Date of Award

12-2022

Document Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Department

Public Health Services

Committee Chair/Advisor

Khoa Truong, PhD

Committee Member

Cheryl Dye, PhD

Committee Member

Windsor Sherrill, PhD

Committee Member

John Absher, MD

Abstract

Alzheimer’s disease and related dementias (ADRD) affect millions of people worldwide; however, there has yet to be a method of prevention or cure developed. In the United States (US) and other developed nations, healthcare utilization and cost associated with ADRD is pronounced. In 2018, healthcare costs totaled $259 billion in the US. The current system of care is fracturing under the pressure caused by ADRD and other illnesses. To begin addressing the public health crisis, this dissertation uses the South Carolina (SC) Alzheimer’s Disease Registry (AD Registry) and the SC Emergency Department (ED) Patient Encounter Data to analyze 11 years of data to identify healthcare utilization patterns seven years before and five years after an ADRD diagnosis. This extends the analysis of healthcare utilization beyond the typical two to four years pre- or post-ADRD diagnosis. Additionally, there are only three AD registries in the nation, and healthcare utilization analysis usually relies only on Medicare claims data. Using the SC AD Registry afforded greater confidence in the establishment of whether encounters occurred pre- or post-diagnosis. It was uncovered that in addition to the spike in healthcare utilization 12 to 24 months documented in other studies, there was also a spike in ED utilization approximately 72 months before diagnosis. This corresponds to the time that patients generally start reporting the non-descript symptoms of ADRD. Building on this, across the 11 years, Black patients with ADRD were significantly more likely to have more ED encounters. Age at diagnosis also contributed to healthcare utilization. Black patients who were diagnosed between the ages of 65 and 69 had significantly more ED encounters for every year compared to Whites diagnosed at age 80 or later. The reasons for ED encounters were most commonly related to urinary tract infections, which falls within the Agency on Healthcare Research and Quality ambulatory care sensitive conditions (ACSC). These conditions are used as quality measures for primary care and should not require hospital care if prevented or treated with primary care. Further, when exploring ACSC preventable versus non-preventable conditions, there was very little difference between whether a patient was admitted to the hospital or discharged to self. Taking the findings together, it does not appear that the healthcare system is effectively managing the ADRD patient’s care. There are likely systematic changes that need to occur as well as retraining on who society views as the primary gatekeeper for medical care. While it is typically believed that the primary care physician is the main gatekeeper, it becomes abundantly clear with the ADRD patient that there is a gatekeeper that precedes the physician. A patient is the primary gatekeeper. The patient decides how and when to access care. In the case of the ADRD patient, at some point this responsibility extends beyond personal capabilities. Therefore, a caregiver is responsible for deciding when and how to seek healthcare. To account for this, recommendations for how to include the caregiver in treatment planning are provided as a method for altering the healthcare system and to mitigate the use of the high traffic - high-cost ED. Of primary importance is transitioning from a person-centered care model to a family- and person-centered care model so that caregivers are prepared for their inevitable role of gatekeeper and care decision maker. These efforts can be mutually beneficial for the system and the patient.

Author ORCID Identifier

0000-0001-7646-319X

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