Advanced dementia is a common, morbid and costly condition. The current standard of palliative care provided to the growing number of Americans dying with dementia is sub-optimal. The challenge of accurately estimating the life expectancy in advanced dementia is a major barrier to providing this care. Prognostication is needed to inform clinical decision-making and to access the Medicare hospice benefit. Hospice grossly under-serves persons with dementia largely due to difficulties predicting six-month survival. Current hospice eligibility guidelines for dementia are not based on empircally derived prognostic measures, and therefore completely fail to accurately estimate survival. Thus, the over-riding goal of the ADEPT study is to create a valid and practical risk score, the Advanced DEmentia Prognostic Tool, which will identify persons with advanced dementia at a high risk of death. To accomplish this goal, and building on the success of earlier work by the PI, we will develop the risk score using secondary data from a nationwide nursing home (NH) database, and then prospectively validate the score at the bedside.
Our aims are: 1 To derive and validate a mortality risk score in a nationwide population of 237,783 NH residents with advanced dementia using 2002 Minimum Data Set (MDS) assessments; 2. To compare the accuracy of the risk score to predict six-month survival with current hospice eligibility criteria for dementia using 2002 MDS assessments; 3. To establish a cohort of 400 NH residents with advanced dementia and conduct a second, prospective validation of the mortality risk score to demonstrate that the tool is practical and effective at the bedside; and 4. To conduct a second, prospective comparison of the accuracy of the ADEPT risk score with hospice eligibility criteria for dementia. Implications: The proposed work to create a valid and practical instrument to estimate survival in advanced dementia, represents an opportunity to improve end-of-life decision-making and promote access to hospice services for the over 4.5 million Americans with dementia. The ADEPT instrument will also provide palliative care researchers with a method to identify subjects with advanced dementia at high mortality risk. Thus, the information derived from this study has the potential to make important clinical, research and policy-relevant contributions to the care of older persons with dementia at the end-of-life. ? ? ?

National Institute of Health (NIH)
National Institute on Aging (NIA)
Research Project (R01)
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Health Services Organization and Delivery Study Section (HSOD)
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Buckholtz, Neil
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Hebrew Rehabilitation Center for Aged
United States
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Mitchell, Susan L; Miller, Susan C; Teno, Joan M et al. (2010) The advanced dementia prognostic tool: aýýrisk score to estimate survival in nursing home residents with advanced dementia. J Pain Symptom Manage 40:639-51
Mitchell, Susan L; Miller, Susan C; Teno, Joan M et al. (2010) Prediction of 6-month survival of nursing home residents with advanced dementia using ADEPT vs hospice eligibility guidelines. JAMA 304:1929-35