What Is Alzheimer's Disease?
Alzheimer’s is a specific disease of the brain that was identified more than 100 years ago, but research into its causes, risk factors and potential treatments has gained momentum only in the last 30 years. The hallmarks of Alzheimer’s disease are the accumulation of abnormal proteins in the brain: clumps of beta-amyloid (called amyloid plaques) and tangled bundles of tau fibers (called neurofibrillary tangles). Most experts now agree that the accumulation of plaques and tangles in the brain may begin 20 or more years before the symptoms of dementia appear.
Dementia is a term used to designate brain diseases that progressively and permanently undermine cognitive function and behavior to the point where the individual is no longer able to carry out customary activities at work or at home. Alzheimer’s disease is one of many dementias. It happens to be the most common dementia seen in old age. It is an irreversible, progressive brain disease. It slowly destroys brain function and leads to dementia. It is characterized by cognitive decline (e.g., memory loss, confusion and poor reasoning); behavioral and psychiatric disorders (e.g., depression, delusions, agitation); and declines in functional status (e.g., ability to perform activities of daily living and self-care).
What Are the Symptoms?
The first symptom of Alzheimer’s disease is often memory impairment. As the disease progresses, memory continues to decline and other functions, like language skills and decision-making, become more difficult. Personality and behavior changes also may occur. A person with the disease may no longer recognize family and friends.
Eventually, the person who survives with Alzheimer’s disease is completely reliant on others for assistance with the most basic activities of daily living, such as eating. In more than 90 percent of people with Alzheimer’s disease, symptoms do not appear until after age 60 and the incidence of the disease increases with age.
However, there are other types of dementia caused by other diseases and conditions in the brain, such as frontotemporal, Lewy Body and vascular dementias. Some of these, such as frontotemporal, start at a much younger age when a person is in their 50s and early 60s, and can impair language or behavior, while leaving memory intact. Distinguishing between Alzheimer’s disease and other dementias, in terms of clinical presentation and diagnosis, may be challenging and may require extensive testing in specialized centers. Researchers now recognize that many of these diseases and conditions can co-occur in the brain and work together to influence the onset of dementia. The term “Alzheimer’s disease and related dementias” often are used to refer to Alzheimer’s disease and related neurodegenerative disorders.
What May Prevent or Delay the Onset of Alzheimer's Disease?
Many current studies are investigating the benefits of exercise, diet and other lifestyle modification that may prevent or delay the onset of Alzheimer’s disease. The causes of Alzheimer’s disease are not completely understood, but researchers believe they include a combination of genetic, environmental and lifestyle factors. The importance of any one of these factors in increasing or decreasing the risk of developing Alzheimer’s disease may differ from person-to-person. In rare cases, known as early or younger-onset Alzheimer’s disease, people develop symptoms in their 30s, 40s or 50s.
ILBrainHealth.org: A One-Stop-Shop for Alzheimer's Disease Education & Resources in Illinois
The Illinois Department of Public Health and Rush University Medical Center partnered to create a website housed under The Illinois Cognitive Resources Network. The website educates Illinoisans about the symptoms & early warning signs of Alzheimer's Disease and Related Dementias, and increases awareness of culturally relevant resources that are available in local Illinois communities. This online system aims to address some of the lessons learned during Lieutenant Governor Juliana Stratton & The Alzheimer's Association IL Chapter's 2019 Listening Tour. They found that many individuals, caregivers, and families living with Dementia feel alone on the journey, especially those in underserved and underrepresented communities.
Personal and Economic Impact of Alzheimer's Disease
In 2010, there were 210,000 persons with Alzheimer’s disease living in Illinois. This figure is projected to reach 240,000 in 2025, a 14 percent increase. If all of the persons with Alzheimer’s disease in Illinois lived in one city, it would be the state’s second largest city. Alzheimer’s is not a disease that limits itself to a particular race, marital status, country of origin, religion or sexual preference.
Nationally, the cost of caring for those with Alzheimer’s and other dementias is estimated to total $203 billion in 2013, increasing to $1.2 trillion (in today’s dollars) by mid-century. Medicare and Medicaid cover about 70 percent of the costs of care. This dramatic rise includes a 500 percent increase in combined Medicare and Medicaid spending.
