The many stages of dementia

There are many different stages of dementia. Sometimes it feels as though you’ve reached the advanced stage, only to discover there are still smaller shifts and incremental changes within it. For us, it hasn’t felt like my dad stays in one stage for long; things seem to change often, sometimes subtly and sometimes suddenly.

Recently, he seems to have declined again. After losing some mobility following a fall, he eventually regained it for a while. But now he’s back in a wheelchair, and I’m not sure whether he’ll regain that mobility again. Last time, I thought he might never walk independently, and then he surprised us. This time, I don’t know what to expect.

I follow a lot of dementia-focused accounts on Instagram, and I often see people describing their loved ones as being in the advanced stage. What I’ve learned, though, is that “advanced” can look very different from person to person. Dementia is not a single, uniform experience, and families are often at different points along a very complex path.

It’s important for people to know that dementia is not always what the stereotypical images suggest. A quick image search tends to show only sadness, disconnection, and frailty, but there are many years – often many meaningful years – where life can still resemble what it was before diagnosis. With support, people can continue to work, travel, enjoy hobbies, and maintain independence. Understanding the broad range of stages can help counter the idea that dementia is immediately and entirely devastating.

But where we are now is a stage with very little freedom left for my dad. He needs structure, safety, and routine. When we visit, he doesn’t always register who we are anymore, and that has been incredibly hard to sit with.

I don’t know how long this stage will last or whether there’s another one ahead of us. Dementia moves differently for everyone – in its pace, its patterns, and its impact. All we can do is meet each change as it comes.