I was so confused, among about a million other emotions, when my mom first got diagnosed with Early-Onset Alzheimer’s. This was becasue of a few reasons:
- I thought Alzheimer’s was a disease that old people got? Wait, I think I watched a movie about this once…
- What is Early-Onset Alzheimer’s vs. Alzheimer’s? What’s dementia?
- Is this terminal? Are there treatments?
- How did she get this? We don’t even have a family history???
And also:
- Anticipatory grief will just confuse you and do weird things to your brain.
If I could give one piece of advice, put your phone down and stop Googling. You should especially stop Googling if it’s past 8pm and you’re in your room all alone. You will spiral. You will feel worse. And you will feel even more scared.
What you should do is read this post! I am going to outline what Early-Onset Alzheimer’s is, differentiate between Alzheimer’s and other dementia-related diseases, how people get Alzheimer’s, explain the broad range of symptoms and stages, and go over post-diagnosis action plans.
I want to preface this post by saying that perhaps the most frustrating part of the disease is all of the unknowns. Through your research, you will commonly run into disclaimers such as “doctors do not yet understand” or “we have yet to find an answer”. There is still SO much that we do not know about the disease which, yes, is terrifying. In this post, I hope to focus on what we DO know to provide a beginner level understanding of the illness.
What is Early-Onset Alzheimer’s?
Let’s start out with the basics: Early-Onset Alzheimer’s disease is a type of dementia that affects the memory, thinking and behavior of those under 65. The symptoms and disease progression can differ significantly from later-onset Alzheimer’s. It is a terminal illness and while there are no cures, there are medications that can help to slow the progression of the disease (pause- take a deep breath. I promise I will touch more on this towards the end of this post!).
You can go down a rabbit hole, like I did, by trying to understand the science behind the disease and honestly, I get it. We all want to understand things and how they happen, especially when they’re happening to the people we love the most. Let’s just cover the basics:
As people age, it’s common for two types of abnormal proteins to form in the brain—typically in small amounts that aren’t harmful. However in people with Alzheimer’s, these proteins build up in much greater quantities and follow a consistent pattern. They often begin in regions of the brain that are responsible for memory and then spread to other parts of the brain. We do not know what causes this to happen, we just know that it does. While the exact cause isn’t fully understood, many scientists believe these proteins interfere with communication between nerve cells and disrupt essential functions needed for cell survival. Over time, this damage leads to the breakdown and loss of nerve cells, resulting in memory decline, changes in personality, difficulty with everyday tasks, and other symptoms associated with Alzheimer’s disease.
In more digestible terms, Early-Onset Alzheimer’s Disease slowly deteriorates the brain resulting in the person’s body gradually forgetting how to function.
Within Early-Onset Alzheimer’s, there’s two forms of the disease:
- Common Early-Onset Alzheimer’s: This is the type that a majority of those with the disease have.
- Genetic (familial) Early-Onset Alzheimer’s: This type is rare with only a few hundred people that have genes that contribute to the disease. (More on this later on!)
Early Onset Alzheimer’s vs. Alzheimer’s vs. Dementia
You’ll hear the term “dementia” frequently when reading about Alzheimer’s and if you’re like me, it’s confusing. What’s the difference? Dementia is a general term for memory loss and other cognitive functions to the point of prohibiting otherwise basic everyday tasks. I like to think of dementia as an overarching umbrella term for many diseases including Alzheimer’s and Early-Onset Alzheimer’s. To summarize, Alzheimer’s and Early-Onset Alzheimer’s are forms of dementia. Alzheimer’s is the most common form of dementia with Alzheimer’s disease accounting for 60-80% of dementia cases.
There are other forms of dementia such as Vascular dementia, Lewy body dementia and Frontotemporal dementia. These are the most common, but there are other forms including mixed dementia, Parkinson’s dementia, Huntington’s disease, and rarer conditions like Creutzfeldt-Jakob disease. The symptoms of these diseases all differ so it is important to not lump all dementia diseases together.
But getting back to Early-Onset, I want to emphasize that this is a rare form- approximately only 5% of the 6.5 million people in the United States living with Alzheimer’s experience the early-onset form of the disease. I personally cringe when people simply describe Early-Onset Alzheimer’s as “Alzheimer’s in people under 65”. I feel like it discredits the uniquely painful experience of Early-Onset. Here’s some unique traits of Early-Onset:
- Those with Early-Onset typically don’t experience noticeable memory loss at the beginning—the symptom most commonly associated with the disease. Instead, their symptoms often start with visual difficulties (ex: narrowed field of vision, trouble judging depth, or difficulty recognizing faces) and language (ex: finding the right words during conversations).
