Hospice Care for Patients with Dementia

Susan L. Mitchell, Dan K. Kiely, Susan C. Miller, Stephen R. Connor, Carol Spence, Joan M. Teno

Research output: Contribution to journalArticlepeer-review

70 Scopus citations


Dementia is a leading cause of death in the USA. Although guidelines exist to determine hospice eligibility for dementia, only a small percentage of patients dying with this condition receive hospice care. Hospice recipients with dementia have not been well characterized, and little is known about the quality of care they receive. The Family Evaluation of Hospice Care (FEHC) survey was adopted by the National Hospice and Palliative Care Organization (NHPCO) in 2003 as a standard benchmarking tool. The FEHC collects data from bereaved families regarding the quality of hospice care. An online repository of 2005 FEHC data was used to describe hospice recipients over 65 years of age who died with dementia and to examine their families' evaluation of hospice care. Decedents with cancer and chronic terminal conditions were also analyzed for comparison purposes. A total of 77,123 surveys submitted by 796 hospices nationwide met the study's eligibility criteria. Decedent diagnoses were as follows: dementia, n = 8,686 (11.3%); cancer, n = 35,693 (46.3%); and other chronic diseases, n = 32,744 (42.4%). Decedents with dementia were more likely to be >85 years, female, and have length of stays >180 days. Evaluation of care in all FEHC domains did not significantly differ between groups. Approximately three-quarters of bereaved family members of decedents in all groups perceived the overall quality of care as excellent; however, opportunities to improve care were also identified. These data suggest that the evaluation of hospice care for older patients is generally high, and does not vary with respect to terminal diagnoses.

Original languageEnglish (US)
Pages (from-to)7-16
Number of pages10
JournalJournal of Pain and Symptom Management
Issue number1
StatePublished - Jul 2007
Externally publishedYes


  • Hospice
  • dementia
  • family
  • satisfaction
  • survey

ASJC Scopus subject areas

  • Nursing(all)
  • Clinical Neurology
  • Anesthesiology and Pain Medicine


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