The idea of the organ holding your conciousness and memories together start to deteriorate is horrifying.

People with dementia talk in such a longing and reminiscing way, I find it so heartbreaking. Even when she recounted last night she was speaking as if it were a distant memory.

This is an extra shot of depresso. We don't have many days

its like your mind is just being deleted..

Imagine how strange everything would look if you didn't know what everything is anymore.

I work with elders who suffer with Alzheimer's and dementia and this makes me so sad that my residents deal with this every day

This triggered some awful feelings in me, I used to be a caretaker for mid-late stage patients. Interpretations aside, this is hands down the worst thing a person can die of.

My pawpaw (grandpa) has dementia, and has had it for 9 years now, he's 87. He'll start talking about something and will say the same thing over and over with little differences each time. He gets up late at night with a flashlight to go outside and feed a cat that comes around a lot. Just a few days ago he tried to cook eggs on the stove using a plastic bowl. He has multiple mood swings every day from happy to mad. Dementia is a lot worse than this.

My dad recently died with Parkinson’s and dementia. For him, it was visual and audio hallucinations, mostly visual. He’d see rabbits and kids scurrying about the room. His sleep pattern disrupted. He slept a lot during the day and at night he rummaged every drawer in his room. He couldn’t express thoughts or speak coherent sentences. The dementia was detrimental to his Parkinson’s as he could no longer continue physical therapy to keep him from going rigid. He couldn’t follow commands or understand physical therapy steps. We suspect he had Lewy Body Dementia because his dementia symptoms came on at the same time his Parkinson’s symptoms became evident. He had sudden mood swings, one time he broke all the windows in his room with a chair, yelling he wanted to set the house in fire. We knew it wasn’t him. It was his disease. All we could do is give him space, time and lots of love.

I’m- I’m absolutely terrified.

Frick no, reminds me of a computer glitching, but irl. Level 1000 respect to people with this

I cried as I see this happening to my own mum; thanks for posting this amazing video

Dementia is so terrifying!

I’m 16 years old , and recently started as a care assistant and I love the residents but I wanted to have an understanding of what it’s like

It really is a decent visual complement to The Caretaker's "Everywhere at the End of Time". My mother's been a nurse for various homes, hospices and two hospitals, and the portrait she paints of dementia fits both this and the album. Things start out small, like a propensity to reminisce more, to daydream more. Memories turn more vivid even as they detach from any actual events. You wake up being unable to remember the name or face of your carer, but you've got this nagging, persistent bit of your twenties or thirties stuck on a loop - like a song or an image or a partial memory... You're functional, but not consistently "there". You sink deeper and deeper. You recall things that happened decades ago as if they happened yesterday, and the present day progressively loses all sense of familiarity. Your grasp of the present turns jumbled, you jump-cut from day to night and your senses start deceiving you. Some dementia sufferers also reported problems with certain textures or fabrics, a bit like an autistic person's sensitivity to certain stimuli. Things glitch out from your perspective. Assuming you're neurotypical, try and recall the split-second of confusion we sometimes get when we wake up. We're awake, but we've only just worked ourselves out of a dream. For an eyeblink, familiar things look off-kilter, and then lucidity settles back in. That's part of what dementia feels like, if lucidity came and went instead of reasserting itself. Eventually, assuming you don't die beforehand, all you've got left is your fragmented, broken, fuzzy memories. The present is a haze, thinking is almost impossible. Your sense of self might be gone, at that point. The Caretaker renders that as ballroom music pitch-shifted and stretched out, so all you're left with is a sense of alienation, of menace. You can't make out the tune, whereas you used to be able to, two albums ago. There's nothing good left, past that point - maybe the occasional clear note or two. A thought, a smile, a spark of familiarity that just doesn't stay... Even the past is in shambles. "Everywhere" has a final series of movements where you can only assume things are leading up to release, to the end of it all. Death is a single note, swelling like a church choir, draped in static - maybe the auditive representation of that last bit of the final coherent mental process dementia sufferers at that stage ever reach. You can't listen to this without sensing part of the suggesteed relief, the notion that after years of horror and confusion, dementia might just crystallize that single, final moment and lead you to release. The catch is nobody likes seeing their loved ones suffer like this for too long, so it's no surprise if assisted suicide is often talked about or considered.

