Dear RAISE Family Caregiving Advisory Council
You are the Dream Team of family caregiving innovators, the all-stars of our fiercest advocates. Since President Trump signed the RAISE Family Caregivers Act in January 2018, mandating the creation of an Advisory Council to devise a national strategy for supporting family caregivers, we’ve been awaiting your anointment and launch. Now the 15 of you—high-flown academics and hands-on caregivers; aging, veterans and intellectual disability experts; entrepreneurs, philanthropists, and policy wonks—will gather in Washington, DC on August 28 for your first of many meetings over the next three years. Not to pile expectations too high but your Council will likely be the most influential committee on families and health ever, shaping federal and consequently state legislation and funding for years to come.
Over several decades, many of us have worked hard to establish the identity and needs of caregiving family members in the American public consciousness. We’ve published thousands of articles on the effects of family caregiving on caregivers, ideal components of caregiver education and support, and the impact of caregivers’ involvement on patients’ clinical outcomes. But the family caregiving field, I’m sure you’d agree, lacks coherence. Disease-specific organizations, such as Arc, NAMI and the Alzheimer’s Association, have their ideas about helping family members. Health insurance companies use their proprietary schemes for care coordination. Area Agencies on Aging and Veterans Affairs do their own things. There is little consensus about how to best raise up family caregivers and thereby bolster the loved ones they care for.
We are looking to your wise leadership to create order out of our chaos, to part the seas of our overabundance of findings and programs.
But may I humbly attempt to assist you? As a clinician, healthcare educator, consultant and former caregiver myself, long devoted to these issues, I offer here my two cents:
Come together right now: Family caregiving, like all healthcare and social service fields, has suffered from a certain degree of division and rivalry. When the aging network grabs more grants, the disability folks grumble. When the disability folks have a bigger voice in governmental hearings, then the aging network stews. Now is the time for all of us to find commonality of purpose and means. Family caregiving should be viewed as a lifespan issue for families touched by the widest range of illnesses and conditions. There are certain topics of great interest to all intra-caregiving constituencies: the interface between caregivers and our complex healthcare system; access to affordable medical and support services; family dynamics and developmental needs; more government and community aid to enable people to stay in their homes. Those are but some of the subjects I hope you prioritize.
Forget “family-centered” care: “Family-centered” care—the ideal of treating the family as the unit of care–plays well in pediatrics. But, in my experience, most clinicians serving adults are, at best, ambivalent about the term. Many regard it as anathema to their principal commitment to “patient-centered” care because–by putting family members on equal footing– they are sullying the sacrosanct relationship between provider and patient. My strong recommendation is to package family caregiver involvement and support with a different term: “patient-centered/family-engaged” care. It will make all the difference in winning over healthcare systems and professionals
Package family caregiver involvement and support with a different term: “patient-centered/family-engaged” care
Shorten: Many smart people over the years have devised psychometrically rigorous family caregiver assessment tools and models. Unfortunately, almost none of them are routinely employed today in healthcare settings. Speaking as someone who worked for 24 years in primary care, no assessment instrument—no matter how brilliant—will ever be used if it isn’t quick and dirty (and incentivized).
I remember over 25 years ago when the domestic violence movement drew on research about the health effects of family abuse to launch an aggressive education campaign targeted to healthcare trade associations to promote domestic violence surveillance as part of standard care. Its advocates came up with a single recommended evaluative question for patients to serve this important function. It is often phrased as “Are you being harmed or feel threatened in your home?” Questions like that are now part of the pencil-and-paper health surveys filled out by patients as part of the initial intake in nearly every primary care office in the land.
Family caregiving needs an evidence-based surveillance question or two (or possibly three) that could be used across all healthcare and social service settings. (For more in-depth discussion on this topic, please see https://www.integratedcarenews.com/2019/in-search-of-the-briefest-family-caregiver-eval/). Those brief questions could then trigger a more detailed assessment (the same way a positive PHQ-2 triggers use of the PHQ-9). You, cherished Council members, are well positioned to select these questions. By going short and practical, you have the power to create a viable inroad to heighten professional awareness of family caregivers and their needs.
Sow and tend: Many blue-ribbon reports have little more impact than padding graduate students’ theses. A little over three years from now, when the Secretary of Health and Human Services (whomever she is) stands before the cameras to grandly announce your recommendations for identifying and supporting family caregivers, that event must be the beginning, not the end, of this work. How do you build into your plan a dissemination-and-nurturance strategy so that the seeds you will sow will take root and receive enough tending to thrive? How do you ensure that the systems of care really do transform? How do you achieve the difference you’ve all worked toward–that we’ve all worked toward–throughout your careers and lives?
Godspeed. Good luck. And let me and all the other many family caregiver advocates who will be closely watching you know what we can do to further your crucial work.
Take care, Barry J. Jacobs, Psy.D.
For more information on the RAISE Family Caregiving Advisory Council, see this link: https://acl.gov/programs/support-caregivers/raise-family-caregivers-advisory-council