“My loved one is in stage three.” “She’s at stage five.”
You may have heard numbers like these. But here’s the twist. There’s more than one staging system, and the same number can mean two very different things.
Careblazer, “What are the stages of dementia?” sounds like a simple question. It has a complicated answer. So let’s walk through what I wish more caregivers knew about the stages of dementia: what they mean, how they’re measured, and what they don’t always tell you.
Why Are There Different Stages of Dementia?
Different people use different staging systems. The three you’ll hear most:
- The three-stage model. Mild, moderate or severe. Sometimes people say early, middle or late. It’s very simple, and it’s my favorite.
- The Global Deterioration Scale (GDS). This describes how thinking changes across seven stages.
- The FAST scale, the Functional Assessment Staging Tool. This tracks how daily functioning declines over time.
It’s kind of like someone telling you it’s 70 degrees outside, without telling you whether they mean Fahrenheit or Celsius. Those are two very different things.
When somebody says their loved one is at stage three, that can mean two very different things depending on whether they’re using the three-stage model or the GDS. The number only makes sense when you know the system behind it. So if someone says, “Oh, she’s at stage five,” the truth is we have no idea what that means until we know which system they’re using.
If you want to see what a seven-stage model looks like, I go through each of the seven stages in stages of dementia.
Stages Aren’t Exact: Why Dementia Doesn’t Move in a Straight Line
Here’s another thing that’s really important to understand. The stages aren’t rigid or exact.
They’re based on the symptoms and behaviors we observe in our loved ones. And as you know, those symptoms can shift from day to day. Your loved one might be calm and communicative one day, and totally disoriented the next. That’s not unusual.
Dementia often doesn’t move in a straight line. Sometimes it’s all over the place. That’s why it can be so hard to figure out which stage someone is in.
How Long Does Each Stage of Dementia Last?
Not every person with the same dementia spends the same amount of time in each stage. Some people move through the stages very quickly. Some move through them very slowly. And no one spends the same amount of time in every stage.
It really depends on the other conditions that person might have. Two people, same diagnosis, same age. One can progress much quicker than the other.
Sometimes family members want to know the stage because what they really want to know is, “How much time does my loved one have?”
We don’t know. Based on their stage, we can make a guess. But that’s all it is. A guess.
The Three Stages of Dementia: Mild, Moderate and Severe
Let’s talk about how these stages might look. I’ll use the three-stage model, because it’s the simplest and the easiest to picture.
Early Stage (Mild Dementia)
In the early or mild stage, the person seems pretty independent. To most observers, they’re doing okay. That’s what makes it so tough to even identify people in this stage, and most people don’t get a diagnosis until they’re further along, in the middle stages.
You might notice they seem a little less interested in the hobbies and activities they’ve always enjoyed. Maybe they withdraw a little more. It’s easy to think their interests are just changing, or they’re more tired, or they’re under some stress. To a lot of people, they seem totally fine. Nothing obvious is wrong.
This stage is really hard for you, the main caregiver. To the outside observer, your loved one really does seem fine. But you’re with them, often 24/7, and you notice a lot of the changes.
This stage can also require a lot of supervision, because many people keep their physical abilities. They’re able to get to the car and drive away. They’re able to get on the computer, manage their finances… and wire that money to the scam. If that’s a worry for you, I cover practical safeguards in how to protect your loved one with dementia from scams.
All of that creates a lot of problems and a lot of stress for the main caregiver, while people on the outside are thinking, “What’s the big deal? They seem totally fine.” Maybe they think you’re exaggerating or being dramatic. That’s particularly frustrating in this stage.
When family insists your loved one seems fine, I go through why that happens in when family doesn’t believe your loved one has dementia.
Tools like GPS trackers, pill organizers and simpler routines can really help keep your loved one safe. But the emotional load is still there, and it’s often invisible to most other people.
Middle Stage (Moderate Dementia)
Once we get into the moderate stage, the signs become more obvious to everybody. This is where we start to notice a lot of behaviors:
- wandering
- paranoia
- believing things that aren’t true
- resisting help when they need it
They might start to need more help with physical tasks like dressing, bathing, managing medications and cooking.
This is probably the most exhausting stage. You’re trying to manage routines, stay connected with them and maintain their dignity, often while trying to keep your own life going. Maybe you’re caring for young children too, or holding on to friendships and other relationships. It can feel impossible.
This is the stage where support is so critical. Emotional support for you, and real, hands-on support. Sometimes that’s hands-on help for your loved one. And if your loved one is really against having somebody in the house to help with their care, the help might come in the form of someone cleaning your house, cooking meals, running errands or doing some of the handy work around the house.
Tools that can help here are things that make the home safer, like door alarms if your loved one is wandering, or labels around the home. These can help your loved one keep some independence in a safe way. This is also a good time to consider respite care, like an adult day program or people coming into the home to relieve you of some caregiving duties.
Late Stage (Severe Dementia)
In the final stage, the late or severe stage, communication often becomes really limited. Your loved one might not understand much of what you’re saying, or be able to speak much.
They start to show problems with physical abilities. Maybe trouble swallowing, walking or using the toilet. In the very late stages, they might have trouble even holding their head up. The brain and the body are showing significant decline.
This stage is really about patience: making sure they’re as comfortable as possible, keeping them safe, and being present with them.
Why It’s Hard to Tell What Stage Your Loved One Is In
If you’ve ever wondered, “What stage are we in?”, it’s really not always clear.
- They might show signs from more than one stage.
- The number might not match what you see.
- Things might move quicker than you expect, or slower.
It’s different for everybody, because we’re often dealing with people who have more than just dementia. Their other conditions play a role too.
I wish I could make this sound super simple and clear. I could, but it wouldn’t be accurate. So if you’re confused about what stage your loved one is in, this is probably part of the reason it feels that way.
If you’d like to look at the GDS and FAST scales yourself, you can find them easily online and use them to get a sense of where your loved one might be.
Every Stage of Dementia Comes With Its Own Challenges
The disease keeps changing, which means we’re constantly having to change and adapt how we respond. Every stage comes with its own grief, too, as the person goes through those changes. It’s hard for everybody.
So whatever stage your loved one is in, finding your support matters.
Inside the Care Collective, we talk through the changes of every stage together: what’s happening, how to respond as things shift, and how to take care of yourself while you do it. You can learn more here.
