It starts with a set of keys. You know you put them somewhere, but the "somewhere" has vanished. That’s normal aging, right? We all do it. But then the air in the room changes. You’re standing in your own kitchen, and for a split second, the layout feels foreign, like a stage set you haven’t quite memorized. What does dementia feel like? It isn’t just forgetting names or dates. It is a slow, structural shift in how a human being perceives reality. It’s a glitch in the software of the soul.
Imagine trying to watch a movie where the subtitles are three seconds ahead of the action. You're constantly scrambling to bridge the gap. That’s the daily internal monologue for millions.
Most people think dementia is a memory problem. It's not. Not entirely. It’s a sensory processing disaster. According to Dr. Sanjay Gupta and various neurologists at the Mayo Clinic, dementia—specifically Alzheimer’s—is the physical death of brain cells. When those cells die, the world stops making sense. It’s like the "user manual" for life is being deleted page by page, starting with the index and moving toward the core chapters.
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The Fog of the Familiar
Have you ever woken up in a hotel room and for five seconds didn't know where you were? Now, imagine that feeling lasting for three hours. Or three days.
Early on, it feels like a persistent, nagging "tip-of-the-tongue" syndrome. You know the word is kettle. You can see the steam. You can hear the whistle. But the word is trapped behind a locked door in your mind. This is often called aphasia. It’s frustrating. It’s exhausting. You start to use "thingy" or "that gadget" because your brain is literally routing around a physical hole where the word used to live.
Socially, it's terrifying. You’re at a dinner party and someone tells a joke. Everyone laughs. You laugh too, but only because they did. You lost the thread of the story three sentences ago. You’re masking. People with early-stage dementia are world-class actors. They smile, they nod, and they use vague phrases to hide the fact that the map in their head has been wiped clean.
Sensory Overload and the Scrambled World
The world gets loud. Like, really loud.
When the brain’s filtering system breaks down, every sound is treated with equal importance. The hum of the refrigerator becomes as loud as the person talking to you. The pattern on a carpet might look like a hole in the floor. This is a real phenomenon—visual-spatial processing errors. A black rug in a doorway can look like a bottomless pit, causing a person to freeze in fear. They aren't being "difficult." Their brain is reporting a life-threatening drop-off where there is only nylon fiber.
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- Fluorescent lights might flicker like a strobe light in a club.
- Mirror reflections can look like a stranger standing in the room, leading to "mirror sign" delusions.
- The sense of time stretches and compresses. Five minutes feels like an hour; twenty years ago feels like this morning.
The Emotional Rollercoaster: From Anger to Apathy
Anger is a common "symptom," but that’s a clinical way of saying someone is scared out of their mind. If you woke up and a stranger was trying to take your clothes off to "help you shower," you’d swing at them too. That’s the reality of late-stage dementia. The "caregiver" is a stranger. The "home" is a warehouse.
It feels like grief, but for yourself.
Some days are "clear." These are the heartbreakers. You wake up and you know exactly who you are, what you’ve lost, and what’s coming. Then, the tide rolls back in. This fluctuation is especially common in Lewy Body Dementia, where the person might be totally "there" one hour and hallucinating small animals the next. Robin Williams’ widow, Susan Schneider Williams, described this as a "terrorist in my husband’s brain." It’s erratic. It’s cruel.
Why the "Memory Loss" Label is Misleading
If you only focus on memory, you miss the physical exhaustion. Processing a world that doesn't make sense takes an immense amount of caloric energy. This is why people with dementia sleep so much. Their brains are working overtime just to identify a fork.
It also feels like a loss of "Executive Function." This is the stuff we take for granted:
- Planning the sequence of making a sandwich.
- Understanding that a red light means stop.
- Managing the "filter" that keeps us from saying something rude to a stranger.
When the frontal lobe degrades, the filter goes. You might say exactly what you think. It's not "mean-spiritedness"; it's a hardware failure. The brakes are out.
Actionable Steps for Navigating the Diagnosis
If you or someone you love is starting to feel this "thinning" of reality, don't wait. The earlier you intervene, the more agency you keep.
Get a "Rule-Out" Exam
Sometimes it isn't dementia. It could be a Vitamin B12 deficiency, a urinary tract infection (UTI) which causes massive confusion in seniors, or severe depression (pseudodementia). Rule these out first with a full blood panel.
Audit the Environment
Simplify everything. Remove the busy patterns from the rugs. Increase the lighting—dim shadows are where hallucinations thrive. Label the cabinets with pictures, not just words. A picture of a cup is easier for a damaged temporal lobe to process than the letters C-U-P.
Stop Correcting, Start Validating
If they think it’s 1974, let it be 1974. Arguing with someone whose brain can no longer process logic is like yelling at a person in a wheelchair for not standing up. It’s useless and unkind. If they ask for their mother who passed years ago, don't say "She's dead." Say, "Tell me about her. What was her favorite thing to cook?" Step into their world instead of forcing them into yours.
The "Dementia Clock" Strategy
Buy a digital clock that specifically lists the day of the week and the period of the day (Morning, Afternoon, Evening). Losing track of the day is one of the most disorienting feelings; having a fixed point of reference reduces the baseline cortisol levels and keeps the "feeling" of dementia from becoming a full-blown panic attack.
Dementia feels like a slow fading, a series of "mini-deaths" of the self before the body finally gives up. But within that fading, there are still moments of connection, humor, and pure emotion. The person is still in there; they're just behind a very thick, very foggy pane of glass.
Create a "Memory Wallet"
Carry a small flip-book with photos and names of key people. It serves as a literal external hard drive for the brain. When the "feeling" of being lost hits, having a physical anchor can prevent the spiral into agitation.
Prioritize Sleep and Hydration
Dehydration mimics dementia symptoms and makes actual dementia significantly worse. A brain with shrinking volume needs more fluid to maintain what function it has left. Small, consistent sips throughout the day can actually improve the "foggy" feeling more than some medications.
Focus on the "Feeling" Tone
Long after a person forgets your name, they will remember how you made them feel. The amygdala (the emotional center) often outlasts the hippocampus (the memory center). Even if the world feels like a chaotic, confusing mess, a calm voice and a warm touch provide a sense of safety that transcends language.