential caregivers, the report says. Older adults will have fewer family members to rely on, and they are more likely to be unmarried, living alone and more distant from their children.   The committee points out that so far little action has been taken to prepare the health care and social service systems for this demographic shift.   Family caregivers are often marginalized or ignored despite their important role, the committee said. They may be excluded from treatment decisions and care planning. Financial incentives encourage shorter hospital stays with the implicit expectation that family members can manage the transition from hospital to home. Providers also expect family caregivers with little or no training to handle technical procedures and equipment, such as feeding and drainage tubes, the report says.   Efforts in this arena are already underway: Over the past several years, 33 states have enacted the CARE (Caregiver Advise, Record, Enable) Act, which requires hospitals to communicate with family caregivers and to instruct them on how to safely provide home care after discharge.   Advocates say more needs to be done. “Ignoring family caregivers leaves them unprepared for the tasks they are expected to perform, carrying significant economic and personal burdens,” said Schulz. “Caregivers are potentially at increased risk for adverse effects in virtually every aspect of their lives — from their health and quality of life to their relationships and economic security. If the needs of caregivers are not addressed, we as a society are compromising the well-being of elders.”     As the article mentions, the RAISE Act unanimously passed the Senate (CR S 8499-8500). It was introduced in the House in July of 2015 and four months later it was referred to the House Education and the Workforce Committee and the House Education and the Workforce Subcommittee on Early Childhood, Elementary and Secondary Education. According to Nancy LeaMond, chief advocacy and engagement officer of AARP, we can still make a difference - contact your U.S. representative and ask them to cosponsor the RAISE Act today to support America’s greatest support system: family caregivers. Call 844-259-9351 today.