Palliative Care Research Projects at the Institute for Aging Research

Palliative Care Research Projects

With more than $4 million in federal and foundation funding, the Palliative Care Research Program for Older Adults at IFAR ranks among the top 10 percent of long-term palliative care research programs around the world. Major research projects are outlined below.

CASCADE: Choices, Attitudes, Strategies for Advanced Dementia at the End-of-Life

Principal Investigator: Susan L. Mitchell, M.D., M.P.H.
Funding:  NIH-NIA |  R01 AG024091
Duration: 10/01/04 - 9/31/09


CASCADE is a ongoing prospective cohort study that follows the course of nursing home residents with advanced dementia and their families during the end-stages of the disease and during the dying process. The goals of study are to describe and identify modifiable factors associated with:

  1.  the clinical course and natural history of advanced dementia
  2. decision making near the end-of-life
  3. satisfaction with end-of-life care
  4. complicated grief among family members

Related Publications:

  • Mitchell SL, Kiely DK, Jones RN, Prigerson H, Volicer L, Teno JM. Advanced dementia research in the nursing home: the CASCADE study. Alz Dis Assoc Disord 2006; 20:166-175.
  • Kiely DK, Volicer L, Teno JM, Jones RN, Prigerson HG, Mitchell SL. The validity and reliability of scales for the evaluation of end-of-life care in advanced dementia. Alz Dis Assoc Disord 2006; 20:176-186.
  • Engel S,  Kiely DK, Mitchell SL. Satisfaction with end-of-life care for nursing home residents with advanced dementia. J Amer Geriatr Soc 2006; 54:1567-72.
  • D'Agata E, Mitchell SL. Antimicrobial utilization among nursing home residents with advanced dementia. Arch Int Med, in press.

 The ADEPT study: Estimating Prognosis in Advanced Dementia NIH-NIA

Principal Investigator: Susan L. Mitchell, M.D., M.P.H.
Funding: R01 AG028423
Duration: 9/01/06 - 6/31/10


The main objective of the ADEPT study is to develop and validate a tool to estimate prognosis in advanced dementia. The tool will be derived from a nationwide Minimum Data Set database of from U.S. nursing homes. Once derived, the prognostic tool will be prospectively validated at the bedside of 400 nursing home residents with advanced dementia.

ADEPT Related Publications:

  • Mitchell SL, Kiely DK, Hamel MB, Park PS, Morris JN. Estimating prognosis for nursing home residents with advanced dementia. JAMA 2004; 291:2734-2740.
  • van der Steen JT, Mitchell SL, Frijters DHM, Kruse RL, Ribbe MW. Prediction of six-month mortality in nursing home residents with advanced dementia: validity of a risk score. J Amer Med Dir Assoc 2007; 8:464-468. 

Improving Hospice Care in Advanced Dementia

Principal Investigator: Susan L. Mitchell,M.D., M.P.H.
Funding: National Alzheimer's Association IIRG-05-13412
Duration: 11/01/05 - 10/31/07


This study examines an existing repository of 150,000 surveys collected nationwide by the National Hospice and Palliative Care Organization (NHPCO) from bereaved family members in order to compare the quality of hospice care provided to people who died with dementia versus other diagnoses.

Related Publications:

  1. Mitchell SL, Kiely DK, Miller SC, Connor SR, Spence C, Teno JM. Hospice care for patients with dementia. J Pain Sympt Manage 2007; 34:7-16.

  2. Rhodes RL, Mitchell SL, Miller SC, Connor SR, Teno JM. Bereaved family member's evaluation of hospice care:  what factors influence overall satisfaction with services? J Pain Sympt Manage 2007, in press

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