Chapter 32. The Continuum of Caring in the Long TermMovement Toward the Community

George L. Maddox, Ph.D.; Elise J. Bolda, M.S.P.H., Ph.D.
DOI: 10.1176/appi.books.9781585623754.399474



Among health care policy analysts, care providers, and consumers in the United States, the conversation about the role of communities in chronic care over the long term has changed significantly over the past two decades. A primary stimulus for this change has been increased awareness of how badly the currently dominant medical model of hospital care is mismatched with the increasingly obvious needs for more effective care of chronic conditions in nonhospital settings. This mismatch has been illustrated dramatically by a report of the Institute of Medicine of the National Academy of Sciences, Crossing the Quality Chasm: A Health System for the 21st Century (Institute of Medicine 2001), which emphasizes the importance of multidisciplinary care in community settings and the necessary involvement of patients in that type of care. Involving the community in caregiving becomes increasingly necessary as well as desirable as populations age. In recent decades, federal policies guiding the provision of long-term care have devolved to give states and communities increasing responsibility for how that care is provided. How this devolution of long-term care policy, which began as a requirement, has become an opportunity for innovation is the issue of interest here.

Your session has timed out. Please sign back in to continue.
Sign In Your Session has timed out. Please sign back in to continue.
Sign In to Access Full Content
Sign in via Athens (What is this?)
Athens is a service for single sign-on which enables access to all of an institution's subscriptions on- or off-site.
Not a subscriber?

Subscribe Now/Learn More

PsychiatryOnline subscription options offer access to the DSM-5 library, books, journals, CME, and patient resources. This all-in-one virtual library provides psychiatrists and mental health professionals with key resources for diagnosis, treatment, research, and professional development.

Need more help? PsychiatryOnline Customer Service may be reached by emailing PsychiatryOnline@psych.org or by calling 800-368-5777 (in the U.S.) or 703-907-7322 (outside the U.S.).


