END OF LIFE CARE IN LATE STAGE DEMENTIA

Johns Hopkins University, Baltimore MD

Investigators

Linked publications & trials

Abstract

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.