Survival and determinants of mortality in nursing home residents with young onset dementia

People with young-onset dementia (YOD), defined as symptom onset before the age of 65, have mortality rates five to eight times higher than those of the general population of similar age. However, survival studies focused on individuals living in the community rather than those residing in nursing homes. This study aimed to estimate survival rates, its determinants, and causes of death in nursing home residents with YOD.

Survival data from the BEYOnD (2005-2018) and Care4Youngdem (2016-2021) cohort studies.

YOD special care units of 20 nursing homes in the Netherlands.

Nursing home residents with YOD (N = 385).

Kaplan-Meier estimates were used to determine survival times. Cox regression analysis examined factors associated with mortality, including age, sex, dementia type, and cardiovascular and pulmonary diseases. Hazard ratios were pooled using a random-effects meta-analysis.

Median survival after diagnosis was 8.9 years (95 % CI 7.8-10.1) in BEYOnD and 7.9 years (95 % CI 6.9-9.0) in Care4Youngdem. Median survival after admission was 6.3 (95 % CI 5.3-7.2) and 5.0 (95 % CI 4.4-5.6) years, respectively. In the pooled model, higher age at diagnosis (HR 1.06 per year increment) and male sex (HR 1.36) were significantly associated with higher mortality; dementia type and comorbidities were not. Cachexia or dehydration was the most frequent cause of death (35.3 %).

Nursing home residents with YOD have long survival times, in particular women and those diagnosed at younger ages. Our results highlight important considerations for prognostication and organizing long-term care.

NL-OMON23226 (Registry: OMON).