This is by far the most terrifying disease a living being can ever experience

I am 47. This is what I feel and what I see every day. I hallucinate both visually and hearing. It is beyond frustrating when you hear or see things and you don't know weather or not to respond. Here's a fun one; I can't find an itch. I will feel an itch on my finger and scratch it only to find that I'm feeling myself up to find where it really is. I have seizures, lose time, put things where they don't belong. My children are starting college, someday they may get married and I won't have any memory of it. I'm so angry.

I saw my grandma with the end stages of this very sad... seeing her in a wheelchair clutching a doll baby mumbling incoherently scared me nothing like how I remembered her growing up

I came to the video while searching to learn more about dementia as my grandmother who is 83 yrs old has it. As a filmmaker I must appreciate the effort which must have gone in making of this film ! It is brilliant gave me such deep insight about how my grandmom must be feeling. Will help me to be more loving towards her and see life from her perspective. Thank you on behalf of all families whose loved ones suffer each day. This film is more than a film but a gift

This made me cry....and helped me understand. In gonna go hug my mom. Thanks for posting.

The slipper but reminds me of a time when a resident in a care home I used to clean in started telling me a crocodile was looking at me. Eventually she told me she needed the toilet. I also remember a lady who was convinced she was being starved too.

My Dad has dementia and it’s hard... I wanted to watch this to get an idea of what’s inside his fragile mind. The things he does and says hurt. Sometimes he refuses to let us help him. He has tried to escape a few times

I remember seeing a film - maybe 20 years ago - made from the sufferers point of view. The people they were observing started talking in increasingly non-sensical ways - initially just using odd, strange words, which increased to entire sentences which made no sense. Their behaviour too became more random and inexplicable as did the subjects entire world. Everything became an unconnected mush. Finally when the subject died we went back to seeing other people as they were and realised it was all in the perspective of a dementia sufferer. One of the most effective realisations I've seen.

I had an OSHA instructor who told us stories of his family. One of the stories was when he started looking after his father in law who had been diagnosed with dimentia. He was always very patient with him and always did his best to walk him through things to help him make sense of situations, and to try to get him to retrace his steps when he would forget something, and always made a point to talk to him normally and not patronizing. He also, started looking after his ex-eife soon after when she was diagnosed with cancer until she had passed. As a safety director for construction sites and jobs his life has always been dedicated to helping people. Truly one of the most selfless people I’ve ever met.

I remember seeing my grandfather cry because he couldn't recognize us. That was one of the worst experiences of my life...

Unfortunately the end stages of dementia are so much worse than this. Good luck getting an end-stager to recognize a picture or a situation. It's a good video for the beginning stages though.

My grandma got dementia when I was born. She can't remember who I am it makes me sad to visit her, all she does is hums and looks at me.

My granddad had Alzheimer’s but I was really young meeting him and by the time I could remember things he was already long gone. I remember playing with another kid down the block from his house and I asked Grandma and she said it was okay. He saw me and came over there and started scolding me. I was trying to explain that grandma said I could but he cut me off by saying, “You listen here Elizabeth-!” Elizabeth is my aunt. I tried to reason with him that I was his granddaughter, Kim but that only made him madder. I had to get my Grandmother to help explain things and he stayed mad at me for weeks. It was really hard to get along with him because when I would do something my parents said was okay, he would scold me and yell at me as if I was my aunt who lives two states away. One of the common things that would set him off was wearing graphic t-shirts with things like Sonic or Minecraft on it. Those were my favorite things so I loved wearing those shirts but my Granddad always had to have a go at me for “dressing like my brother.” I’m an only child. He constantly mistook me for his daughter and it was so difficult to get along. Now I see why he was so upset. He was seeing his daughter in me and he was only trying to protect me from his perceived dangers. I remembers another time I was hoping on the carpet like any child would do to entertain themselves and he pulled me away and tossed me on the couch really hard. I hit me head on the frame and it hurt but didn’t leave any marks. I was really confused and upset that he did it but now I know he probably literally saw my aunt almost jumping down into a huge canyon. I’m so sad he never actually got to meet and speak with me instead of thinking I was my aunt all the time.

