I am so terrified of dementia, if I played this game I would spend most of it in tears and eventually end up curled up in a little ball in the corner of the room.

Nope Nope Nope.
posted by blurker at 8:43 AM on November 20, 2014 [3 favorites]

My mother has advanced Alzheimer's. I go to support groups for families of Alzheimer's sufferers. There are so many people who, at least at first, can't grasp what is happening to their loved one, and are completely offput and even angry over the inability to communicate or understand what is happening. If this game can help family members to understand what is happening to their loved one, even if just a little, I can see great worth in it.

I'd be very interested in playing it, myself. I'm pretty curious as to how they came to model what a dementia sufferer actually experiences from their perspective. I mean, there's plenty of technical research into what is happening to the sufferer, but that's quite different from what the sufferer is personally experiencing.

Here's the direct link to the developer's site. And, though they say Windows and Mac, I'm only finding the Windows version.
posted by Thorzdad at 8:52 AM on November 20, 2014 [4 favorites]

My later mother had Alzheimer's. The last few paragraphs of the article were familiar and difficult to read. I wonder about the game.
posted by oflinkey at 8:56 AM on November 20, 2014

One of the characteristics of Alzheimer’s and dementia is a loss of self-awareness, which is called anosognosia. “People who actually have a memory problem are usually not aware they have a memory problem,” Galvin told me. “If you talk to them they’ll admit that things aren’t going as well as they used to, but they don’t have a lot of insight into their own problems.”

I just learned about this you-don't-know-what-you-don't-know aspect recently and it was a eye-opener for me. My MIL's forgetfulness/dementia has increased markedly over the last year. Her denial of the severity is a very frustrating aspect. Her sons finally got her to see a doctor (and that took a lot of work) who gave her some meds that might have helped at least a little early on but she just refused to take them.

If this happens to me, I hope I will at least have the wherewithal to trust those around me who tell me I'm having problems.
posted by Beti at 9:00 AM on November 20, 2014

Her denial of the severity is a very frustrating aspect.

My mother never went through any denial. It overtook her very quickly once it started happening. As she was succumbing, though, your could see some semblance of...panic? fear?...in her eyes, as though she knew something was wrong but she had no longer had any facility to explain or express it. Like there was fear somewhere in there, but it was being drowned-out. Like the last little spark of self-awareness was flickering out.

fuck. dementia.
posted by Thorzdad at 9:06 AM on November 20, 2014 [8 favorites]

I'll forgive Boomers a lot if they get euthanasia legalized in this country before my old age.
posted by The Card Cheat at 9:16 AM on November 20, 2014 [8 favorites]

Dementia is my greatest fear. A few weeks ago, I celebrated my mumble bday with some friends. And we were all reminiscing about things, and my sister was talking about the time she and I went to see Aida right after it opened. And she told this wonderful story about everything we did before, and how we wept during, and what we did after....

I have no memory of it. None. I remember being in Manhattan that week. I remember seeing other shows that week. But of that evening, there is nothing. I have no memory of the show, it's storyline, the music...nada.

It's not the only incident where people tell a funny story about something I've done or said or whatever...and there's just nothing there. Like...there's not an empty space where something *should* be...there's just nothing there at all.

It's terrifying. Having watched two women I admire suffer Alzheimer's, if I got the diagnosis, I would probably start talking to the people in Europe who can help with assisted suicide. I cannot imagine being trapped in my own head. It's my worst nightmare.
posted by dejah420 at 9:17 AM on November 20, 2014 [4 favorites]

It's terrifying. Having watched two women I admire suffer Alzheimer's, if I got the diagnosis, I would probably start talking to the people in Europe who can help with assisted suicide. I cannot imagine being trapped in my own head. It's my worst nightmare.

Advanced ALS is being trapped in your own head.

Alzheimers and other forms of dementia are like being HAL as the memory chips are removed. Your body is fine, but your head slowly becomes empty.
posted by hippybear at 9:25 AM on November 20, 2014 [1 favorite]

I just got off the phone with my husband. His father has Alzheimer's and we just found out he has prostate cancer this morning. Anosognosia, which is not the case in all Alzheimer's patients throughout the disease is a MAJOR aspect of his Alzheimer's. He has absolutely no awareness of forgetting or other aspects of his disease at all.

