Prognostication in Alzheimer's Disease and Related Dementias

Because Alzheimer's Disease and Related Dementias (ADRD) are associated with significant and progressive disease burden, including loss of decision-making capacity, physical and neuropsychiatric symptoms, and prolonged dependency, nursing home (NH) care is common for people living with late-stage ADRD. Yet, clinical decline of NH residents is slow and predicting lifespan is difficult. Enhanced prognostic understanding and shared decision-making allows for medical, legal, financial, and emotional preparation for the realities of irreversible disease. For NH clinicians, prognostication has pronounced implications for goal-concordant care to people living with dementia (PLWD). Hospice provides comfort-oriented care, emphasizing patient-tailored elements of quality of life, including time with family, access to nature, and music. In late-stage ADRD, studies show that a majority of families prioritize comfort-oriented treatment, and understanding prognosis may help them align treatments accordingly. Yet, only 15% of people enrolled in hospice with a primary diagnosis of ADRD. This is due to difficulty estimating 6-month prognosis required for hospice eligibility—ADRD carries a prognosis of 12–18 months in the latest stage. While low rates of live discharges from hospice are a regulatory requirement for hospices, people who are increasingly experiencing ADRD progression lose access to those beneficial hospice services. In the current model of hospice care, accurate 6-month prognostication in NHs can enhance beneficial access to hospice services for PLWD, including those who have a primary diagnosis complicated by co-occurring ADRD at any stage.