I work at a retirement home and let me tell you, it is beyond depressing. The family members that do visit sometimes leave crying cause their loved one is being difficult. Always having to wait on someone to help them get up, someone to help escort them to their room, someone to help clean them up in the restroom. I have decided that if my body or mind should deteriorate like this, I'm going to seek assisted suicide. It's not worth living through, I don't think.

Working with elderly service users, this gives me an insight to those with dementia. Obviously dementia comes in different stages but this really helped. It's interesting because it's like a mother board in a computer (brain in your head). And slowly it begins to have technical glitches....and eventually shuts down. That part where she saw something black on the carpet, really gives you an idea why sometimes those suffering get spooked. We had an elderly resident who usually is bubble but on the way to the bathroom threw her frame- because she claimed she saw things crawling on the floor. (Imagine how awful that must be).

I worked with residents with this in a care center. My father had this. I was the only family member who he could ever remember my name and who I was. There were 6 of us "Children" . I am starting to think I am getting the onset of this terrible disease. I am 63. Words and names are getting jumbled. I forget simple things. I force myself to take brisk walks around the yard to get my blood flowing-seems to help a a lot.

This sounds ridiculous but i never thought about the reality of the thoughts of someome with dementia like this? Like the idea of your inner monologue being the same as before but youre confused pretty much all the time is so scary to think about. Hope they find a cure for this one day 🙏

My grandma had a sudden and massive case of Alzheimer's that manifested basically overnight and took her from us within a week. Worst part was that I wasnt even a teenager yet and it happened right before Christmas. I guess losing her to that disease has kept me curious about it enough to look up stuff like this. Its really eye opening to see what exactly its like, helps you to understand better about how to handle others with it in the future in a way that's helpful to them.

excellent video. Should be required of all who are studying those with dementia.

this is really scary :( sending love to anyone that has to go through this. must be really scary to watch as well.

This made me cry. Alzheimer's is truly the most horrifying disease. My grandma is 102 and has had it since her mid-80s. She's deteriorated to the point where she's basically just a living body now. She's in a very good rest home where she's well-cared for, but her days are spent laying in bed staring into space. The nurses put the TV on but she doesn't watch it. She doesn't really interact at all anymore. She used to speak English, but lost it about 10 years ago and reverted back to her native Yugoslavian. Now she can't speak at all anymore. She's just gone and I find myself wishing she would just pass and be out of her misery. Nobody deserves this suffering. Can't talk, can't walk, can't take care of herself, it's no kind of life at all. I hope someone will just shoot me if I ever develop this, or that we can find a cure soon.

I was diagnosed just about a year ago. Next month I will go in for re-testing. Thank you for this video - I have wondered what to expect as this progresses ~

I took care of my grandfather for the last year he was put of a facility and this video really captures what it seemed like he was going through. It's hard to watch that's for sure but I'm gunna say this looks spot on.

I have MS, and I’m really worried about how it’s going to progress. I hope I never experience dementia. Had to watch my grandma and grandpa go through it. Still miss them to this day.

The most telling part of this useful vid is 4.14 when patient actually states "Oh it's not madness - it's me - dementia", many sufferers, however elementary or advanced, are only too aware of what they've got, even though they can do nothing about it.