Baltes P, Baltes M: Psychological perspectives on successful aging: the model of selective optimization with compensation, in Successful Aging. Edited by Baltes P, Baltes M. New York, Cambridge University Press, 1990, pp 1–34
Bandura A: Self-Efficacy: The Exercise of Control. New York, WH Freeman, 1997
Bell JP, Leak SC: The aging at home project: a successful partnership in caring. Duke LTC Policy Paper Series, No 8. July 1999. Available at www.ltc.duke.edu/occasional_8.htm. Accessed March 3, 2008.
Benjamin AE: Consumer-directed services at home. Health Aff (Millwood) 20:80–95, 2001
Bolda E, Lowe JI, Maddox GL, et al: Community Partnerships for Older Adults: a case study. Fam Soc 86:411–418, 2005
Bolda E, Saucier P, Maddox GL, et al: Governance and management structures for community partnerships: experiences from the Robert Wood Johnson Foundation's Community Partnerships for Older Adults Program. Gerontologist 46:398–403, 2006
Caro F, Morris R: Devolution and Aging Policy. New York, Haywood Press, 2002
Cuellar E, Tilly J, Wiener J: Consumer directed home and community service programs in five countries: policy issues for people and government. October 1, 2000. Available at http://www.urban.org/publications/410330.html. Accessed March 2, 2008.
Cutler DM: Declining disability among the elderly. Health Aff (Millwood) 20:1–27, 2001
DeFriese G: Self-care activities, in Encyclopedia of Aging, 3rd Edition. Edited by Maddox G. New York, Springer, 2001, pp 900–902
Field M, Cassel C: Approaching Death: Improving Care at the End of Life. Washington, DC, National Academy Press, 1997
Fox-Grage W, Folkemer D, Lewis J: The States' Response to the Olmstead Decision: How Are States Complying? 2008. Available at http://www.ncsl.org/programs/health/forum/olmsreport.htm. Accessed March 4, 2008.
Fries J: Aging, natural death, and the compression of morbidity. N Engl J Med 303:130–135, 1980
Fries J: Compression of morbidity, in Encyclopedia of Aging, 3rd Edition. Edited by Maddox G. New York, Springer, 2001, pp 234–236
Glaser B: Doing Grounded Theory: Issues and Discussions. Mill Valley, CA, Sociology Press, 1998
Goldman HH, Morrissey JP, Ridgely MS: Evaluating the Robert Wood Johnson Foundation program on chronic mental illness. Milbank Q 72:37–47, 1994
Goldsmith S, Eggers W: Governing by Network: The New Shape of the Public Sector. Washington, DC, Harvard University and the Brookings Institution, 2002
Hacker J: "The Great Risk Shift": Issues for Aging and Public Policy. Public Policy and Aging Report 17:2, 2007
Hasnain-Wynia R: Overview of the community care network demonstration program and its evaluation. Med Care Res Review 60:5S–16S, 2003
Health Affairs: New Mental Health Care Market 18(5):1–255, 1999
Health Affairs: Chronic Care in America 20(6):1–286, 2001
Institute of Medicine: Crossing the Quality Chasm. Washington, DC, National Academies Press. 2001. Available at http://books.nap.edu/openbook.php?record_id=10027&page=R1. Accessed March 4, 2008.
Institute of Medicine: First Annual Quality Chasm Summit: Focus on Communities. Washington, DC, National Academies Press. 2004. Available at http://books.nap.edu/openbook.php?record_id=11085&page=R1. Accessed March 4, 2008.
Kahana E: "De-institutionalization," in Encyclopedia of Aging, 3rd Edition. Edited by Maddox G. New York, Springer, 2001, pp 273–276
Kiwachi I, Berkman L: Social cohesion, social capital, and health, in Social Epidemiology. Edited by Berkman L, Kawachi I. New York, Oxford University Press, 2000, pp 174–190
Lindblom C: The science of "muddling through." Public Adm Rev 19:79–88, 1959
Maddox G: Muddling through: planning health services in England. Med Care 9:439–448, 1971
Maddox G: Long-term care in comparative perspective. Ageing Soc 12:335–368, 1992
Maddox G: General practice fundholding in the British National Health Service: accounts of the dynamics of change. J Health Polit Policy Law 24:815–834, 1999
Maddox G: Housing and living arrangements, in Handbook of Aging and the Social Sciences, 5th Edition. Edited by Binstock R, George L. San Diego, CA, Academic Press, 2001, pp 426–443
Mahoney K, Simon-Rasinowitz L, Mares L: Cash payments for care, in Encyclopedia of Aging, 3rd Edition. Edited by Maddox G. New York, Springer, 2001, pp 167–70
Marmor T: The Politics of Medicare. New York, Aldine de Gruyter, 2000
Meier D, Morrison R (eds): Care at the End of Life: Restoring a Balance. Generations 23, 1999
Meiners M, Mahoney K, Shoop D, et al: Consumer direction in managed long-term care: an exploratory survey of practices and perceptions. Gerontologist 42:32–38, 2002
Mitchell S, Shortell S: The governance and management of effective community health partnerships: a typology of research, policy and practice. Milbank Q 78:241–289, 2000
Mor V, Allen S: Hospice, in Encyclopedia of Aging, 3rd Edition. Edited by Maddox G. New York, Springer, 2001, pp 507–509
Morrissey JP, Goldman HH, Klerman LV: The Enduring Asylum. New York, Grune & Stratton, 1980
National Center for Health Statistics: Health, United States 2006, With Chartbook on Trends in the Health of Americans (DHHS Publ No 2006-1232). Hyattsville, MD, U.S. Department of Health and Human Services, 2006
National Council on Disability: Consumer-directed health care: how well does it work? October 26, 2004. Available at http://www.ncd.gov/newsroom/publications/2004/consumerdirected.htm. Accessed March 5, 2008.
National Governors Association: A Lifetime of Health and Dignity: Confronting Long-Term Care Challenges in America. February 1, 2003. Available at http://www.nga.org/portal/site/nga/menuitem.5cd31a89efe1f1e122d81fa6501010a0/?vgnextoid=295c4c33c7732010VgnVCM1000001a01010aRCRD&vgnextchanel=4b18f074f0d9ff00VgnVCM1000001a 01010aRCRD. Accessed March 4, 2008.
Nelson G, Lord J, Ochoocka J: Shifting the Paradigm in Community Mental Health: Towards Empowerment and the Community. Toronto, Canada, University of Toronto Press, 2001
Olmstead v L.C (98-536) 527 US 581 138 F3d 893 (1999), affirmed in part, vacated in part, and remanded.
Polivka L: The ethical and empirical basis for consumer-directed care for frail elderly. Contemp Gerontol 7:50–52, 2000
Pressman J, Wildavsky A: Implementation. San Francisco, University of California Press, 1984
Schulz R, Maddox G, Lawton P (eds): Interventions Research With Older Adults. Annu Rev Gerontol Geriatr 18, 1998
Senge P: The Fifth Discipline: The Art and Practice of Learning Organization. New York, Doubleday/Currency, 1990
Shortell SM, Zukoski AP, Alexander JA, et al: Evaluating partnerships for community health improvement: tracking the footprints. J Health Polit Policy Law 27:49–91, 2002
Smith D: Reinventing Care: Assisted Living in New York City. Nashville, TN, Vanderbilt University Press, 2003
Tilly J, Wiener J, Cueller A: Consumer-directed home and community care in five countries: policy issues for older adults and government. October 2000. Available at http://www.urban.org/publications/410330.html. Accessed March 3, 2008.
Vachon A: Americans With Disabilities Act, in Encyclopedia of Aging, 3rd Edition. Edited by Maddox G. New York, Springer, 2001, pp 91–83
Van Citters AD, Bartus S: A systematic review of the effectiveness of community-based outreach mental health services for older adults. Psychiatr Serv 55:1237–1249, 2004
von Bertalanffy B: General Systems Theory. New York, George Braziller, 1968
Wagner EH, Austin BT, Davis C, et al: Improving chronic illness care: translating evidence into action. Health Aff (Millwood) 20:64–78, 2001

CME Activity

Add a subscription to complete this activity and earn CME credit.
Sample questions:
In the U.S. population, disability that results in institutional care has been
The most notable example of federal policy innovation in long-term care is the modification of Medicaid under the Reagan administration's home- and community-based care (HCBS) waivers. This provision
Hospice care is designed to achieve a number of goals. Which of the following is not one of these goals?
Citing articles are presented as examples only. In non-demo SCM6 implementation, integration with CrossRef’s "Cited By" API will populate this tab (http://www.crossref.org/citedby.html).
Related Content
The American Psychiatric Publishing Textbook of Psychiatry, 5th Edition > Chapter 37.  >
The American Psychiatric Publishing Textbook of Geriatric Psychiatry, 4th Edition > Chapter 3.  >
The American Psychiatric Publishing Textbook of Geriatric Psychiatry, 4th Edition > Chapter 7.  >
The American Psychiatric Publishing Textbook of Geriatric Psychiatry, 4th Edition > Chapter 9.  >
The American Psychiatric Publishing Textbook of Geriatric Psychiatry, 4th Edition > Chapter 11.  >
Topic Collections
Psychiatric News
Read more at Psychiatric News >>
PubMed Articles
  • Print
  • PDF
  • E-mail
  • Chapter Alerts
  • Get Citation