Sarah, age 51, is divorced and has a daughter in college. She also works full-time as an administrative assistant. About a year ago, she moved her 82-year-old widowed mother into her home. Sarah is the oldest of three sisters, but she is her mother’s primary caregiver, as her sisters live across the country. Her mother has Alzheimer’s that has begun to progress, as well as rheumatoid arthritis. She is easily agitated and has sometimes wandered off on her own.
Sarah is exhausted. Between working full-time, helping her mother bathe and dress, making sure her mother takes her medications and gets to all of her doctor appointments, and doing all other activities of running her own house, Sarah feels very stressed. She loves her work, but can’t afford to quit and lose her income or her health insurance. If she hires in-home help, she won’t be able to help pay for her daughter’s education. The stress is wearing on her and she is becoming depressed and anxious. She feels alone and doesn’t know what to do.
Caregiving is one of the most profound acts of service one person can provide for another. In 2015, there were approximately 43.5 million informal caregivers in the United States who provided over 37 billion hours of care—an enormous undertaking with an economic value worth around $470 billion.
A caregiver is someone who attends to the medical and/or daily needs of another, such as medication management, bathing, dressing, toileting, shopping, paying bills, or transportation. An informal caregiver is someone who provides this care on a volunteer basis. Informal caregivers are people who freely give of their time and resources to take care of family members, loved ones, and friends who are unable to take care of themselves. Informal caregiving is an essential service that often goes unnoticed and unrecognized—until now.
On January 22, 2018, the President signed into law the bipartisan “Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 2017,” also known as the “RAISE Family Caregivers Act.” According to RAISE, the Secretary of Health and Human Services, along with an Advisory Council, has 18 months in which to develop a Family Caregiving Strategy that all levels of government, communities, and health care providers can implement to provide support for caregivers, including:
1. Encouraging health care and long-term care services and support settings to center their services around the patient or person needing care and his or her family caregiver (if appropriate).
2. Involving family caregivers and persons needing care in the planning stages of care, including the assessment of care recipients and coordination of care provided to them.
3. Informing, educating, and training family caregivers in all aspects of care coordination, including advance planning services such as palliative and hospice care.
4. Offering respite options for family caregivers.
5. Offering guidance to family caregivers regarding financial security and workplace issues that might arise from being a caregiver.
6. Delivering services based on the performance, mission, and purpose of a program while eliminating redundancies.¹
While caregiving can be a rewarding service for both the caregiver and the recipient of care, it can also be very stressful for the caregiver, as most caregivers have jobs and their own families in addition to providing care for their family member, loved one, or friend. Over half of employed caregivers work full-time, and 70% of employed caregivers report having work-related problems, such as scheduling issues, due to being caregivers.
These challenges translate into a serious economic problem. While caregiving saves the taxpayers money by offsetting the payouts from Medicare and Medicaid that would occur if care recipients were in state-funded facilities, the lost productivity of employed caregivers costs the economy $33.6 billion per year. This does not take into account the increased costs of health care for caregivers due to the physical, mental, and emotional toll incurred from caregiving.
The RAISE Act will help caregivers bear the burden of this toll. Although a recent survey from AARP² finds that 91% of caregivers report positive emotions regarding their caregiving experience, such as joy, satisfaction, pride, and contentment, it also finds that about half of caregivers also report feeling stressed and worried, and 40% say they feel overwhelmed.
The first rule of caregiving is that the caregiver must take care of themselves, or they will be unable to take care of their loved one. One of the goals of RAISE is to help family caregivers take care of their personal health and needs, including finding opportunities for respite and self-care, so that they do not burn out from the stressors of caregiving. These opportunities could include support groups, in-home help to provide a break from caregiving, counseling, time to engage in a personal hobby or exercise, a safe place to vent any concerns or frustrations, or senior center and other programs that get care recipients out of the house and give caregivers a break.
Caregiving is an essential aspect of our society, and it is important that we support our caregivers as they travel these difficult paths. The implementation of RAISE is moving forward. In September, Congress funded the first step by authorizing $300,000 to establish the Advisory Council that will work with the Secretary to formulate the Family Caregiving Strategy that will best support caregivers. In October, the Secretary issued a public call for nominations for the Advisory Council, which will be comprised of several types of individuals, officials, and workers, including family caregivers and care recipients. Nominations are due by December 3, 2018. The Advisory Council will meet periodically each year and report on the development, maintenance, and updating of the Strategy.
November is National Family Caregivers Month, during which we recognize the millions of family caregivers in our country. Sadly, in our bustling, shiny world, caregivers often fade into the background, their humble sacrifices unknown and their diverse needs unmet. They have to face daunting challenges that can feel overwhelming and they need their communities, the law, and health care professionals to support them as they provide care for the most vulnerable members of society. The RAISE Act will help all of us give our caregivers the support they need. After all, one day, we may find that we ourselves need the support of a caregiver.