Importance: Most older adults living with dementia ultimately need nursing home level of care (NHLOC).
Objective: To develop models to predict need for NHLOC among older adults with probable dementia using self-report and proxy reports to aid patients and family with planning and care management.
Design, setting, and participants: This prognostic study included data from 1998 to 2016 from the Health and Retirement Study (development cohort) and from 2011 to 2019 from the National Health and Aging Trends Study (validation cohort). Participants were community-dwelling adults 65 years and older with probable dementia. Data analysis was conducted between January 2022 and October 2023.
Exposures: Candidate predictors included demographics, behavioral/health factors, functional measures, and chronic conditions.
Main outcomes and measures: The primary outcome was need for NHLOC defined as (1) 3 or more activities of daily living (ADL) dependencies, (2) 2 or more ADL dependencies and presence of wandering/need for supervision, or (3) needing help with eating. A Weibull survival model incorporating interval censoring and competing risk of death was used. Imputation-stable variable selection was used to develop 2 models: one using proxy responses and another using self-responses. Model performance was assessed by discrimination (integrated area under the receiver operating characteristic curve [iAUC]) and calibration (calibration plots).
Results: Of 3327 participants with probable dementia in the Health and Retirement Study, the mean (SD) age was 82.4 (7.4) years and 2301 (survey-weighted 70%) were female. At the end of follow-up, 2107 participants (63.3%) were classified as needing NHLOC. Predictors for both final models included age, baseline ADL and instrumental ADL dependencies, and driving status. The proxy model added body mass index and falls history. The self-respondent model added female sex, incontinence, and date recall. Optimism-corrected iAUC after bootstrap internal validation was 0.72 (95% CI, 0.70-0.75) in the proxy model and 0.64 (95% CI, 0.62-0.66) in the self-respondent model. On external validation in the National Health and Aging Trends Study (n = 1712), iAUC in the proxy and self-respondent models was 0.66 (95% CI, 0.61-0.70) and 0.64 (95% CI, 0.62-0.67), respectively. There was excellent calibration across the range of predicted risk.
Conclusions and relevance: This prognostic study showed that relatively simple models using self-report or proxy responses can predict need for NHLOC in community-dwelling older adults with probable dementia with moderate discrimination and excellent calibration. These estimates may help guide discussions with patients and families in future care planning.