Dementia affects 6-8% of Americans over age 65 and 20-30% of those over age 85. As a result, 3-4 million individuals suffer from dementia. Most dementias cause progressive decline in cognition and function and result in or predispose to death. End of life (EOL) care for persons with dementia differs in several important ways from EOL care in other diseases; therefore, findings about EOL care in other illnesses cannot be extrapolated to EOL care in dementia. This study seeks to address two broad research questions: (1) What are the common treatment decisions made at the EOL for persons with dementia and how are those decisions made? and (2) What factors are associated with less discomfort for the patient, less emotional distress for the surrogate and greater surrogate satisfaction with the patient's EOL care? Subjects for the study will be residents of 3 long-term care residential facilities in the Baltimore area who have end-stage dementia, as defined by eligibility for hospice care (i.e., a prognosis of 6 months or less), their surrogate decision makers and their clinicians. Approximately 150 residents from the 3 facilities will be followed during their final months of life to monitor their cognitive status, level of comfort and quality of life, and chart reviews will be used to identify the treatment and management procedures used to care for them. Surrogates will be interviewed at baseline, at 3-month intervals during the patient's last months of life and once following the patient's death to assess their emotional state and, in the final interview, to determine their satisfaction with EOL care. Quantitative methods will be used to examine: (1) relationships between advance care planning and the aggressive of EOL medical care to patient's level of discomfort, (2) relationships between advance care planning and patient discomfort to surrogate's emotional state, and (3) the influence of patient discomfort and quality of life on surrogate's satisfaction with end of life care. Qualitative methods will be used to examine how surrogates, patients' physicians and other clinicians communicate about and make treatment decisions for the patient. Findings from this study will be of use in developing interventions to improve the quality of EOL care in dementia.
| Rabins, Peter V; Hicks, Kathryn L; Black, Betty S (2011) Medical Decisions Made by Surrogates for Persons with Advanced Dementia within Weeks or Months of Death. AJOB Prim Res 2:61-65 |
| Cordner, Zachary; Blass, David M; Rabins, Peter V et al. (2010) Quality of life in nursing home residents with advanced dementia. J Am Geriatr Soc 58:2394-400 |
| Hicks, Kathryn L; Rabins, Peter V; Black, Betty S (2010) Predictors of mortality in nursing home residents with advanced dementia. Am J Alzheimers Dis Other Demen 25:439-45 |
| Black, Betty S; Fogarty, Linda A; Phillips, Hilary et al. (2009) Surrogate decision makers' understanding of dementia patients' prior wishes for end-of-life care. J Aging Health 21:627-50 |
| Maust, Donovan T; Blass, David M; Black, Betty S et al. (2008) Treatment decisions regarding hospitalization and surgery for nursing home residents with advanced dementia: the CareAD Study. Int Psychogeriatr 20:406-18 |
| Triplett, Patrick; Black, Betty S; Phillips, Hilary et al. (2008) Content of advance directives for individuals with advanced dementia. J Aging Health 20:583-96 |
| Kverno, Karan S; Rabins, Peter V; Blass, David M et al. (2008) Prevalence and treatment of neuropsychiatric symptoms in advanced dementia. J Gerontol Nurs 34:8-15;quiz 16-7 |
| Kverno, Karan S; Black, Betty S; Blass, David M et al. (2008) Neuropsychiatric symptom patterns in hospice-eligible nursing home residents with advanced dementia. J Am Med Dir Assoc 9:509-15 |
| Blass, David M; Black, Betty S; Phillips, Hilary et al. (2008) Medication use in nursing home residents with advanced dementia. Int J Geriatr Psychiatry 23:490-6 |
| Black, Betty S; Rabins, Peter V (2007) Qualitative research in psychogeriatrics. Int Psychogeriatr 19:167-73 |
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