Abstract
The end-of-life period of individuals with Alzheimer disease and related dementias receiving home health care (HHC) is understudied. We sought to describe characteristics of HHC patients with Alzheimer disease and related dementias at risk of death within a year, based on clinician assessment. We conducted a secondary data analysis of a 5% random sample of the Outcome and Assessment Information Set data set for the year 2017. We used Outcome and Assessment Information Set-C item M1034 to identify HHC patients with overall status of progressive condition leading to death within a year. Multivariable logistic regression model was used to examine the association between sociodemographic, functional, clinical, and caregiving factors and likelihood of decline leading to death within a year, as identified by HHC clinicians. Clinician perception of decline leading to death within a year was higher for Whites (vs Blacks or Hispanics) (odds ratio [OR], 0.74 [95% confidence interval (CI), 0.69-0.80], and OR, 0.63 [95% CI, 0.57-0.69], respectively). Factors associated with increased odds of decline leading to death within a year included daily pain (OR, 1.11 [95% CI, 1.06-1.17]), anxiety daily or more often (OR, 1.58 [95% CI, 1.49-1.67]), shortness of breath (OR, 1.45 [95% CI, 1.34-1.57]), use of oxygen (OR, 1.60 [95% CI, 1.52-1.69]), disruptive behavior (OR, 1.26 [95% CI, 1.20-1.31]), and feeding difficulty (OR, 2.25 [95% CI, 2.09-2.43]). High symptom burden exists among HHC patients with Alzheimer disease and related dementias identified to have a status of decline leading to death within a year.