Humans love order. As a way to make sense on our world, we want to categorize and put things into neat little boxes. Especially when we are hit with big, life changing events. Such as a diagnosis of Alzheimer’s Disease. So it is no wonder in order to help ourselves come to terms with it, make sense of it, or try and grasp onto some sense of perceived control, we want to stage it. So here is a quick run-down of the five stages of Alzheimer’s disease.
These stages are unique to Alzheimer’s Disease so they will not be very helpful to understand the disease process of Parkinson’s or Lewy Body’s.
Stage One: Preclinical Stage
At this point, you’re not even showing any symptoms. Life is going around normal, but you are starting to have changes in your brain, even if they’re not showing up in your everyday life. There are plaques or tangles, protein deposits, they call it Amyloid Beta, that build up in your brain in Alzheimer’s disease. That’s what impacts your memory and creates those gaps in the brain, so things don’t connect and work as well anymore. This is the stage where the plaques are developing. This can go on for years without showing any symptoms. But the good thing is, even at this stage, they’re starting to have tests that can start diagnosing (especially if you have a strong family history) so that you might have a better idea of how to plan for the future. Being able to start testing and diagnosing this early helps create new treatments for the future which is super exciting. But in the Preclinical Stage, you’re going around as if nothing’s happening, you’re not seeing any changes in your relationships or your abilities or everyday life or even in your memory.
Stage Two: Mild Cognitive Impairment due to Alzheimer’s Disease.
That title is a mouthful. Cognitive Impairment can have several different causes so they want to make sure you know where it is coming from in this case. One of the important things to know, in talking with your doctor, is to figure out what is causing the symptoms you are experiencing. Just because you have Mild Cognitive Impairment (MCI), doesn’t mean you have Alzheimer’s disease. It just means you have mild changes in your memory and thinking ability. At this point, it’s not enough to start impacting your daily life, or your relationships yet. It might cause memory lapses. It usually shows up with information that’s kind of easy to remember, like conversations, recent events, appointments are a big one. So if someone starts forgetting appointments, that could indicate MCI. Showing signs of MCI does not mean that the person has Alzheimer’s disease, that’s where other tests have to come in. It just means that you’re having some memory or cognitive issues going on that could be due to other things. That’s why part of the diagnosis process is to rule out other causes such as depression or a B12 deficiency. These issues are relatively easy to manage and can be taken care of quickly. Not everyone with MCI has Alzheimer’s disease. That’s where these preclinical tests can be really helpful to determine whether or not these cognitive impairments that you or your loved ones’ experiencing is due to Alzheimer’s disease, or something else.
Stage Three: Mild Dementia Stage
In the Mild Dementia stage, this is the time or the stage that most people, if they have Alzheimer’s disease are diagnosed. It is in this stage that the symptoms, the dementia symptoms, become so intrusive into their life, that it’s beginning to affect relationships and activities of daily living. Everyday tasks might not be impacted, but it might be memory loss of recent events, asking questions over and over again, that’s a huge one that I am asked about, “Why does mom keep asking me the same question over and over? I told her.” It’s because her brain can literally not hold on to the information anymore. That’s completely normal. Difficulty with problem solving and sequence tasks become more difficult. You will often see mistakes in finances at this time. Monitoring and keeping up with your checkbook, making sure that you remember to pay your bills. Oftentimes, I hear family members might think their loved one is doing well until they start getting calls that they haven’t paid their power bill in months, or they’ve paid it three times over for the month. If your loved one has always able to pay the bills or manage the finances but now is suddenly having problems, that is a red flag that something has changed and need looking into.
At this point, you might also notice changes in personality. Your loved one might become more withdrawn, irritable and angry, or have decreased motivation to do tasks that they used to do. This is a common time that folks who are diagnosed start to show symptoms of depression and might be diagnosed with depression. If you think about it, it makes complete sense. They are aware of what’s going on. They see all these deficits, losses, changes and tasks they can’t do anymore. What a huge loss to have to deal with and scary. Because everyday tasks become more difficult and unfamiliar, you withdraw. You don’t want to try and do these things you used to be able to do because what if you can’t do them anymore? How embarrassing and frustrating. This is a time to get support for you and your loved one to work through the loss and transition. This is a big change, they still know what’s going on and the losses that are happening, which are devastating.
Stage Four: Moderate Dementia
At this point, people are growing even more confused. This is where daily activities start to be impacted by the disease. They are going to be showing increased poor judgment and confusion. Sequencing of tasks gets to be really difficult. At this point, if you tell your partner they need to go brush her teeth, some days they might be able to brush their teeth no problem. The next day they might be standing in the bathroom not understanding what you are talking about. This is a huge frustration point for a lot of care partners because how long have we been brushing our teeth? It’s on autopilot for most of us. But if you break down as simple tasks that we’re used to doing every day, without even thinking on autopilot, it becomes really confusing. There’s a lot of sequencing involved with brushing your teeth that we usually don’t have to think about. That’s where the brain starts to get jumbled up and has difficulty putting tasks in the correct order. So we freeze. And then we don’t do it because we don’t want to look stupid. They might lose track of where they are, what day it is, even what season at this time too. Sometimes folks have difficulty dressing appropriately for the current season. They might be wearing lots of layers when it’s really hot outside. Or they might not wear enough layers because they think it’s warmer.
This is also a time where wandering might become an issue. This is the point, in the progression of the disease, where you might need to determine whether or not they’re safe to be home by themselves. They probably need 24 hour care, especially if they have difficulty completing activities of daily living or are a wander risk.
This is also a time where wandering might become an issue. This is the point, in the progression of the disease, where you might need to determine whether or not they’re safe to be home by themselves. They probably need 24 hour care, especially if they have difficulty completing activities of daily living or are a wander risk. This is the time that they need 24 hour care, what ever that looks like for your family, where ever they are going to be the safest.
Stage Five: Severe Alzheimer’s Disease
This is the last stage of Alzheimer’s disease, and at this point, people are completely dependent. This is really difficult to see. At this point, a lot of their basic functioning starts shutting down and they forget how to do basic tasks. They can’t feed themselves anymore. Communication is really difficult. They might have word salad, or just kind of garbled words that are difficult to understand. Interestingly they might still be able to sing, because singing is a different part of our brain than speaking. Sometimes singing familiar songs can connect with people and they might sing along, but a lot of the times it is automatic. They are not able to speak or communicate in ways that make sense, even if every now and again, they come out with a clear word. This is an important time where you are looking at nonverbal communication to see, are they comfortable? Are they in pain? If behaviors are changing, those are some of the first things you’re going to look at because they can’t tell you verbally that something’s going on. They are going to need daily assistance, total care with dressing, bathing. They are going to have a physical decline. More difficult walking or getting around and they may get contractions in joints.
Well now what?
So those are the stages. And despite our love of timelines and staging things, it is important to remember, not everyone’s timeline is the same. It varies greatly between the individual. Rate of progression is different for everybody. You can be in the preclinical stage for years. Some people stay in the mild to moderate stages for years. Some people live 20 years after diagnosis because on the whole, they’re pretty healthy. They’re up walking, they’re doing stuff. They don’t have a lot of other physical comorbidity going on. As long as they are safe and taken care of, they can live quite a while. Some people’s disease progress super fast, and they might pass on five years or so after diagnosis. It really is different for everybody.
I hope you found this run down helpful and know have a better understanding of the progression of Alzheimer’s disease, but don’t live by it. It does not really matter what stage your loved one is in, what matters is your support and accepting how they show up each day. Want an easy reference guide? Click the button below to receive my free quick reference to the 5 stages of Alzheimer’s disease.
Be kind to yourself.