In the past decade, researchers and advocates have taken important steps toward understanding the full costs of Alzheimer’s disease and related dementias. However, our current approach to framing these costs does not fully consider the behavioral symptoms of dementia, notably agitation. Agitation in Alzheimer’s disease contributes to negative social and financial outcomes for people with the condition, their care partners, and health systems. When left untreated, the negative impact of these outcomes is exacerbated, yet the full scale of this impact is unknown. “Cost Considerations of Untreated Agitation” seeks to propose a framework to help in evaluating the variables that impact these costs.

We created a model that investigates each stage of Alzheimer’s disease with agitation. This model assesses direct, indirect, and intangible costs of the disease. Direct costs include professional caregiving, non-pharmacological intervention, nursing home costs, healthcare professional consultations, and hospitalizations. Indirect costs included loss of income and value of unpaid caregiving. Intangible costs include the mental health impact of agitation on individuals living with Alzheimer’s and their care partners. Additionally, we used quality-adjusted life years to measure disease burden and health outcomes. Finally, we leveraged qualitative research to overlay the experience of care partners and individuals with lived experience to bring their voice to this work.

Results are a tentative framework and describe what additional research and input is necessary in order to create a version with which one can assess the comprehensive costs of untreated agitation in Alzheimer’s. This framework will include perspectives and feedback from individuals with lived experience, care partners, and key opinion leaders in Alzheimer’s research from across the world.

Agitation has severe consequences on individuals, families, and health systems. Oftentimes one of the first symptoms of Alzheimer’s or dementia, agitation can increase the caregiving responsibilities, trigger placement into nursing homes, and cause severe emotional and physical toll on care partners. We cannot understand the full costs of dementia or AD until we account for untreated agitation vis-à-vis a multi-symptom assessment, therefore an accepted framework is necessary in order to fully consider the costs of untreated agitation.