A person is most often defined as the sum of their experiences. Their history. You are your history; the actions you have done and the words you have said. Forgetting that history, losing yourself to the unending march of time, can feel like a loss of self. You mourn not only what was, but what could have been. The things you no longer have control over. This is part of what can make a disease such as Alzheimer’s so terrifying not only to those who have been diagnosed with the disease but also their loved ones.
It is a progressive loss of self.
In its earliest stages, Alzheimer’s may feel like a day where you skipped your necessary morning dose of caffeine. You may forget where you put your keys, or what you call the green, fuzzy, fruit with the black seeds (FYI - it’s a kiwi). These cognitive changes may affect your life to some extent, but you are still able to function independently. You still feel like you.
Over time, these cognitive changes will get worse. It is the moment where you think Monday is Friday and vice-versa, but near constant. In short, it is discombobulating. Basic tasks, like remembering to brush your teeth or driving to the grocery store, may become more challenging. Your life may change as you find that you need more help with these tasks. This can be difficult not only for anyone facing this loss of control, but also their loved ones. Who you are is changing.
These changes become progressively more pronounced with time. You may lose the ability to respond to your environment and may require around-the-clock care.
For the individual going through this progression, it can feel hopeless. The lack of control is often terrifying. For their loved ones, you may feel like you’re watching someone you love disappear. Their history feels like it is slipping away as they forget your shared experiences. One day, they are a child, another, entering middle-age. You may be a stranger or a familiar face they can’t quite place.
Alzheimer’s disease can feel incredibly isolating for all involved.
However, today more than 6 million Americans are living with Alzheimer’s disease. It is likely that you, or someone you know, has a loved one who has been, or will be, diagnosed with the disease. There are over 11 million unpaid caregivers, often family members, providing over 18 billion hours of care per year to those diagnosed with Alzheimer’s. For those facing a diagnosis as well as those providing care, you are not alone.
There are a variety of ways to get involved, support Alzheimer’s awareness and research efforts, as well as find support for yourself. First, you should always start by talking to your doctor. They can direct you to resources for support and evaluation. If you don’t have a primary care physician or would like to work with a specialist from the start, the below hospitals specialize in Alzheimer’s care and can aid with diagnosis, medication, and options for care:
An Alzheimer’s diagnosis also does not automatically mean that you will need to be sent to a care facility. The Illinois Department of Aging, Adult Day Services provides support for caregivers of individuals living with Alzheimer’s in an effort to allow them to remain in their community. In addition, The Dementia Friendly movement is working to change the way people think, act, and talk about dementia and increase community awareness. There are local chapters available across Illinois, and you can find a chapter near you by following the link here. These efforts are led by Illinois Cognitive Resources Network and RUSH Hospital.
The Alzheimer’s Association also has multiple avenues to support community awareness through their ambassador program and opportunities to volunteer with the organization in a variety of capacities. You can also get involved through events such as walks, bikes, and giving.
While these options provide a variety of ways to find support and community around you, we have yet to discover a cure for Alzheimer’s. There are some drugs available that may help prevent additional cognitive decline and additional drugs may be prescribed to treat the symptoms of Alzheimer’s, such as behavioral and psychological symptoms. You should discuss these options with your doctor if you are interested in pursuing medication to better control your Alzheimer’s.
The underlying cause of Alzheimer’s and potential treatment options continues to be studied across the globe. Some of the most promising research from the past year can be found below:
Coya Therapeutics has begun to explore drugs that target the inflammatory response caused by nerve damage as a result of Alzheimer’s. Their new drug, COYA 201, is designed to enhance the function of Treg cells in the body. This drug is the first-in-human trial.
Researchers at Rensselaer Polytechnic Institute in New York have found a new drug target that could slow the progression of Alzheimer's disease.
The link between sleep deprivation and Alzheimer’s is being further explored by researchers at the Washington University School of Medicine in St. Louis. They have completed a small proof-of-concept study that shows individuals prescribed sleeping pills experience a decrease in a protein that is thought to increase the risk of developing Alzheimer’s.
MIT has released new research that blocking the formation of a particular protein complex may reduce DNA damage, neural inflammation, and neuron loss.
While work continues to better understand the cause of Alzheimer’s and how it progresses, there are resources available to you and your loved ones to get involved with your community, as well as connect with others providing care and learning to live with an Alzheimer’s diagnosis. While you may not have control over how this disease progresses, you do have control over how you and your loved ones respond to an Alzheimer’s diagnosis and the choices you all make for your future care.