My mother had this from her early 80s to just short of her 90th birthday. It really is the long goodbye each day we lost a little bit more of her until she didn't recognize any of her children or grandchildren, she just thought she was a young girl and just wanted her mother. It is heart breaking for everyone. I loved her so much she was an amazing beautiful Lady and mother 💔,we all looked after her until the end. Resting in the arms of the lord now mamX

I had a beautiful dog in my life for few years. He slowly would drift off into oblivion sometimes standing looking at the wall like he was frozen. He would be quite happy to stand with his head behind the window curtains. He seemed happy and would wag his tail when playing with our other doggies . But when you looked into his eyes there was nothing behind them.. I often wonder if he suffered from dementia. He wasn't well upstairs that's for sure as I'd owned dogs all my life Their beautiful animals and give you so much love if they take to you. Dogs are the best people.

I dozed off into a daydream while watching this video. I looked down at my hands, and thought to myself, what if, suddenly, they turned old and wrinkly? Obviously that's impossible. I am young, and haven't lived a full life yet. I've always thought about dementia as a slow degenerative disease. But for a second, I thought of it as, what it would probably feel like, later on. Maybe not even remembering it happened, or anything at all. I could look down at my hands right now and see old hands. Wrinkled hands. I would be terrified. What happened to my life? Where did it go? Who lived it? Who did I meet? Who did I enjoy my time with, or suffer with? Do I have family? Are they gone? Are my parents gone? All these questions. Instantly, thinking that this could happen, what if I looked back up from my hands, and the keyboard I am typing on right now, disappeared. And the monitor, and computer, and desk, and I was actually in a mental facility, or my wife's home, or my kids. I've never been worried about developing anything like this, but for a second, I was scared. Scared that in this daydream, I would look down and see that I had forgotten my whole life. 50 years gone in an instant, just skipped over. Thank you for creating a new phobia. I thoroughly enjoyed watching this video you all created.

It's like horror movie/video game so many uncomfortable sound and jumpscare

Thank you for your courage in making this video. My wife was diagnosed with dementia. I felt like I was listening to her. May God bless you

I saw my late maternal grandma in this. This video was so touching and provided quite an insight into what my grandma may have seen when she had dementia.

I mean, I’ve seen schizophrenics talk about how these simulators aren’t at all like what they experience so I just wonder how assumed these are as opposed to accurate.

sounds like hell.

Not here for attention or feeling sorry for myself or any of that. Im here because Just need to get it off my chest. My 12 year old dog Bevo now has Dementia and a broke back. It's sad to see him everyday hurt, not being able to function properly, it's just sad. He was my second Beagle I've had ever in my life, After I moved states he was one of the first dogs we had got. amazing dog, very loyal and had a tough life. It's crazy how one day you can see someone fucntioning normal, the next day they're hurt. I'm speechless

I wanted to work with people going through dementia but after my mother passed from having it I knew I couldnt handle it I was broken

This was like watching a short horror film. I could feel the fear an anxiety and grew overwhelmed myself as the noises grew crowded.

It's quite literally a living nightmare that you can't understand or wake up from. Harrowing and heartbreaking.

a really insightful way to help people to understand some of the difficulties people face when experiencing memory difficulties . I have watched a lot of SCIE videos and recommend them to people where possible.

Thank you for sharing this. I've lost loved ones to dementia. Now I understand what they were experiencing. Bless them all.

Thank you for showing us what it may be like with Dementia

I've said numerous times that I want to die long before dementia sets in. I don't think it's selfish or greedy to say this, either. From what I have seen my family members go through, listening to the stories people tell about it... I'd rather not exist than exist like that. Maybe it won't happen. Maybe I'll pull through like some of the others in my family did and be completely lucid until the day I die, but I don't know. It's scary, man. Being alive is scary.