- Because these early signs can be unclear or unexpected, individuals are sometimes misdiagnosed with psychiatric conditions, which can delay proper care and support.
- Early-Onset typically advances more rapidly than the more common late-onset form.
How Do People Get Alzheimer’s Disease?
I’m taking a deep breath before writing this because there is SO much misinformation that gets spread about the “cause” of Alzheimer’s disease. It’s so important for people to understand the difference between risk factors and causation. There are a number of risk factors that can contribute to an Alzheimer’s diagnosis, but there is no known cause. Going back to the scientific explanation of the disease, we know it partially begins with the buildup of harmful proteins in the brain which kills nerve cells over time, however we don’t yet know WHY this happens. We don’t know the full picture.
Speaking of risk factors, this is a sensitive topic for me because it feels cruel to imagine there was something my mom did or didn’t do that caused her to develop the disease. I do believe in the importance of understanding if we’re making lifestyle choices that may put us at a higher risk for Alzheimer’s development, however I tend to stray away from the belief that the disease is purely caused by environmental stressors.
ANYWAYS, let’s get into some of the known risk factors. I want to note that these are risk factors for Alzheimer’s (not exclusively Early-Onset):
- Age: This is the largest risk factor for developing the disease and simply means that as we age, we develop a higher risk for developing Alzheimer’s.
- Genetics: PLEASE do not rashly get a genetic test done. Really take the time to consider if & when genetic testing is right for you and your family. If it is something you’re interested in, consult with your doctor, your loved one’s neurologist, a genetic specialist, or you can speak to someone through the Alzheimer’s Association. Knowledge is power, but it’s important to have the tools to help process genetic testing results. There are two types of genes that we can inherit from our parents that can affect our chances of developing the disease-
- Familial (Deterministic) Genes: If passed down from parent to child, they would almost certainly develop the disease. This is RARE- less than 1% of cases are tied to familial genes.
- Risk Genes: These are more common than familial genes but do not always cause someone to develop the disease. Most risk genes only increase the risk of developing the disease.
- The most common risk gene is Apolipoprotein E (APOE for short because I don’t even know how to pronounce that). Certain forms of the APOE gene can increase a person’s likelihood of developing the disease by 4x. It certainly increases the likelihood, however not everyone that has the gene develops Alzheimer’s or any other dementia related diseases.
- Lifestyle habits: Some things you can do to stay healthy and decrease the risk of developing the disease include leading an active lifestyle, avoiding smoking and drinking, eating a balanced diet, and prioritizing quality sleep.
- Other medical conditions: There are many health conditions that increase the risk of developing Alzheimer’s including diabetes, strokes, TBIs, heart problems, high blood pressure & cholesterol, hearing loss, and depression. Management is key so it’s important to stay on top of these.
In cases of Early-Onset, individuals are younger and therefore less likely to have conditions like high blood pressure, high cholesterol, or other chronic illnesses that can affect brain health. Instead, genetics are thought to play a larger role in the development of the disease in people under 65.
There isn’t one singular definitive test that can confirm whether someone has Alzheimer’s disease or another form of dementia. Instead, neurologists make a diagnosis by combining multiple sources of information, such as a person’s medical history, neurological evaluations, and cognitive and functional testing. They may also use brain imaging techniques like MRI, CT, or PET scans, along with blood tests or cerebrospinal fluid analysis, to support an accurate diagnosis.
Symptoms & Stages
In all honesty, Alzheimer’s and Early-Onset symptoms and decline can look extremely different from person to person. It does not always manifest itself in clear, easy to pinpoint stages. There aren’t scans, biopsies, or lab tests to be run that will give a definitive answer on what stage of the disease your loved one is in. I know how frustrating it is to feel like you’re unable to get a clear answer on the timeline of decline. We’ll walk through what some of the most common symptoms are as well as what the different stages of the disease can look like.
