Family Caregivers as Members of the Alzheimer’s Treatment Team

  • Jeffrey N. Nichols
Part of the Caregiving: Research • Practice • Policy book series (CARE)


Alzheimer’s is a common disease with predictable neuropathology changes and characteristic functional declines. Family members of people with Alzheimer’s disease most frequently generate the impetus for workup and diagnosis, since it is a hallmark feature of the disease that patients lack the ability to recognize their own functional decline. Following initial diagnosis, family caregivers find themselves directing a series of multiplying and complex interactions with the health care system on behalf of their afflicted relations as the disease pursues its course through complications to the finality of death. Alzheimer’s disease patients are hospitalized more frequently and, when hospitalized, experience significantly longer lengths of stay than matched controls. Sixty-three (63) percent of Medicare expenditures for patients with Alzheimer’s disease are for in-patient hospital care (Lyketos, Sheppard, & Rabins, 2000). More than 60 % of residents in skilled nursing facilities suffer from dementia (Matthews & Deming, 2002; Rovner et al., 1990). This cognitive dysfunction (not always but primarily Alzheimer’s disease) is usually the major reason for institutional care. The role of the family caregiver in this progression is pivotal, the responsibility enormous. This chapter will consider the pivotal role of the family caregiver, the shortcomings inherent in current modes of practice and reimbursement, as well as the direction of promising new approaches, and the need for ongoing research to firmly establish a justification for a major paradigmatic shift.


Nursing Home Family Caregiver Traditional Paradigm Home Care Agency Major Paradigmatic Shift 
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  1. American Journal of Geriatric Psychiatry, 6 S1 (1998). Lippincott, Williams & Wilkins.Google Scholar
  2. American Medical Directors Association. Clinical practice guideline: Dementia. Available for purchase from the organization http://www.amda./tools/guidelinesGoogle Scholar
  3. Covinsky, K. E., Palmer, R. M., Fortinsky, R. H., Counsell, S. R., Stewart, A. L., Kresevic, D., et al. (2003). Loss of independence in activities of daily living in older adults hospitalized with medical illnesses. Journal of the American Geriatrics Society, 51(4), 451–458.PubMedCrossRefGoogle Scholar
  4. Dang, S., Badiye, A., & Kelkar, G. (2008). The dementia caregiver—a primary care approach. Southern Medical Journal, 101(12), 1248–1251.CrossRefGoogle Scholar
  5. Dougal, R. L., Anderson, J. H., Reavy, K., & Shirazi, C. C. (2011). Family presence during resuscitation and/or invasive procedures in the emergency department: One size does not fit all. Journal of Emergency Nursing, 37(2), 152–157.PubMedCrossRefGoogle Scholar
  6. Fick, D., & Foreman, M. (2000). Consequences of not recognizing delirium superimposed on dementia in hospitalized elderly individuals. Journal of Gerontologic Nursing, 26(1), 30–40.Google Scholar
  7. Fortinsky, R. H., Zlateva, I., Delaney, C., & Kleppinger, A. (2010). Primary care physicians dementia care practices. The Gerontologist, 50(2), 179–191.PubMedCrossRefGoogle Scholar
  8. Kitwood, T. (1997). Dementia reconsidered: The person comes first. Buckingham: Open University Press.Google Scholar
  9. Levine, C. (1999). The loneliness of the long-term caregiver. The New England Journal of Medicine, 340, 1587–1590.PubMedCrossRefGoogle Scholar
  10. Lyketos, C. G., Sheppard, J. M., & Rabins, P. V. (2000). Dementia in elderly persons in a General Hospital American. Journal of Psychiatry, 157, 704–707.Google Scholar
  11. Mace, N. L., & Rabins, P. V. (2001). The 36-hour day (multiple editions available including Johns Hopkins University Press copyright 1981 and 3rd Edition Warner Books 2001).Google Scholar
  12. Matthews, F., & Deming, T. (for the UK Medical Research Council Cognitive Function and Ageing Study) (2002). Prevalence of dementia in institutional care. The Lancet, 360, 225–226.Google Scholar
  13. Medicare Benefit Policy Manual. Summaries of Medicare benefits are available in Medicare and You and multiple publications from the Center for Medicare and Medicaid Services. Legal definitions are only available through
  14. Nichols, J. N., & Heller, K. S. (2002). Windows to the heart: Creating an acute care dementia unit. Journal of Palliative Medicine, 1, 181–192.CrossRefGoogle Scholar
  15. Parks, S. M., & Novielli, K. D. (2000). A practical guide to caring for caregivers. American Family Physician, 62(12), 2613–2622.PubMedGoogle Scholar
  16. Rovner, B. W., German, P. S., Broadhead, J., Morriss, R. K., Brant, L. J., Blaustein, J., et al. (1990). The prevalence and management of dementia and other psychiatric disorders in nursing homes. International Psychogeriatrics, 2, 13–24.PubMedCrossRefGoogle Scholar
  17. Schoenmakers, B., Buntinx, F., & Delepeleire, J. (2009). What is the role of the general practitioner towards the family caregiver of a community-dwelling demented relative? A systematic literature review. Scandinavian Journal of Primary Health Care, 27(1), 31–40.PubMedCrossRefGoogle Scholar
  18. Silverstein, N. M., & Maslow, K. (Eds.). (2006). Improving hospital care for persons with dementia. New York: Springer.Google Scholar
  19. Yaffe, M. J., Orzeck, P., & Barylak, L. (2008). Family physicians’ perspectives on care of dementia patients and family caregivers. Canadian Family Physician, 54(7), 1008–1015.PubMedGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2013

Authors and Affiliations

  1. 1.Our Lady of Consolation and Good Samaritan NursingCatholic Health Services of Long IslandSuffolk CountyUSA

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