Thank you for posting this clip very touching

Stages of Dementia... 1. Here we experience the first signs of memory loss. This stage is most like a beautiful daydream. The glory of old age and recollection. The last of the great days. 2. The second stage is the self realisation and awareness that something is wrong with a refusal to accept that. More effort is made to remember so memories can be more long form with a little more deterioration in quality. The overall personal mood is generally lower than the first stage and at a point before confusion starts setting in. 3. Here we are presented with some of the last coherent memories before confusion fully rolls in and the grey mists form and fade away. Finest moments have been remembered, the musical flow in places is more confused and tangled. As we progress some singular memories become more disturbed, isolated, broken and distant. These are the last embers of awareness before we enter the post awareness stages. 4. Post-Awareness Stage 4 is where serenity and the ability to recall singular memories gives way to confusions and horror. It's the beginning of an eventual process where all memories begin to become more fluid through entanglements, repetition and rupture. 5. Post-Awareness Stage 5 confusions and horror. More extreme entanglements, repetition and rupture can give way to calmer moments. The unfamiliar may sound and feel familiar. Time is often spent only in the moment leading to isolation. 6. A confusion so thick you forget forgetting... A brutal bliss beyond this empty defeat.... Long decline is over.... Place in the World fades away... :(

wow the carpet scared me

My best friend's beloved husband who is only in his sixties has just been diagnosed with PCA, having had Altzheimers for about 4 years now. It's such a heartbreakingly cruel disease.

This should be mandatory for every person taking a class and should be used as a refresher every week to remind the impatient nurses that it not really them behaving like that on purpose.

Serious question, why do we keep people alive and make them suffer through this?? Or at least why do we not give them the option to end the suffering later while they are lucid enough to still make decisions? If this happened to me, I would rather have the option to end my life instead of experience the progression of the disease. This seems like a terrifying, humiliating, and painful experience. If there's no cure then there's no reason to force people through it

Until I saw these videos a few months ago, I though dementia was just forgetting random stuff, not becoming mad and insane and hallucinating and getting angry for no reason and the brain literally shrivelling up to the point of death. Now that I know that THAT’S what dementia is, I find it a lot more saddening.

I’m working with an older gentlemen now, cooking and cleaning and just trying to give him some good human interaction.. it’s really made me look at myself and my bad health related habits. I’m taking more vitamins and have cleaned up my diet a lot. We gotta do what we can. I think food has a major impact on brain function and eventually decline.

I have anxiety and work in a dementia floor in a care home , i am really frightened about it , I feel so awful for them

this is how i expected it to be, i know this isn’t exactly accurate as we don’t fully know, but when i work with dementia patients i envision it as waking up with your family all around the house being happy to the next day waking up in a home that isn’t yours with a bunch of people you can’t ever have known

Ey, its the famous voice acter person, they be doing good

Very powerful and thought provoking video into the effects of dementia and how it effects a person and there well being. A good video if you are a social worker working alongside people who have dementia to provide a insight into how they might be thinking.

Thank you for sharing. I'm sure it'll make a difference for many people. It's important to know what it's like from inside. Elizabeth is missing was a fantastic book on the topic too.

Thank you. This does seem like a good representation of what it must be like. So frightening.

This is so well done - thank you for that! 😢 even though it‘s very sad (my mother‘s got dementia for 6 years now)

I very much appreciate the insights offered by everyone who contributed to this video. I wish more people shared it.

God bless all who struggle. Must be difficult.

OMG that explains so much.

I was a caregiver for my grandfather when he had dementia before he died, and I am starting to see signs of it in my father now too. All of that experiences plus knowing that it's genetically in my family and I will probably develop it when I'm older honestly scares me more than anything. Dementia is one of the worst things that can happen to somebody, it's terrible and it honestly makes me tear up thinking about it.

Love is the Key ...Give them Love LOve LOVE !!

