There's a particular type of exhaustion that comes with sitting in a consultant's office, hearing words like “ischemia”, "cortical atrophy" and “neurodegeneration”, nodding along because you don't want to look stupid while privately thinking "what does that actually mean for my husband on a Tuesday afternoon?"
That's exactly how my Mum felt. When my Dad was diagnosed, she was given information that was medically accurate but practically useless. If she hadn't had a daughter who just happened to be a dementia specialist, there would have been nobody to sit her down and say, "In plain English this is what's actually happening in his brain and what it means for how you communicate with him."
I've used the following analogy dozens of times when I start working with families and without fail the reaction is always "Ohhh...now I get it!"
The library with an inefficient librarian
Think of the brain as a vast, well-organised library. Every memory, every skill, every piece of knowledge you have e.g., how to make a cup of tea, your kid's names, the route to the shops, etc., is a book on a shelf and there's a librarian whose job it is to file new books and fetch old ones on request.
In dementia, the library doesn't burn down all at once. It's more like the librarian slowly loses the ability to do parts of the job. New books can't be filed properly anymore and that's why short-term memory goes first; your loved one can tell you in vivid detail about their wedding day in 1961 but can't remember what they had for lunch. It's not that the memory of lunch was never there but more that it was never successfully filed in the first place.
As the disease progresses, older shelves start to become harder to reach too. Some are near the front and stay accessible for a long time such as emotional memories, the "feel" of people they love, songs from their youth. Others, further back, become genuinely inaccessible. This is why a person with dementia might not recognise a name but will still light up on hearing a familiar tune or relax completely at the sound of a particular voice, even when they can't tell you whose it is.
GEMS® states
This matters enormously for how we behave around someone with dementia, which is exactly why Teepa Snow - the American occupational therapist whose Positive Approach to Care® (PAC™) methodology I'm trained and certified in - built a much more useful model than the standard "early, middle, late stage" language most families are given.
She calls the model GEMS® States and I use it with each family I work with because it changes everything about how carers see their loved ones day to day. Instead of thinking in rigid stages, picture someone's remaining abilities as a precious stone, each one different in what it can do and what it needs from you:
Sapphires have healthy brains that are aging normally. They're flexible, adaptable and can provide support for other GEMS if they're also taking good care of themselves.
Diamonds are still sharp, aware, often painfully conscious that something is wrong but perhaps reluctant to admit it. They're still capable and independent in many ways but cling to routine, responding best to structure, not correction.
Emeralds are more unpredictable. They may be searching for a role or a purpose, wandering, repeating questions, sometimes anxious. Engagement and gentle redirection works best, not reasoning.
Ambers are focused intensely on sensation: touch, texture, movement, rather than language or logic. They respond well to hands-on, in-the-moment connection.
Rubies have lost a great deal of physical ability, retaining strength but not skills and need much more hands-on support. They can still respond to warmth, touch and tone of voice though.
Pearls are in the final stages of dementia, often bed-bound and communicate almost entirely through their body and their senses.
Here's why this matters practically: a person can move between these states within the same day, sometimes the same hour, depending on tiredness, pain, noise or how they're approached. For example: a "Diamond" who's had a bad night's sleep might behave like an "Emerald" by afternoon. Understanding this stops carers from thinking their loved one is being "difficult" or "doing it on purpose" and halts the guilt spiral so many family carers fall into when they lose patience with someone who seems, on the face of it, perfectly capable.
Dementia is a fluctuating landscape
My Dad had days where he was as sharp as anything, conversational and constantly offering to help Mum with simple chores like food preparation. 24 hours later though - sometimes just over the course of a morning - he genuinely couldn't find the word for "cup." Once my Mum understood that this wasn't him "having a moment," but the very real, physically explainable nature of how his brain was working that day, she stopped taking it personally and automatically correcting him. That single shift changed their relationship for the better in the time they had left living together at home.
If there's one thing you take away from this post, know that dementia isn't a straight, predictable slope downward. It's a fluctuating landscape and understanding what's happening in the brain even in the simplest possible terms is the single most useful piece of "treatment" nobody hands you at diagnosis.
