Date: February 1st, 2013
Alzheimer's disease is a slow, dehumanizing, and fatal disease that strikes 1 in 8 people over the age of 65. While it's typically thought of as a disease that affects memory, it goes well beyond memory loss and eventually leads to death.
The disease progresses gradually as abnormal proteins—called plaques and tangles—accumulate in the brain and kill healthy cells. It starts out in the part of the brain where memories are formed, which is often the time when an individual seeks help and why we think of Alzheimer’s as a memory disease. But over time, the plaques and tangles destroy more and more brain cells and make it hard to remember even simple things. They then spread to other parts of the brain—compromising function wherever they go and causing the different stages of the disease. At some point it gets hard to find the right words, then to use logic and problem solving skills. Next the person starts to lose control of their feelings and even begins to experience altered reality and hallucinations. Eventually the disease destroys even the oldest and dearest of memories.
Once the plaques and tangles start to compromise balance and coordination, it’s only a matter of time before the brain is unable to regulate breathing and the heart, leading to death. As Augusta D—the first patient ever diagnosed with Alzheimer’s disease—said in a passage of her diary, the patient “loses themselves” as they slowly pass away.
An Urgent Epidemic
Alzheimer’s disease impacts people from every walk of life and knows no cultural or social boundaries. The main risk factor is age and nearly half of Americans over the age of 85 have the disease.
The burden of the disease on the individual is obvious, but it also goes well beyond to the family members and caregivers. Family members care for the vast majority of Alzheimer’s and dementia patients and often do so without compensation and in addition to their full-time jobs. In 2008, close to 10 million Americans provided 8.5 billion hours of unpaid care for a family member, friend or neighbor with Alzheimer’s disease or another dementia.
And the disease is not just a personal and family tragedy. It’s becoming a social catastrophe. We now have more than 5 million Americans with the disease and as our population continues to age, that number is expected to grow by almost 300%--reaching 16 million by 2050.
With its tremendous costs, Alzheimer’s threatens to bankrupt our healthcare system and cripple our economy. Direct and indirect costs of the disease and other dementias amount to more than $200 billion a year. And that number is projected to balloon to more than $600 billion by 2050. On top of this, the U.S. economy loses more than $210 billion each year in costs to businesses and lost productivity.
The good news is that scientists understand more than ever about how the disease works and what they can do to stop it.
The Search for a Cure
The bad news is that there is currently no cure for Alzheimer’s disease, nor are they any treatments that can slow the progression of the disease. There are a handful of drugs that have been approved by the U.S. Food and Drug Administration that help treat the symptoms and can provide patients with comfort, dignity, and independence for a longer period of time.
But it doesn’t take personal experience with this disease to know that that’s not enough. And unfortunately the pace of Alzheimer’s disease research is alarmingly slow. The search for perfect science too often gets in the way, patients are not routinely a part of the process, and risk-benefit is defined in government terms instead of in ways that benefit the patient.
Alzheimer’s disease also lacks a champion for change. Because patients are often older and suffering from multiple chronic illnesses, they don’t make the ideal vocal advocates in the same way that cancer and AIDS survivors do. Alzheimer’s patients are too often overwhelmed by the burden of the disease and need other champions who will help deliver their message to policymakers and other key officials who can help change the way we look for a cure.
This is where the ACT-AD (Accelerate Cure and Treatments for Alzheimer’s Disease) Coalition comes in. More than 50 members, led by the Alliance for Aging Research, have come together to seek to get disease-modifying therapies (those that will slow, delay, or stop the disease) to patients as quickly as possible by speaking for those who cannot speak for themselves. The members of ACT-AD know that we can’t afford to let Alzheimer’s disease continue on its current course.
In addition to being an advocate for patients, ACT-AD also facilitates critical conversations and provides important resources. The ACT-AD website at www.act-ad.org was recently redesigned in order to provide better accessibility and searchability for advocates and consumers alike. We urge you to check out the new site, learn more about the disease, and learn what you can do to help. If you or a loved one is suffering from Alzheimer’s disease, there is also a great new resource list that can help you find more information and connect with other’s dealing with the disease. You should also check out these great pocket films on Alzheimer’s to learn more and help spread the word.