Typically, symptoms will be noticed by family members first. Sometimes, those with the disease will find it hard to recognize the changes in their own behavior. Other times, they may recognize the changes but chalk it up to other, more easily explained health issues like lack of sleep, high stress levels, or a psychological issue. The most common early sign of Alzheimer’s is difficulty retaining newly learned information. While some changes in memory and thinking are a normal part of aging that most of us will experience eventually, significant memory loss, confusion, and other noticeable cognitive changes are not. Below are some other common early Alzheimer’s symptoms:
- Forgetting information shortly after reading/hearing it
- Having difficulty remembering the names of newly introduced people
- Struggling to find the right word or recall a specific name
- Misplacing or losing important or valuable belongings
- Changes in handwriting
- Difficulty with driving & recalling directions to familiar destinations
- Experiencing greater difficulty with planning, organizing, or managing responsibilities
- Finding everyday tasks in social or professional settings more challenging
Circling back to Early-Onset specifically, I mentioned earlier that many individuals do not initially experience the significant memory loss most commonly associated with the disease. Instead, symptoms often begin with changes in visual processing—such as a narrowed field of vision, difficulty judging depth, or trouble recognizing familiar faces—or with language challenges, including difficulty finding the right words during conversations. This can make it even more difficult to get an early diagnosis for Early-Onset. Early detection and diagnosis are CRUCIAL as they provide more treatment options that help manage and even slow down the severity of decline. Many clinical trials currently available only accept patients in beginning stages of decline, further emphasizing how important early detection is.
Let’s talk about the stages of Alzheimer’s and Early-Onset. In general terms, we categorize Alzheimer’s as early, middle, and late stages. Typically, early stage Alzheimer’s begins in the area of the brain that manages learning and is characterized by brief memory lapses while still maintaining a level of independence. During the middle stage, which is typically the longest, the disease spreads through the brain leading to other areas of impact and increasingly severe symptoms. Some of these include significant behavioral changes as well as deepening confusion about events, time and place. Late stage is defined by more serious memory loss and behavior changes including difficulty speaking, swallowing and walking. Many individuals cannot respond to their environment and require 24/7 care.
If we break that down even further and characterize stages based on behavioral decline, we can follow the Global Deterioration Scale or the GDS. The GDS consists of seven clinical stages with stages 1-3 being the pre-dementia stages and stages 4-7 being the dementia stages with stage 5 being when someone can no longer live unassisted. Severe dementia, stages 6-7, mark a complete loss of independence and are further broken down into sub-stages (a-f). I will say, these are great markers to give you an idea of where your loved one is at in terms of their stage of decline, however, all of these are purely behavioral based. As we know, Alzheimer’s is not always a clear, linear decline. Part of the frustration that I experienced is never having 100% certainty here. For example, your neurologist may tell you that your loved one is most likely in stage 3 of the disease, but maybe they’re actually in stage 4.
The main takeaway is that Alzheimer’s worsens over time. It progresses in stages, with the severity of symptoms growing over the years. If you’re like me, there’s a gnawing thought in the back of your head that you’re afraid to surface… How long can someone with Alzheimer’s or Early-Onset Alzheimer’s live for? I wish so badly that I could provide an answer to that question but the reality is, there isn’t one. Part of the difficulty here is that it’s often hard to know exactly how long a person has been living with the disease by the time they’re diagnosed. With my mom, we guess that she had been living with the disease for at least a few years before we got her diagnosis. The best answer I can provide is that on average, a person with Alzheimer’s lives four to eight years after diagnosis, BUT can live as long as 20 years, depending on a wide variety of factors. I am not going to bother telling you to not spiral over this because it’s inevitable. But try not to live in it. I plan to write more about what I call the “diagnosis spiral” which is where I found myself stuck for a long time.
Post Diagnosis Action Plan
And now the most frustrating part of the disease- there’s currently no cure for Alzheimer’s. While this is incredibly frustrating, I have faith that one day we’ll meet the first survivor of Alzheimer’s. Over the years, especially within the past few, we’ve had encouraging advances in research that give me hope. There have been multiple new treatments developed to help slow the progression of the disease. Two therapies, donanemab (Kisunla®) and lecanemab (Leqembi®), have been shown to slow cognitive and functional decline in individuals with early-stage Alzheimer’s. These therapies target and reduce the harmful protein buildups in the brain that I mentioned earlier. Additional medications and interventions may help manage symptoms, support daily functioning, and enhance quality of life for both those living with Alzheimer’s and their caregivers. I will say, some, if not all, of these medications have very significant side effects and will not be a good option for everyone.
With Alzheimer’s being the 6th leading cause of death in the US, researchers around the world are making Alzheimer’s research a top priority. Scientists continue to explore how the disease develops, progresses, and impacts the brain, leading to important discoveries about its underlying cause. This growing understanding is driving the development of new treatments aimed at slowing progression, delaying onset, and ultimately preventing the disease altogether.
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