To put in to perspective the personal and economic impact of Alzheimer’s disease and related dementias on persons with the disease, their families and caregivers, and state and federal governments, statistics about Alzheimer’s disease and related dementias are presented in this state plan. A much more extensive compilation of facts and figures is published by the Alzheimer’s Association every year at www.alz.org.
Illinois Alzheimer Disease Program
Alzheimer Disease Assistance Act
The Alzheimer’s Disease Assistance Act (410 ILCS 405) required that by January 1, 1987, and every three years thereafter, the Illinois Department of Public Health (Department) prepare an Illinois Alzheimer's Disease Assistance Plan in consultation with the Illinois Alzheimer’s Disease Advisory Committee (ADAC) to guide research, diagnosis, referral and treatment services within each service area described by the Department; provide oversight of three Regional Alzheimer’s Disease Assistance Centers (AD Centers), including their primary provider sites (PPS); and coordinate Alzheimer’s Disease Research Fund (ADRF) grants.
Alzheimer Disease Advisory Committee
The Alzheimer's Disease Advisory Committee (ADAC) was established through the Alzheimer’s Disease Assistance Act and consists of 17 voting members and five nonvoting members appointed by the director of the Illinois Department of Public Health. The directors of the following state agencies, or their designees, serve as nonvoting members: Department on Aging, Department of Healthcare and Family Services, Department of Public Health, Department of Human Services and Guardianship and Advocacy Commission.
The ADAC reviews programs and services provided by state agencies directed toward persons with Alzheimer's disease and related dementias, and, by consensus, recommend changes to improve the state's response. ADAC’s recommendations are reflected throughout this state plan.
Regional Alzheimer's Disease Assistance Centers
A regional Alzheimer's disease assistance center (ADA center) is considered the top tier of dementia care providing diagnostic evaluation, treatment, referral and research. An ADA center must be a postsecondary higher educational institution having a medical school affiliated with a medical center and having a National Institutes of Health and National Institutes on Aging sponsored Alzheimer's Disease Core Center. Any regional ADA center that previously was designated as having a National Alzheimer's Disease Core Center but no longer carries such designation can continue to serve as a regional ADA center. ADA centers are staffed by a network of physicians, medical specialists, social workers, educational specialists and research scientists with expertise in dementia care and research.
Alzheimer’s Disease Assistance Centers, funded by the Department of Healthcare and Family Services, in Illinois are:
- Northwestern Alzheimer’s Disease Assistance Center for Northern Illinois, Northwestern University Feinberg School of Medicine, Chicago
- Rush Alzheimer’s Disease Assistance Center for Northern Illinois, Rush University Medical Center, Chicago
- Southern Illinois University, School of Medicine, Center for Alzheimer's Disease and Related Disorders, Springfield
Alzheimer Disease Research Fund
The Alzheimer’s Disease Research Fund (ADRF) was supported by Illinois taxpayers’ contributions through annual state income tax return. This fund, was in existence from 1985-2020. Grant awards were used to investigate the biomedical, technical or psychosocial study pertaining to Alzheimer’s disease and related disorders. Topics included, but are not limited to: epidemiology, etiology, pathology, diagnosis, care, treatment, evaluation, cure, social or economic impacts, gerontology, nursing, psychology, respite care, in-home care, long-term care, health care finance and psychosocial issues. Grant awards were available only to Illinois researchers.
These basic core competencies were developed by the Illinois Department of Public Health, the Alzheimer’s Disease Advisory Committee, and Illinois partners to serve as a “minimum set of core competencies for individuals that directly work with or interact with persons living with dementia (PLWD) and their care partners.” Some professions may expand on this set and define additional competencies. This effort began in 2015 as part of the Healthy Brain Initiative, providing the foundation for future trainings that will build skills for both professionals and lay persons to work more effectively with PLWD and their care partners. The development of these core competencies and trainings for providers and care partners will enhance the care and quality of life for PLWD across the state and empower the workforce to become more dementia capable.
Laws & Rules
- Alzheimer’s Disease - IL State Plan 2020 - 2023
- Alzheimer’s Disease - IL State Plan 2017 - 2020
- Alzheimer’s Disease - IL State Plan 2014 - 2017
- Core Competencies for Providing Care to People Living with Dementia
- Chronic Disease Burden Update - Caregivers
- Burden Update - Healthy Brain Initiative
- Burden Update - Cognitive Impairment