Care trajectories in a cohort of nursing home long‐stay residents with dementia, 2011‐2016

Background Care transitions are very common among nursing home (NH) residents with dementia and many of these are deemed inappropriate or avoidable. The study aimed to identify the main care trajectories where NH residents with dementia were receiving care in a cohort from entry to death (or censoring). Method This is a retrospective cohort study of Minnesota NH residents with dementia. The study cohort consisted of 2,550 long‐stay residents (≥ 100 days) aged 65 years and older with a diagnosis of dementia who received NH care in Minnesota beginning at 2011. Monthly health care transitions for the cohort was tracked over a 60‐month period. Result We found four distinct trajectories among long‐stay NH residents with dementia over the 5‐year period were: 1) residents who died early with high hospitalization and ER visits (n = 967, 37.9%), 2) residents who died later and before death had high hospitalization and ER visits (n = 743, 29.1%), 3) residents who remained in NH (n = 643, 25.2%), and 4) residents who transferred from NH to community (n = 197, 7.7%). Relative to residents who remained in the NH (trajectory 3), residents who died early with high hospitalization and ER visits (trajectory 1) had the severest cognitive impairment, the highest level of depression, and the highest percentages of heart failure, renal failure, cancer, coronary artery disease, and lung disease. Residents who died later (trajectory 2) had the second severest cognitive impairment and the highest percentages of hip fracture and delirium. Residents who transferred to community (trajectory 4) had the best cognitive function and lowest percentages of hip fracture, cancer, lung disease and respiratory failure. Conclusion Residents in the cohort with more severe dementia and multiple comorbidities tended to die either early (trajectory 1) or later in their stays (trajectory 2). In both trajectories, the residents bounced back and forth between nursing facility, ER, and hospital before death. Findings point to the importance of advanced care planning and palliative care for the large percentage NH residents (67% in this study) who are at increased risk of multiple acute care transfers at the end of life.