Presentation for the SCTR Scientific Retreat on Aging Related Research Examining Racial and Ethnic Differences among Individuals in the South Carolina Alzheimer’s Disease Registry ABSTRACT: The shift in age structure associated with population aging is one of the most distinctive and imperative demographic events of our era. In tandem with the shift in age, the US is becoming more diverse. Advancing age is the most well-known risk factor for Alzheimer’s disease and related dementias (ADRD). The South Carolina ADRD Registry is currently one of only three population-based registries in the Nation; it provides a unique opportunity to better understand ADRD with data compiled from a range of sources on a racially/ethnically diverse sample of South Carolina residents with ADRD. An analysis of 2013 Registry data showed that Whites were significantly older at the time of ADRD diagnosis that either Hispanics or African Americans (3 and 3.5 years older, respectively) and were also older at the time of death (3 and 1.5 years older, respectively). In addition, African Americans and Hispanics with ADRD were significantly more likely than their White counterparts to live in the community (73% vs. 39%, respectively) and have vascular dementia (OR: 1.9 vs. 1.51). Understanding racial and ethnic differences in ADRD can better inform planning for social and health-related services for the growing and increasingly diverse aging population of South Carolina. Presentation for the SCTR Scientific Retreat on Aging Related Research October 20, 2017

Graduate Research Assistant Associate Director for Research Gelareh Rahimi Graduate Research Assistant Mindi Spencer, PhD Associate Director for Research

Acknowledgements SC Department of Health and Human Services Lieutenant Governor's Office on Aging SC Department of Mental Health USC School of Medicine SC Public Employee Benefit Authority Revenue and Fiscal Affairs Office, Health and Demographic Section SC Department of Health and Environmental Control, Vital Records and Public Health Statistics Arnold School of Public Health at USC

Presentation Outline South Carolina Alzheimer’s Disease Registry Background History and goals Data collection procedures Racial and ethnic differences Strengths of the Registry Future directions

Background In the United States In South Carolina 5.4 million people are currently living with Alzheimer’s disease (AD) By 2050, the number of people age 65+ with AD will triple to a projected 13.8 million In South Carolina The percentage of those 65 years and older was estimated to be 16.2% of the total population in 2015 By 2029, it is estimated that 1.1 million residents (1 in 5) will be over age 65 Sources: US Census Bureau and Alzheimer’s Association

Registry History The SC Alzheimer's Disease Registry was founded in 1988 Includes data about individuals with Alzheimer's disease and related dementias (ADRD) One of only three population-based state AD registries in the nation The SC AD registry has been called a central information repository that collects information about individuals with Alzheimer’s disease and related disorders in SC. ADRD is defined as “Alzheimer's disease or related disorders.” The term “related disorders” refers to dementias associated with vascular disease, mixed dementia and with other medical conditions such as Parkinson’s disease. We are 1 of only 3 population-based state registries in the US. We are the oldest registry, founded in 1988, and we are the most comprehensive. Other registries, are located in West Virginia and began collecting data in May 2008, and Georgia, which is a new registry, that began collecting data in 2014. (A registry did exist in New York but it stopped collecting data in 2007) One of the quality’s that makes our registry unique is it’s legislation. Authorized/established by state law in 1990 Grants permission for Registry to contact cases and caregivers Addresses use and protection of confidential data In 1990, the Governor signed a state law authorizing the establishment of a voluntary Statewide Alzheimer's Disease Registry. The law has strict confidentiality requirements but does allow Registry staff to contact the families and physicians of persons diagnosed with ADRD to collect more in depth data than what is captured in the registry such as information related to the progression and treatment of the disease, service utilization, and caregiver characteristics. (Called a follow-back study)

Registry Goals Maintain the most comprehensive state registry of ADRD in the nation Provide disease prevalence estimates to enable better planning for social and medical services Identify differences among groups Help caregivers for individuals with ADRD Foster ADRD research

Data Sources *Duplicates occur because individuals often use more than one name, social security number, or other identifying information when using health or social services.

Identifying Registry Cases Classification of ADRD by ICD-9-CM Codes Alzheimer’s disease (AD) Vascular dementia Mixed dementia (AD + Vascular dementia) Dementia in other medical conditions e.g., alcohol/drug-induced dementia, Parkinson’s disease, dementia with Lewy bodies conditions (e.g., HIV) + a dementia code

Information in the Registry Diagnosis (ADRD type and other chronic conditions) Sociodemographic Information Age Gender Race Location Facility Community Unknown Contact information for caregiver (if available)

2017 Annual Report Summary 91,741 individuals were living with ADRD in 2013 Based on the Registry and US Census estimates: 11% of South Carolinians age 65+ had ADRD 44% of South Carolinians age 85+ had ADRD 63% of South Carolinians with ADRD were women

ADRD Prevalence by County ADRD Prevalence for Individuals 50+, 2013 Prevalence per 100 2.5%-3.5% 3.5%-4.5% 4.5%-5.5% 5.5%-6.5% 6.5%-7.5% .

Type of ADRD 60% had a diagnosis of AD 68% with AD were women 32% with AD were men 11% had a diagnosis of vascular dementia 4% of all cases were in the Mixed category 25% had dementia related to other medical conditions 7% Parkinson’s disease 10% Lewy Bodies 31% some other medical condition

Age (in years, percent total)

Registry Cases Place of Residence

Registry Cases by Age Group and Place of Residence % Individuals

Racial and Ethnic Differences African Americans… Were at higher risk of an AD diagnosis than non-Hispanic Whites Accounted for 20% of South Carolinians age 65 years and older Represented 28% of Registry cases

Racial and Ethnic Differences by Age at Onset Compared with Whites… African Americans were on average 3.5 years younger at the time of AD onset Hispanics were on average 3 years younger at the time of ADRD onset

Racial and Ethnic Differences by Place of Residence Whites with ADRD had… 27% lower odds of being cared for in the community than African Americans with ADRD 61% lower odds of being cared for in the community than Hispanics with ADRD (n=55,689)

Racial and Ethnic Differences by Type of Dementia Compared with Whites… African Americans had almost 2 times the odds of having vascular dementia versus AD Hispanics had 51% greater odds of having vascular dementia versus AD

Strengths of the Registry Statewide population-based registry Multiple data sources with a history of validity checks Diagnosis by physicians of all specialties Commitment of multiple stakeholders from across the state

Future Directions Current efforts to create “Registry V 2.0” Addition of new data Creation of cohorts for research Contact information of caregivers Opportunities for collaboration Limitless! Updated data request procedure (see website)

Questions and Discussion