Clinical trials are a form of medical research involving people instead of lab animals. They're the most effective way to evaluate how well a new medical intervention works. The scientists in any new medical breakthrough have to prove their treatment's safety and efficacy in laboratory tests before Food and Drug Administration (FDA) will approve a clinical trial.
On the last day of November and National Alzheimer's Disease Awareness Month, I'm going to squeeze in one more article about Azlheimer's disease, and talk about the importance of clinical trials in finding new treatments and possible cures for Alzheimer's disease.
Alzheimer's disease is fatal in 100 percent of cases, and there is currently no cure. While a lot of research has been done, and we know a whole lot more about the disease than we did 20 years ago, we're still missing the crucial piece: a cure for Alzheimer's Disease.
The Alzheimer's Association has the ambitious goal of no less than ending Alzheimer's. To further that goal, they sponsor dozens of studies and trials every year. Here's what the Alzheimer's Association has to say about clinical trials:
"Without clinical trials, there can be no better treatments, no prevention and no cure for Alzheimer's disease. Scientists work constantly to find enhanced ways to treat diseases, but improved treatments can never become a reality without testing in clinical trials with human volunteers."
Clinical trials are not merely shooting in the dark to find an effective treatment or cure. The FDA only approves a clinical trial to begin recruiting participants when the researchers have shown strong evidence that their new therapy will be at least as effective as the currently available treatments. The scientists also subject their new treatment to rigorous safety tests to make sure it is safe for trial on people.
Every clinical study, even if it fails, advances our knowledge of the disease, its causes, and future cure.
If you or your loved one has Alzheimer's disease, you may be leery about the idea of joining a clinical trial. You're concerned about undergoing treatment that might not work, and you're even more worried about possible side effects.
There are benefits and risks of participating in any clinical trial, and the known risks will be clearly spelled out in the trial's information packet.
Here are some benefits of participating in a clinical trial:
Clinical trials definitely do have risks associated with them. Here are some risks you should be aware of, brought to us by the National Institue on Aging:
If you're unsure about joining a specific Alzheimer's clinical trial, speak with your doctor for a full examination of the risks and benefits.
Hearing that your parent or loved one was diagnosed with Alzheimer's disease can be devastating. Maybe you've already lived through a loved one's battle with the disease, or maybe you've just read about its affects. You may have hundreds of questions and concerns about the illness and how it will affect your loved one's life. But if you have children, you need to think about them too.
Children and teens are observant, and they will notice that Grandma just isn't herself anymore. She'll suddenly and without warning get confused, maybe irrational, and sometimes even angry. This unpredictable and out-of-character behavior can be confusing and frightening for kids who don't know what's going on.
Talking to your children about their grandparent's disease may be tough, but it's a conversation you should have, especially if the sick person lives with you or you see them often. Here are some tips to help you talk to your kids about their grandparent's new reality.
To small children, "being sick" means having a cold or a fever. They can't understand how someone can look completely healthy and still be stick. For very young children, approximately ages 3 – 5, a simple explanation will work just fine. You can say something like "Grandpa is having trouble with his memory" and repeat as needed.
You may want to read some picture books about Alzheimer's disease, to jumpstart a conversation with your pre-schooler. Some excellent books are Striped Shirts and Flowered Pants: A Story About Alzheimer's Disease for Young Children by Barbara Schnurbush and What's Happening To Grandpa? By Maria Shriver
Older children can understand the concept of a brain disorder. Name the disease, and explain what it is in words they can understand. Children in elementary school already know the importance of the brain and memory. They can understand the following explanation: "Grandpa has Alzheimer's disease, which means his brain is sick. The disease is causing his brain to change and forget things. Sometimes these changes make him feel confused or angry. Sometimes he'll do things he doesn't say or mean. It's because of the disease. It's not your fault."
Teenagers might understand the phsyiological causes of Alzheimer's disease, but they may have a harder time accepting the changes in their loved ones. If their grandparent with Alzheimer's live with them, they may be embarrassed to have friends over. They may not want to be around their loved one with Alzhiemer's because it makes them feel uncomfortable. Don't force them to spend time with their ill grandparent. Encourage them to write down memories or collect trinkets from when their grandparent was healthy, to have and cherish forever.
Be open and honest. If it fits your family's communication style, you may want to call a family meeting and explain the changes your parent or loved one is going through. Do your research beforehand to answer any questions your children may have.
You don't need to mention the terminal nature of Alzheimer's unless your child asks. Once they ask, it's harmful to tell them everything will be okay, or that Grandma will recover. Admit to your child that nobody has ever survived Alzheimer's disease, and that Grandpa's condition will get a lot worse. Acknowledge their scared or sad feelings, and share some of your own feelings as well.
It's important to show your kids that they can still enjoy visits with their loved one. You can encourage them to do simple arts and crafts projects with their loved ones, look through photo albums, play music and sign, or read stories together.
A diagnosis of Alzheimer's disease can bring many challenges and changes to families, but leaving your kids' fears and questions unacknowledged doesn't have to be one of them. Talking about Alzheimer's disease to your children on their level and with honesty can help the entire family cope better with the disease.
November is National Alzheimer's Disease Awareness Month, as designated by President Ronald Reagan in 1983. President Reagan is actually the president most associated with the debilitating disease for another reason: he was diagnosed with it in 1994.
That November, at the age of 83, President Reagan announced he was one of the millions of Americans afflicted with Alzheimer's disease. His announcement brought Alzheimer's disease, the irrversible and progressive neurological disease, into the public spotlight.
Alzheimer's is the most common form of dementia—the progressive detioration of the brain. The general symptoms include loss of memory and other cognitive abilities. The effects of Alzheimer's are particularly severe, and always fatal. There is no cure for the disease.
The Alzheimer's Association, the leading organization pushing for a cure, says their vision is nothing less than a world without Alzheimer's. They support research and medical advancements against the disease. Thankds in part to their efforts, we know a lot about the mechanisms that contribute to the disease's development. It begins when two types of proteins—tangles and plaques—build up in the brain. Eventually, the disease kills off brain cells, robbing the person of first their memory, then their personality, and finally, their very selves.
We still don't know the direct causes of Alzheimer's, but we do know some of the possible risk factors. Your genes and lifestyle seem to be the biggest factors in whether or not you will develop Alzheimer's disease. While you can't do anything about your genes, you can make healthy lifestyle choices to reduce your risk as much as possible.
Implementing healthy habits as early as possible can help keep Alzheimer's at bay. Consider making the following changes in your lifestyle:
As one of the top providers of long-term senior care in New Jersey, we are experts in Alzheimer's disease and dementia care. We are committed to providing the best care possible for all our patients, even—or especially—for those who no longer recognize their loved ones or remember their own name.
We see the devastating effects of Alzheimer's disease every day, not only on the patient, but also on his or her family. In fact, the disease affects approximately 1 in every 2 families in the United States. That's a lot of people, and at Regency we're committed to raising awareness for Alzheimers. We do this by making sure our patients and their families always stay informed every step of the journey. And this month, we will also dedicate every article on this blog to a different facet of Alzheimer's disease.
We encourage you to share our posts to raise awareness during National Alzheimer's Disease Awareness Month
