Dementia is a disease characterized by a loss of memory and other cognitive functions that is severe enough
to interfere with daily living. In 2023, an estimated 6.7 million Americans who are 65 years and older are living
with dementia (Alzheimer's disease or related dementias, ADRD). Approximately one-third of people living with
dementia (PLWD) have highly “fragmented ambulatory care,” or care diffusely spread across many ambulatory
providers. In one national study, PLWD who had highly fragmented ambulatory care had an average of 16
ambulatory visits to 7 different providers in a given year, compared with 11 visits to 3 providers for those with
the least fragmented care. Having multiple providers may be clinically appropriate, but it creates challenges,
because providers do not consistently communicate with each other, even in the era of electronic health
records. When providers do not communicate with each other, harm for patients can follow. Fragmented
ambulatory care may be an overlooked but modifiable contributor to some key problems in healthcare delivery,
such as delayed or missed diagnoses of dementia (including racial disparities in dementia diagnoses).
Similarly, fragmented care may be leading to more prescribers of medication and more polypharmacy (i.e., the
use of ≥5 medications), which may be contributing to excess emergency department visits and hospitalizations
among PLWD. Filling these gaps in knowledge is necessary for informing the design of future interventions.
The proposed project, “Understanding Ambulatory Care Utilization in Alzheimer's Disease and Related
Dementias (ACUA),” will illuminate the role of fragmented care in the diagnosis of dementia and in the care of
PLWD, while identifying novel opportunities for intervention. Aim 1 will involve secondary analyses of two NIA-
funded cohort studies linked to claims (the Health and Retirement Study [N ≈ 3,425] and the REasons for
Geographic and Racial Disparities in Stroke study [N ≈ 3,235]), to determine whether fragmentation is
associated with delayed or missed diagnoses of dementia, including racial disparities in diagnoses. Aim 2 will
involve secondary analyses of national Medicare claims (100% sample) to determine whether fragmentation is
associated with more unique prescribers of medication and whether that, in turn, leads to more polypharmacy
and excess emergency department visits and hospitalizations (N ≈ 4.5 million). Aim 3 will consist of one-on-
one semi-structured interviews with a variety of stakeholders who are involved in dementia care, to determine
their preferences regarding who should address fragmented care for PLWD, when, and how (for example,
whether the goal of future interventions should be to decrease unnecessary fragmentation or to ameliorate its
adverse effects) (N ≈ 50). This project will generate robust, data-driven insights, which will enable future
development of novel interventions to improve ambulatory care and outcomes for PLWD.