Project Abstract
All persons with Alzheimer’s disease and related dementias (ADRD) will experience behavioral symptoms of
dementia (BSD). Management of BSD is one of the most frequent daily tasks caregivers perform, which includes
deciding when to administer an “as needed” medication to address BSD. Non-pharmacologic strategies are the
recommended first-line approach to manage BSD, though “as needed” medications can be warranted when non-
pharmacologic strategies fail and the BSD are either causing distress to the care recipient or jeopardizing the
physical safety of the care recipient or caregiver. Conversely, chemical restraint means a drug is being
administered to make care more convenient for the caregiver, not because it is medically indicated. Our team
has reported that 22% of ADRD family caregivers inappropriately administer medications as chemical restraints.
Importantly, there are no evidence-based indications for pharmacotherapeutic management of a patient
symptom for the benefit of a caregiver, aside from safety. Thus, this high prevalence is concerning, and
represents an emerging public health crisis and major gap in knowledge. Given the novelty of this newly
described phenomenon, the purpose of this study is to describe patterns of medication administration, chemical
restraint, and associated mortality outcomes in ADRD family caregiving. To address this, we will conduct a 31-
day micro-longitudinal study in which family caregivers (N=300) complete daily diaries describing BSD
management including use of non-pharmacologic strategies and medications. These data will be supplemented
with personal characteristics of the caregivers obtained through an enrollment survey, clinical characteristics of
care recipients found in their EHR and combined with vital records data on the care recipient’s mortality. This
proposed study will implement an innovative algorithm to classify medication administration as medically
indicated, potentially inappropriate and chemical restraint in consideration of non-pharmacologic strategies tried,
safety concerns, and distress of the care recipient (Aim 1). This study will also characterize patterns of chemical
restraint to create typologies and determine characteristics of chemical restraint users (Aim 2), and determine
the relationship between chemical restraint use and 1-year mortality of the care recipient (Aim 3). This study is
the first step towards creating sensitive clinical assessments to identify situations at high risk of adverse
outcomes related to caregiving practices. This foundational work will support a long-term research goal to
evaluate if randomizing caregivers to screening for chemical restraint results in greater reduced morbidity and
mortality for care recipients than the observed harms.