End-of-life dementia: demographic, clinical as well as direct health care cost differences in nursing homes vs. ordinary housing

BACKGROUND: In late stages, dementia is a palliative diagnosis and the majority of those affected are cared for in nursing homes, but some manage in ordinary housing. The aim was to study how these two groups differ as regards clinical characteristics, healthcare utilization and costs. METHODS: A registry study (Region Stockholm) was performed on deceased patients (≥ 18 years) with a dementia diagnosis during their last year of life, for the years 2015-2023. Pairwise comparisons between nursing homes and ordinary housing were made and multivariable binary logistic regression models were created. RESULTS: Persons in ordinary housing were significantly younger (84 vs. 86 years old), more often male (51% vs. 39%), they had higher frailty risk scores (Hospital Frailty Risk Scores) and had more often a concomitant metastatic cancer (9% vs. 2%), p < 0.0001 in all comparisons. To meet the care needs, these persons received more often specialized palliative care, they had a higher use of geriatric services, they had more emergency room visits and died more often in emergency hospitals, p < 0.0001 in all comparisons. In contrast, those who were referred to nursing homes were more often women, older, they had more often Alzheimer´s disease (compared to other dementias), p < 0.0001 in all comparisons. As regards medical utilization, the associated costs were equally distributed between women and men in ordinary housing, whereas the costs were significantly higher for men compared with women in nursing homes. CONCLUSIONS: Persons with late-stage dementia in ordinary housing are more often younger, men and they have more often comorbidities, including cancer. They have significantly higher health care utilization, and the costs are equally distributed between women and men.