This week our guest is Brenda L. Hyleman, director of the Office for Study of Aging, with the University of South Carolina Arnold School of Public Health. She will answer questions and discuss the Alzheimer’s Disease Registry of S.C.
What is the Alzheimer’s Disease Registry?
The Alzheimer’s Disease Registry is a comprehensive statewide registry of SC residents diagnosed with Alzheimer’s disease or related disorders (ADRD). As the nation’s most comprehensive registry of its kind, the Alzheimer’s Disease Registry has maintained a record of diagnosed cases of ADRD in the state since 1988. The Registry comprises multiple data sources, including client medical records from inpatient hospitalizations, mental health, Medicaid, emergency departments, memory clinics, chart abstracts, vital records, and long-term care evaluations.
What agencies are involved with the Registry?
The registry is maintained by the Arnold School of Public Health at the University of South Carolina, in cooperation with the S.C. Department of Health and Human Services, the SC Department of Mental Health, the USC School of Medicine, and the S.C. Office of Revenue and Fiscal Affairs, formerly the Office of Research and Statistics at the S.C. Budget and Control Board.
How long has the Alzheimer’s Disease Registry been in existence?
The registry was started in 1988, and became a state law in 1990 while Gov. Carol Campbell was in office.
What type of information is gathered?
The core data collected is age, type of dementia, gender, and race. ICD-9 (international classification of diseases 2009) data codes are recorded. Additional data sets on certain populations include educational status, caregiver contact, and marital status.
What are the types of dementia?
The registry includes Alzheimer’s disease, as well as related disorders, often referred to as ADRD. The types of related disorders include: Dementias associated with vascular disease; mixed dementia; and dementia in other medical conditions such as Parkinson’s disease, alcohol dementia, HIV/AIDS dementia, cerebral degenerations, dementia with Lewy Bodies, drug-induced dementia, Huntington’s disease and organic brain syndrome.
What are the goals of the Registry?
The goals of the Registry are to:
• Maintain the most comprehensive and accurate state registry of ADRD in the nation
• Provide disease prevalence estimates to enable better planning for social and medical services
• Identify differences in disease prevalence among demographic groups
• Help those who care for individuals with ADRD
• Foster research into risk factors for ADRD
The registry is voluntary and the law has very strict confidentiality requirements in place to protect individuals and families. Registry staff are allowed to contact the families and physicians of person diagnosed with Alzheimer’s disease or related disorders to collect relevant data and to provide information about public and private health care resources to them.
Currently only two other states have registries – New York and West Virginia. In May 2014 Georgia passed legislation to start a registry.
The chances of being diagnosed with ADRD increases with age. In South Carolina, 11.5 percent of those over 65 have ADRD and 42.7 percent over 85 have ADRD, according to a data comparison from 2004 to 2008. The rates vary notably by county.
Of the types of dementia, 62 percent of those on the registry have Alzheimer’s Disease, 15 percent have vascular dementia due to stroke and 24 percent have dementia related to another chronic condition. Sixty-four percent are women, 29 percent are African American and 42 percent of those with Alzheimer’s Disease are 85 or older.
Thirty percent live in an institution such as a nursing home or assisted living, 65 percent live at home with a caretaker and 5 percent are unknown.
Since Jan. 1, 1988, the registry has identified 199,279 cases of ADRD. There were 82,772 live individuals on Jan. 1, 2010. In 2008 there were 13,360 new cases added to the registry, a 7.5 percent increase from the previous year.
The greatest average increase occurred in the age group 50-64 which increased 10.5 percent. This group is considered the young age group and is expected to continue to rise. The 2013 Annual Report, released later this year on the 2011 data, will include the first group of Baby Boomers.
An annual report is released each year and provides an overview of the trends and information. The report is available of the OSA’s web site at osa.sph.sc.edu/alzheimers_registry.html.The 2013 Annual Report will include an updates and trends from the years 2008-2011.
What are some of the other medical conditions related to dementia?
Dementia with Lewy Bodies (LBD) is the second most common cause of dementia and accounts for about 20 percent of all dementia cases. LBD is a progressive brain disease characterized by abnormal round structures in the areas of the brain that controls thinking and movement. Individuals with LBD may have hallucinations and experience day-to-day changes in their symptoms. Other symptoms such as slowed movement, rigid muscles, and tremors are similar to those found in persons with Parkinson’s disease. )
A new area being followed is Chronic Traumatic Encephalopathy (CTE) which is an emerging dementia among professional athletics and others with head injuries.
Contact Brenda Hyleman at 803-777-0260 or send an email to firstname.lastname@example.org for more information.