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Research Article| Volume 26, ISSUE 3, P358-363, March 2018

Family Caregiving: A Vision for the Future

  • Richard Schulz
    Correspondence
    Send correspondence and reprint requests to Dr. Richard Schulz, Department of Psychiatry and University Center for Social and Urban Research, University of Pittsburgh, 3343 Forbes Avenue, Pittsburgh, PA 15260.
    Affiliations
    Department of Psychiatry and University Center for Social and Urban Research, University of Pittsburgh, PA
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  • Sara J. Czaja
    Affiliations
    Department of Psychiatry & Behavioral Sciences, University of Miami Miller School of Medicine, Miami, FL
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      Highlights

      • This article provides a comprehensive research and health care policy agenda for family caregiving in the U.S.
      • A confluence of structural and process barriers impedes effective partnerships between family caregivers and providers of patient care.
      • Optimizing the role of family caregivers will minimally require systematic identification, assessment, and support of family caregivers throughout the care delivery process.
      • Research is needed to develop assessment tools, decision algorithms and procedures for integrating caregivers into existing clinical practices.
      • Payment reforms are needed to motivate health care providers to engage, assess, and support caregivers.
      The authors of this review both served on the National Academy of Science, Engineering, and Medicine Committee that produced the report, “Caring for an Aging America”. In this commentary we summarize key findings and recommendations most relevant to clinicians and researchers in geriatric psychiatry and related disciplines. The report notes the growing prevalence of family caregiving in the United States, especially those caring for high-need patients with multiple chronic conditions, disability, and/or cognitive impairment. To support the capacity of family caregivers to perform critical caregiving tasks, the report recommends a major shift in healthcare policy toward collaborative partnerships among patients, their defined family, and providers of care. Optimizing the role of family caregivers will minimally require systematic attention to the identification, assessment, and support of family caregivers throughout the care delivery process. Research is needed to develop the tools and protocols to efficiently assess caregivers, and identify ways in which they can be integrated into existing clinical practices. We also need research to identify how to best implement, maintain, and evaluate caregiver support programs within clinical and community settings. The Centers for Medicare and Medicaid Services should be charged with developing, testing, and implementing provider payment reforms that motivate providers to engage and support family caregivers. Payment reforms should include clearly articulated performance standards that hold providers accountable for caregiver engagement, training, and support by explicitly including caregiver outcomes in quality measures.

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      References

      1. Schulz R. Eden J. Families Caring for an Aging America. National Academies of Sciences, Engineering and Medicine, The National Academies Press, Washington, DC2016
        • Schulz R.
        • Tompkins C.A.
        Informal caregivers in the United States: prevalence, caregiver characteristics, and ability to provide care.
        in: National Research Council, The Role of Human Factors in Home Health Care: Workshop Summary. The National Academies Press, Washington, DC2010: 117-143
      2. National Health and Aging Trends Study: Produced and distributed by www.nhats.org with funding from the National Institute on Aging (grant number NIA U01AG32947).

      3. National Study of Caregiving: Produced and distributed by www.nhats.org with funding from the U.S. Department of Health and Human Services' Office of the Assistant Secretary for Planning and Evaluation in cooperation with the National Institute on Aging (grant number NIA U01AG32947).

        • Hayes S.L.
        • Salzberg C.A.
        • McCarthy D.
        • et al.
        High-Need, High-Cost Patients: Who Are They and How Do They Use Health Care—A Population-Based Comparison of Demographics, Health Care Use, and Expenditures.
        The Commonwealth Fund, New York, NY2016
        • Kelley A.S.
        • McGarry K.
        • Gorges R.
        • et al.
        The burden of health care costs for patients with dementia in the last 5 years of life.
        Ann Intern Med. 2015; 163: 729-736
        • Hurd M.D.
        • Martorell P.
        • Langa K.M.
        Monetary costs of dementia in the United States.
        N Engl J Med. 2013; 369: 489-490
        • Riley G.F.
        • Lubitz J.D.
        Long-term trends in Medicare payments in the last year of life.
        Health Serv Res. 2010; 45: 565-576
        • Hogan C.
        • Lunney J.
        • Gabel J.
        • et al.
        Medicare beneficiaries' costs of care in the last year of life.
        Health Aff. 2001; 20: 188-195
        • Schulz R.
        • Sherwood P.
        Physical and mental health effects of family caregiving.
        Am J Nurs. 2008; 108: 23-27
        • Schulz R.
        • O'Brien A.T.
        • Bookwala J.
        • et al.
        Psychiatric and physical morbidity effects of Alzheimer's disease caregiving: prevalence, correlates, and causes.
        Gerontologist. 1995; 35: 771-791
        • Wolff J.L.
        • Spillman B.C.
        • Freedman V.A.
        • et al.
        A national profile of family and unpaid caregivers who assist older adults with health care activities.
        JAMA Intern Med. 2016; 176: 372-379
        • National Quality Forum
        Priority Setting for Healthcare Performance Measurement: Addressing Performance Measure Gaps in Person-Center Care and Outcomes.
        (August 15; Available at:)
        • Czaja S.J.
        • Lee C.C.
        • Schulz R.
        Quality of life technologies in supporting family caregivers.
        in: Schulz R. Quality of Life Technology Handbook. CRC Press/Taylor and Francis Group, Boca Raton, FL2013: 245-260
        • Administration for Community Living
        National Family Caregiver Support Program (NFCSP).
        (Available at:)
        • Public Law 111-1563
        Caregivers and Veterans Omnibus Health Services Act of 2010.
        (May 5; Available at:)

      Linked Article

      • Benefit-Finding for Dementia Caregivers Through Cognitive Reappraisal
        The American Journal of Geriatric PsychiatryVol. 26Issue 3
        • Preview
          Many societies are facing the challenge of caring for the increasing number of people with dementia. As well as providing symptomatic treatment to patients, healthcare practitioners have to deal with the needs of family caregivers who are at elevated risk for depression and health problems. Programs to support caregivers to exercise their role in the long term and to reduce the likelihood of adverse health outcomes are urgently needed.1
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