About Alzheimer’s Disease
Alzheimer’s disease is a progressive and fatal neurodegenerative disorder manifested by cognitive deterioration, with resultant impact on many areas of function (e.g., memory, judgment, progressive impairment of activities of daily living, a variety of neuropsychiatric symptoms, behavioral disturbances). AD is a terminal and dehumanizing diagnosis affecting nearly 5.4 million US patients. To paraphrase from the diary of Augusta D., the first patient ever diagnosed with Alzheimer’s disease, the patient “loses themselves” as they slowly pass away.
Alzheimer’s disease impacts people from every walk of life. It knows no cultural or social boundaries. The main factor influencing who gets Alzheimer’s is age. One in eight people age 65 and older has Alzheimer’s disease.1 Nearly half of those over age 85 have the disease.2 Family members and caregivers are also impacted by the disease as they care for a vast majority of Alzheimer’s and dementia patients. It is currently estimated that more than five million people in the U.S. suffer from Alzheimer’s.3 Without a cure or effective treatments to delay the onset or progression of the disease, that number could more than triple to over 16 million people by 2050.4
The cost of caring for patients with Alzheimer’s disease is extraordinary. Direct and indirect costs of Alzheimer’s and other dementias amount to more than $200 billion per year.5 In 2008, Medicare spent $104 billion on beneficiaries with Alzheimer’s and other dementias.6 That number is projected to balloon to more than $600 billion by 2050.7 With 70 percent of Alzheimer’s patients being cared for at home by family members, the US economy loses more than $210 billion/year and U.S. business costs are $61 billion annually of which $36.5 billion results from lost productivity of employee caregivers.8
There is no cure for Alzheimer’s disease, nor are there any treatments that stop or slow the progression of the disease. Currently, five prescription drugs are approved by the U.S. Food and Drug Administration to treat people who have been diagnosed with AD. These drugs treat the symptoms of AD and can provide patients with comfort, dignity, and independence for a longer period of time and can encourage and assist their caregivers as well.
Many believe that Alzheimer’s disease is where AIDS and cancer were over a decade ago. For several years, AIDS and cancer patients were angered by the slow pace of drug approval. The more activists learned about the FDA’s drug approval policies, the more they became infuriated by drug trial guidelines mandated by the FDA and other scientific bodies. In their view, these guidelines, written in the interests of controlled, ”elegant” science, were actually leading to unnecessary deaths. The use of double-blind, placebo-controlled tests of potential AIDS and cancer drugs, in particular, were seen as a form of murder, especially by people with the diseases who learned before they died that they were members of the control groups given placebos.9
In reaction to the thoughtful arguments and actions these activists, government officials began to change the way the science was performed; patients have routinely become part of the testing process; risk-benefit has been redefined by these patients so that they have access as early as possible in trials to promising treatments. Now, AIDS and cancer patients have hope.
AIDS and certain types of cancer generally affect younger patients. These patients, their loved ones and other interested parties, pooled their energy and mental acuity to campaign for changes in how clinical trials were conducted. AD, however, affects older people, often suffering from multiple chronic illnesses and conditions as do their significant others. AD patients and their caregivers are less able to become vocal advocates. Elderly AD caregivers are also overwhelmed by burden of the disease. AD patients and caregivers need assistance delivering the messages demanding greater and more rapid access to promising treatments. ACT-AD will help deliver the messages to policymakers and other key officials.
Unlike cancer and HIV/AIDS, there are no Alzheimer’s disease survivors to champion the cause. ACT-AD seeks to get disease-modifying therapies to patients as quickly as possible by speaking for those who have been robbed of the ability to speak for themselves. Let this be the last generation that suffers without hope from the ravages of Alzheimer’s disease.
Although more than 10 years have passed, Alzheimer’s disease is still the least known, and recognized among these fatal diseases. National Institute of Health spent 480 million dollars for AD in 2012 while granting 6 billion, and 4 billion dollars each for research related to cancer and heart disease. Lack of enough hospitals or treatment centers, 10.9 unprofessional and unpaid caregivers are struggling to take care of AD patients. Considering AD caregivers face more hardships than caregivers for other diseases, it’s astonishing. As baby boomers started to turn 65, and death from AD is skyrocketing, there needs to be efforts to educate people and get more government attention than ever. 10
1. Alzheimer’s Association 2012, Alzheimer’s Disease Facts and Figures 2012
8. Alzheimer’s Association 2011, Alzheimer’s Disease Facts and Figures 2011
9. Goldberg, Jeffrey, Breakthrough, The New York Times Magazine, January 12, 1997 review of Impure Science AIDS, Activism, and the Politics of Knowledge, by Steven Epstein. 466 pp. Berkeley Press