Lost in today’s healthcare headlines about social determinants of health, such as housing, transportation and food insecurity, is greater attention to the original social context of most of our health habits—family. Insurers and health systems are turning toward engaging patients’ family caregivers as another means of decreasing healthcare costs.
It has been a slow turn, to be sure. Despite decades of family systems thinking and clinical approaches, healthcare remains predominantly patient-centric in its policies, practices and research. But the need to reduce hospital readmissions and institutionalization rates are beginning to prod large systems to create more robust family caregiver support programs, especially in geriatric, home medicine, dementia, hospice and palliative care. The logic behind these moves would seem indisputable, given America’s aging population and higher incidence of chronic and serious illnesses and functional deficits. By bolstering the know-how and resilience of family caregivers, insurers and health systems are hoping older adults’ illnesses and disabilities will be better managed at home and therefore require less intensive and expensive services.
Many of these efforts seem to incorporate principles derived from evidence-based dementia caregiver support programs, such as REACH-II and the New York University Caregiver Intervention, during the past 30 years:
A patient- and family-centered care philosophy: There is recognition that spouses and other family members play key roles in communicating with healthcare professionals, picking up medications, buying and cooking healthy foods, and overseeing treatment plans as they are implemented in the real lives of patients in their home settings.
Formal and structured family caregiver support programs: Much of what passes for family intervention in healthcare is still informal and reactive: Physicians or nurses express concern about a troubled or difficult family member and then social workers scramble to make brief interventions. In contrast, the new family caregiver support programs strive to explicitly engage the patients’ family members early on as a normal part of comprehensive care. They use family caregiver navigators—distinct from patient care coordinators—who focus solely on caregiver needs for guidance, support, education and, in some instances, emotional counseling.
Formal and timely caregiver assessment: Like with traditional healthcare, these new programs ask about who’s in the family and solicit questions about the patients’ medical conditions and treatments. But they go beyond that, evaluating family members’ knowledge, abilities and willingness to participate in care, in addition to their degree of emotional distress with instruments such as the Zarit Caregiver Burden Scale, the Benjamin Rose Institute Caregiver Strain Instrument, and the American Medical Association Caregiver Self-Assessment Questionnaire.
Linkage to community-based organizations: To address all social determinants of health, healthcare and social services agencies need to more closely coordinate their helping efforts. For a more family-engaged healthcare, that means hospitals and outpatient clinics make earlier referrals with close follow-up to local Area Agencies on Aging and local chapters of disease-specific organizations such as the Alzheimer’s Association.
So who are the national players in this emerging trend?
» Twenty-six states now have contracted with managed care companies (e.g., United Healthcare and AmeriHealth Caritas) to manage the healthcare services for their Medicaid recipients. That includes so-called “dual eligibles” (older and disabled patients with Medicare and Medicaid) who are receiving Medicaid Long-Term Services and Supports (home- and community-based services and nursing facilities). To hold down costs, some of these managed care insurers have been experimenting with various means of better supporting family caregivers in order to forestall or prevent patients’ hospitalizations and placements in institutions. A November 2017 AARP Public Policy Institute report (see link below) describes some of these innovations, including increased caregiver engagement, assessment, respite and instruction.
» Dementia–unrelenting and without current medical cure—is the costliest of all American diseases despite the fact that over 70% of dementia patients are primarily cared for by unpaid family members. If these family members falter because of the rigors of dementia caregiving, then patients quickly wind up in emergency rooms, hospitals and skilled nursing facilities. It’s no surprise then that dementia caregivers are the target for many enhanced family engagement endeavors. Baylor Scott & White in Texas ran a pilot study that created individual care plans with caregiver supports, including a $750 month stipend for home care services. The results were improved overall functioning and decreased ER and hospital use for both the dementia patients and their family caregivers. Similarly, Alzheimer’s Greater Los Angeles helped create the Dementia Cal MediConnect program for dual eligibles which aims for better detection of patients with dementia, better working relationships between health systems and family caregivers, and better partnerships with dementia-specific community-based organizations.
» Geriatric/palliative medicine and family caregiving go hand in hand. WellMed, a large network of ambulatory facilities in Texas and Florida for Medicare subscribers, has caregiver specialists that reach out to family members at the time patients are admitted to its palliative care program. It offers them home visits, a telephonic support and education group, and an 8-session stress management program that has been found to lower caregiver burden and depression.
» At Dignity Health Central Coast in California, the family caregiver navigator makes an initial home visit to bring a caregiver gift basket and conduct a caregiver assessment before offering a range of services, including care coordination, a stress management program, and referrals to community agencies. She collaborates with promotores or community health workers to provide the caregivers with increased logistical and emotional support. The results: Decreased caregiver depression and reduced patient ER and hospital utilization.
These fledgling programs are noteworthy but rare. Other health systems have yet to follow suit. While Medicare ACOs have proliferated in recent years, few have implemented enhanced family engagement. And even with the existing programs mentioned above, few are employing providers with family systems training, such as medical family therapists.
But as long as America continues aging and value-based care spreads, family caregivers will inevitably play a larger role. It will be no longer adequate for clinicians to marginalize families or take their efforts for granted. The standard of care will require more of everything–education, support, guidance and, most of all, a spirit of partnership.
Barry J. Jacobs, Psy.D. is the author of The Emotional Survival Guide for Caregivers (Guilford, 2006), co-author of AARP Meditations for Caregivers (Da Capo, 2016), and the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA. In August, he will leave family medicine after nearly 24 years to become a healthcare consultant for Health Management Associates.
» AARP Public Policy Institute, “Emerging Innovations In Managed Long-Term Services and Supports for Family Caregivers”
» Cherry, D et al (2017). Dementia Cal MediConnect: Creating Partnerships Between Health Plans and Alzheimer’s Organizations in Improve Care in the Dual Eligibles Pilot. Public Policy and Aging Report, 27(S1): S12-17
» Stevens, AB & Thorud, JL (2016). The Symbiosis of Population Health and Family Caregiving Drives Effective Programs that Support Patients and Families, Generations, 39(4): 34-38