Years ago, I finished up my talk at a conference and stepped off the stage. A few minutes later, a woman appeared in front of me.
“Hi,” she said. “My husband has Lewy Body Dementia and got the diagnosis three years ago. How long does he have to live?”
I don’t remember what my immediate reaction was, but if I had to guess, I imagine that my mouth dropped open.
“Uh…I honestly have no idea,” I replied. “I’d need a lot more information to even be able to take a decent guess, and, on top of that, it wouldn’t be a safe or accurate thing to do.”
She wasn’t satisfied. “Alright, but if you had to pick a number, what would it be? 2 years? 7 years?”
“I really don’t want to pick a number,” I shook my head.
“Just pick a number,” she said.
I sighed. “He could trip and fall and die tomorrow. He could live well with the disease for another 5 or 7 years. There’s literally no way to tell because everyone’s experience with dementia is different. If anyone gives you an exact number, they’re just taking their best guess.”
She paused and seemed to take this information in. “Okay, thank you,” she replied, clearly disappointed, and walked away.
When I worked at my first role in a dementia care community, one of the things I was tasked with was “staging” my residents.
In order words, I had to make notes quarterly about what “stage” of dementia they were in. This was difficult me. What I came to realize was this: people aren’t numbers. It is really hard to put people on a 1-7 scale based on their deterioration through dementia. The scale we had to use was some company-made version of Dr. Reisberg’s scale here:
I’d have to put my residents as a “3″ or a “6″ depending on where I thought they were, but it was nearly impossible. I ended up putting a lot of my residents between numbers, like a “4.5,” because I couldn’t choose. There were also days that some of my residents were worse-off than other days.
Scales are great in clinical environments, but they’re tough to use for day-to-day caregiving and care partners.
Depending on the cause of dementia and the person living with dementia, the signs and symptoms of the stage were completely different. For example, I had residents with very early-stage dementia who had lost the ability to speak. Then, on the other side of the scale, I had people with very late-stage dementia who could still communicate quite well and remembered names, but had to be fed and were completely incontinent.
Instead of staging people on a 1 through 7 scale, I recommend this: Early Stage, Moderate Stage, Advanced Stage. Though it sounds too simple, that’s the point. People move through dementia at completely different rates and often have completely different symptoms at different stages.
Here’s the scale I work off of, in my head, when I’m talking to people with dementia.
EARLY STAGE (not to be confused with the phrase “early onset,” which means a diagnosis is made before age 65) – People are often aware of their impairments, although they are still functioning, to some degree, normally. They may have trouble with their memories. They may struggle to understand how time works, and end up missing appointments or getting confused over dates. They may mix up names, but not realize they did it. At this stage, friends and family may start to notice changes, but aren’t sure what to do about them. There may be some hoarding or other odd behavior.
Early-Moderate – I’ll talk about people being in an “early-moderate” stage when they seem to fall between categories.
MODERATE STAGE – When I’m doing this mental staging, for me, this is the stage where people do not realize that they are impaired. They go about their days as if nothing is wrong, but it’s clear that they aren’t functioning at all normally. They often have a “far off” look in their eyes, as though they are present, but not truly there. People may struggle with eating, bathing, dressing, choices, mood, communication, ambulating, and more.
Late-Moderate – I’ll talk about people being in this category when they don’t fall simply in “moderate” or “advanced.”
ADVANCED STAGE – When I put someone into an “advanced” stage, it really means that I can foresee them passing away with in the next 1-2 years. They do not know that they are at all impaired. They often have trouble with all of their activities of daily living (eating, bathing, dressing, etc.) and need caregivers to do everything for them. They often have trouble interacting with people around them.
I think that they are easier to follow along with because people aren’t numbers. While staging is great for a clinical environment, it doesn’t feel realistic to use in day-to-day life. It’s really hard to assign someone a number when, on any given day, they may be more or less progressed in the disease process.