The RAISE Family Caregiving Advisory Council recently delivered a report to Congress for improving support of family caregivers. The council provides recommendations to the Department of Health and Human Services on effective models of family caregiving as well as support to family caregivers, and ways to improve coordination across federal government progress. It was established by the Recognize, Assist, Include, Support and Engage Family Caregivers Act of 2017, or the RAISE Act.
The 26 recommendations fall under five goals and include: increasing awareness of family caregivers and engaging family caregivers as partners.
Coincidentally, these recommendations were supported by a recent Health Affairs study that found that “acknowledging, incorporating and supporting the ‘invisible workforce’ of informal family caregivers can benefit residents, professional caregivers and staff members in assisted living communities.”
However, the track record for actually increasing awareness and engaging caregivers is not good. Consider a JAMA study that showed that while health care workers usually listen to family caregivers, they are rarely or never asked whether they need help. The study’s findings concluded a reinforced need for health systems to support family and unpaid caregivers.
The outcomes for not doing so are severe. Caregivers often suffer ill health and some, like my sister, pre-decease those for whom they are caring. With a patient, you are caring not just for the health care needs of the patient but of the caregiver as well.
Actions to Take
The National Alliance for Caregiving published a report, “From Insight to Advocacy: Addressing Family Caregiving as a National Public Health Issue” in 2018. The report discusses ways to engage caregivers as a “vital and recognized stakeholder group” — from state and local caregiver coalitions to national advocates and health care providers, as well as caregivers themselves.
The recommendations in the report are as relevant today as then. Here are ways to take action to help families and caregivers get the support they need while caring for a loved one.
For caregivers they recommend:
— Form or join a state or local caregiving coalition.
— Advocate on behalf of existing programs that support caregivers.
— Advocate for policies that are needed to expand services and supports, like individual counseling and respite care.
— Educate policymakers on the prevalence of caregiving.
— Educate health systems to understand how to better work with caregivers.
For health systems they recommend:
— Include caregivers as a vital member of the health care team.
— Ensure caregivers have access to comprehensive training and information, like providing print literature on the patient’s condition.
— Identify and implement up-to-date best practices.
— Guarantee and confirm that caregivers are included in intervention strategies.
— Ensure health systems are family- and patient-centered.
Likelihood of Change in Caregiving
Having been in the health care business for some 37 years and seeing how things move glacially, well, I am a bit jaded. What caregivers need is time and flexibility. As we struggle to pass national paid time-off legislation, some companies have stepped up to do so. But not many. Others have acknowledged the time issue but not the need to pay you for that time off.
Kathy Kenyon, a former senior policy analyst at the Department of Health and Human Services, speaking to the Institute of Medicine’s Committee on Family Caregiving for Older Adults had this to say:
“In my experience, one unfortunate unintended consequence of the current culture in health care is a type of medical error, which I call a ‘failure to heed or engage caregiver error.’ It’s a subset of the larger ‘failure to heed or engage the patient error.’ However, the standardized formats for identifying errors and harm in health care do not capture failure to engage or heed patients or caregivers. Is caregiver engagement a question on patient satisfaction surveys? Until we start looking for errors, harm and dissatisfaction caused by the failure to engage or heed caregivers, we lack evidence that might spur change.”
If it truly takes a village then the plight of family caregivers will only be solved at a grassroots level, where communities identify and offer help to them. It could be through service clubs and churches. Some of that is already happening.
Maybe Bernard Brown, emeritus professor of cardiology at Harvard, in his book “The Lost Art of Healing” said it best 26 years ago.
— Healing has been replaced with treating.
— Caring is supplanted by managing.
— The art of listening is taken over by technological procedures.
What we need to do, he said, is:
— Listen to know the patient behind the symptoms.
— Use words that affirm the patient’s vitality.
— Attend to the stresses and situations of his/her life situation.
These words apply equally to the family caregiver as they do to the patient.
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