Me watching this: "ok, this doesn't look so bad. so you're basically just old and forgetful of faces and names. psssh, I'm already bad at remembering minor stuff, I can handle it if i get it." *randomly teleporting from day to night, being in the same room or house but lots of objects are either gone or have changed position* Me: "oh....k. so I'm losing my grip on what is and isn't going on, but at least i'm still relatively safe. just don't do anything stupid." *carpet disappearing right underneath my feet, randomly reappearing in unfamiliar locations with no way to get back, weather changing from pleasant to stormy and finding clues as to what I was doing but not being able to put 2 and 2 together, Not even able to eat/drink without blacking in and out or dropping my food* Me:(⚆_⚆)

I had no idea it was like this for those living with Dementia. No wonder they can often be irritable. Anyone would be in that situation. Thank you for making this video, and helping those of us who are lucky enough not to have this disease, understand those who are unfortunate enough to have it. ❤️ Also, as someone with severe depression and social anxiety disorder, I totally get the "why do I upset everyone? I'm useless!" feeling. It's such an awful thing to feel, and coupled with the reality of dementia, it must be truly soul-crushing. My heart goes out to anyone suffering from this cruel disease and their families. ❤️❤️❤️

thank you so much for sharing this window into a world no one wants to live in

It’s SO important to try and put ourselves in their shoes , it helps to have much more patience and understanding , especially once they need to go into care . Imagine finding yourself suddenly in a place you don’t know with people you don’t know , you may not even understand anything they are saying . You are totally lost and wondering how you got there and how to get back home . Or you wake up suddenly in the night assuming you are at home and you think you didn’t turn the stove off or you need to feed the baby and you can’t find your baby . Imagine all this playing out over and over all day and night every day and night because your short term memory is about a minute . It’s truly one of if not the most cruel of all diseases.

This terrifies me. My mother came down with Dementia brought on by cancer in her last year of life. It was heart breaking and I pray it doesn't happen to me. I have cancer in remission, thank God, but I am also battling major depression.

The fact that I could end up like this in the final stages of life terrifies me to no end.

This is terrifying

My dad had bouts of this....and his eyes would get really big and he would shake. 😢😢😢 I feel so sad that I couldn't do anything for him.

i just got jump scared all times, if dementia is like this, it's really hell

i lost my best friend with dementia i found this very interesting to see dementia from the inside

Watching this now because I got so frustrated at work. Like SO mad. I work at a nursing home on a memory care unit. Sometimes I need to just remember how terrifying it is for THEM. How selfish am I to get frustrated when this is their reality? This is the best simulation I’ve found so far, because it includes slight hallucinations which I KNOW they must be seeing. It’s so hard to not be able to have any form of communication with them because nothing makes sense. The only way I can communicate is with a kind demeanor. Doesn’t matter what I say, as long as I’m kind. Even if it’s met with a punch to my face, they’re just scared.

Im getting this stuff after listening to Everywhere at the End of Time...it's all just so sad and it hurts so bad. I wouldn't wish any of this on anyone. Even my worst enemies.

I had a dream like this, it spooked me a little bit

What dementia might be like to live with.

great painting rei, .

I work with dementia patients, this is so sad to me.

Imagine how scary it must be to walk in to a patient and them in the final phase of this say "why are you back..."

I always try to stay active with strength training and with teaching myself a bunch of math and science topics, since I feel that those activities very likely reduce the risks of dementia. I also believe that video games are good stimulation, since they generally require problem-solving skills for adventure games and RPGs, and good reflexes and multitasking skills for a lot of action-oriented games.

So this is accurate and showing how dementia causes you to lose your peripheral vision. So it is important to approach from the front and stay at a 6 foot distance until there are signs the person is ready for you to approach. Then come to their side. Have patience and compassion. Please watch Teepa Snow if you want to learn how to communicate effectively. I have been a nurse for 15 years and run the care department for an assisted living, I still learn something new every day, there are ways to make these lives better by understanding what they are going through.

This makes me want to cry. Soo soo sad

This is exactly how I see it it’s like slipping in and out of sleep ur there then ur not then wake up some random place wondering what’s going on then slip back to sleep 😭

Actually started crying a bit :( That's so sad..

That was terrifying!!

My grandma has alzeimer together with a lot of strong impacts from strokes. She barely can talk and mostly sits in the wheelchair, often also seems to see something scary on the ground or stares into the distance and then starts crying. It's an horrible disease and I can barely deal with it, expecially when sometimes my grandma is still there, but just captured helpless in the body not being able to interact with others.