Dementia from the inside

Messages for practice

People with dementia:

May interpret things that happen differently to those around them
May have unanticipated periods of lucidity and periods of confusion alike
May sometimes not recognise people or places they know well
May become frustrated with themselves or those who struggle to understand them
May not be able to articulate or communicate their anxieties, fears or frustrations
Live with unpredictability, such as the passage of time
What is the video about?

In this film we find out what it might feel like to live with dementia. Viewers will experience a little of what it is like to find yourself in a world that seems familiar and yet doesn’t always make sense. The incidents pictured in this film and memories recounted are based upon true experiences gathered from people living with dementia


Who will find this useful?

Care staff, social workers, care managers, managers, registered managers, carers, community nurses, nursing staff, occupational therapists, people with dementia, people who use services, employers, trainers, families, friends and neighbours.

[emmym]

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

[kaylaisnothere]

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.

[rebeccaraimato]

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

[Pyovali]

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

[Luukra]

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.

[NLBeezer]

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.

[hikonz]

its like your mind is just being deleted..

[feather]

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

[kokichioma]

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

[karami]

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.

[bobbycurran]

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

[McSquiddington]

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.

[skullmalice]

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

[daraithe]

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

[bobbler]

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

[ladyjane]

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.

[nidhikmth]

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

[PanchoPantera]

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

[mandlin]

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.

[allykayyy]

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.