In your personal opinion, how would you describe the complexity of dementia to others who aren’t familiar with it?

Forgets stuff. Remembers stuff. Repeats stuff. Confuses stuff. Loses stuff. Messes up stuff. Needs stuff. Poops stuff. Angers stuff. Hoards stuff. Wants to drive stuff.

That's about as simple as I can make stuff right now.

The problem is that the early signs show up while they're still able to function for the most part.

My mother started asking the same question about once an hour, then it became multiple times an hour.

That was probably the first red flag that we noticed, but to be honest, things started earlier but could be attributed to other things. She became less likely to want to socialize, but we attributed that to her deafness and her inability to make out faces due to macular degeneration.

If I go all the way back to the first symptom that was really "not Mom," it was that she lost her emotions. My mom was a crier when it came to movies, the swelling of the music during the final credits, or laughing until she cried. That all went away, along with her sense of humor. She would still ask me to play silly songs I'd previously played for her on my phone, but she didn't react the same way she did. It was as though she knew something was funny, but she couldn't laugh anymore. When my dad died holding her hand, she just sat there in silence. The old Mom would have been in tears for weeks.

Dementia isn't just "losing your memory." It's so much more -- it's losing yourself.

30 years ago I worked as a caregiver in a Memory care home. The final 5 years of my work life (retired now 8 yrs) was as a caregiver in Assisted Living. I cared for many elders with every stage of dementia. The one thing I know for certain is that people with dementia are like snowflakes...no two are exactly the same.
Todyay, in my retirement, I am my older sister's caregiver. None of my previous experience and knowledge helps me much. Some days she's obviously confused, forgetful, confabulating her head off, and the the next she can seem normal to the extreme - sometimes many days in a row. I begin to suspect she is faking the whole damn thing, but then she will say or do something that proves that theory wrong.
This inconsistency in her behavior and abilities is the most difficult for me. I should be grateful (and I am, eventually) for her good days...but always feel like a fool initially. It is hard to stay grounded in the middle if another person's chaos. The only thing I can imagine being worse than being me (the caregiver of someone with dementia), is being my poor, lovely sister with the broken brain.

It was the bizarro anxiety that brought me here.

The crazy arguing. We’d go round and round and Mom would be irrational. There was NO convincing her.

I thought that *I* must be the crazy one.

Thank God for this site, and for all of you.

There is a good autobiography out there on what it feels like firsthand to suffer from Alzheimer's disease.

Living in the Labyrinth by Diana Friel McGowin.

Living In The Labyrinth is the story of how one woman found the strength and the courage to cope with a devastating disease that has afflicted five million Americans. Far from being an exercise in self-pity or a standard autobiography, this is an unflinching and ultimately uplifting look at a debilitating illness from the inside out. 
 
“Somewhere there is that ever-present reminder list of what I am supposed to do today. But I cannot find it. I attempt to do the laundry and find myself outside, in my backyard, holding soiled clothes. How did I get here? How do I get back?”
 
Only forty-five when she first began to struggle with the memory lapses and disorientation that signal the onset of Alzheimer’s, Diana Friel McGowin has written a courageous, stirring insider’s story of the disease that is now the fourth leading killer of American adults.

Diana’s personal journey through days of darkness and light, fear and hope gives us new insight into a devastating illness and the plight of its victims, complete with a list of early warning signs, medical background, and resources for further information. But Diana’s story goes far beyond a recounting of a terrifying disease. It portrays a marriage struggling to survive, a family hurt beyond words, and a woman whose humor and intelligence triumph over setbacks and loss to show us the best of what being human is. 

“A stunner of a book . . . it takes the reader on a terrifying but enlightening journey.”—San Antonio News Express

“Touching and sometimes angry . . . a poignant insider’s view.”—The Cincinnati Enquirer

What makes it difficult is that there are so many ways that dementia presents it's self.
I have mentioned this before but..I have read that someone with dementia might be able to hide or cover up signs and symptoms for sometimes 10 years before others notice and it becomes difficult if not impossible to hide symptoms any longer.
I have sort of described it like one of those pictures that people did a few years ago. You look at the picture from a distance and it is just a picture but if you look up close it is comprised of many individual images. Sort of like a puzzle. You take an image by itself and it is just that but put it all together and you see the whole picture. All the little things that seemed odd, quirky, a bit off, a missed appointment, getting lost, a missed word. Individually it means nothing but put them all together and you begin to wonder.
The important thing is to advocate for testing. Do not let a doctor ignore or brush off concerns. You know this person better than the doctor that may see him or her 1 or 2 times a year.

I would describe dementia like being on a crowded red-eye flight with an unpleasant, fussy toddler sitting behind you who isn't yours. Yet the toddler is adult-sized and capable of the worst adult behaviors.
This is how I'd describe most dementia cases I've been around.
Sometimes there are a few who just regress back into being toddlers having a good day. They have to be supervised 24 hours a day but they aren't miserable and they just get on with their days.
This is how I'd describe dementia.

At a late stage there is a general but total blankness in expression. My mother cannot really answer a simple question. She points to a beverage she will drink. She doesn't eat. Occasionally she smiles. Sometimes she can say a few words but that is happening less and less. It is like looking at someone who seems totally lost yet not concerned. Just totally empty of expression.

You have two different puzzles with missing pieces and you try to put it all together into one picture .

And everyday someone messes up the progress you made on the puzzle and changed up some of the pieces on you and you have to start over again .

The only thing that is the same everyday is some of the phrases that are repeated over and over .

NHWM- very hard to explain to someone who has no idea what dementia is. I had no idea what it was until my mother developed Alzheimer's. Years ago, a coworker kinda explained to me that her SIL had dementia and was a little loony and forgetful. And I kinda thought it was funny and cute. Haha. The joke was on me.