Getting him to see a doctor becomes an ordeal in which we have to spring it on him at the last minute or it causes anxiety for days. At the time of the appointment, he refuses to go or gets angry and during the appointment, forget it. The doctors don't know anything, they're all a bunch of schemers, they just want my money, etc. He is then cranky or outright an asshole for days afterward, even if he doesn't remember having the appointment because of the amorphous anxiety it caused.

We decided this morning not to get him treatment for his prostate cancer. It is a quality of life issue. It will throw him into such a spin. I just can't imagine what sedation, a biopsy and the resultant pain and side effects will do to him. It's not like he would understand surgery. I guess I'm just bouncing this off the blue wall.

Anyway, I'd love to play the game and see what it's like.
posted by Sophie1 at 9:48 AM on November 20, 2014

if I got the diagnosis, I would probably start talking to the people in Europe who can help with assisted suicide.

Just as a quick note, if that ever was the case, there are several states as of this point that do allow physician assisted suicide. There are people who move to these states to gain residency specifically for those services.
posted by furnace.heart at 9:51 AM on November 20, 2014

You can't get physician assisted suicide if you have dementia. It is a catch 22.
posted by Pembquist at 9:56 AM on November 20, 2014 [2 favorites]

I watched my Grandfather slowly die of Alzheimer's and my Grandmother-in-law has dementia. I hope this game can spread some awareness. I'll be playing this very soon and sharing.
posted by Twain Device at 10:00 AM on November 20, 2014

We watched my mom go in a few years from being a smart, intellectual, dynamic whirlwind of activity to someone who couldn't recognize her children due to vascular dementia. It was just so frustrating to watch from the outside, I can't imagine going through it myself.
posted by octothorpe at 10:17 AM on November 20, 2014

Well, to be honest, I don't think it's a very good simulation of dementia. The author says as much in the concluding paragraph,

Most of the things I watched my grandmother go through were missing in its simulation, but I was reminded of the helplessness I felt. After solving the first few puzzles in Ether One, I realized that I’d been storing way too many items back in the hub world. It reminded me of my grandmother’s stuffed bookshelves in her nursing home room—old books, half-used perfume bottles, porcelain ferrets, a piece of Bohemian glass I’d given her once—we’d kept as much as we could when she moved in, trying to guess what might mean something to her and what might be lost for good. If video games indulge in a fantasy of objects—swords, spaceships, and the like—it’s one that’s hard to translate into a room filled with forgotten things. In Ether One, I found that the distance between these seemingly incompatible worlds lessened just a little. Even though I couldn’t quite forget myself inside its artifice, it was comforting to have the space to try.

Really, it's not a simulation at all, since the player character is inside of the mind of a dementia patient, but has as much agency as the player themselves has. Dementia is a setting and a prop, but not a central aspect of play.

I really wanted to like Ether One, but the movement speed is soooooo sloooooow that I couldn't bring myself to continue after the first chapter. Maybe the dementia aspect becomes more prominent later, but it seemed like a pretty typical Myst homage overall.
posted by codacorolla at 11:07 AM on November 20, 2014 [3 favorites]

Getting him to see a doctor becomes an ordeal in which we have to spring it on him at the last minute or it causes anxiety for days. At the time of the appointment, he refuses to go or gets angry and during the appointment, forget it. The doctors don't know anything, they're all a bunch of schemers, they just want my money, etc. He is then cranky or outright an asshole for days afterward, even if he doesn't remember having the appointment because of the amorphous anxiety it caused.

In case it is any comfort at all for you at all I will share that my mother went through a similar phase of severe paranoia. In her case she was convinced that various relatives were breaking into her apartment at night to steal or even just move things around. She would barracade her door at night, change locks constantly, and become emotionally distraught, crying like a child, because nothing would "stop them." Almost every conversation would degrade into an endless rant of profanities aimed at everybody who cared for her.

Living with this as her primary care giver was, as you might imagine, challenging.

The good news, such as it is, is that as her dementia progressed the raw paranoia and anger eased. She is now significantly less functional and more passive but she also seems to be much more relaxed and happy. She has a hard time speaking very much but seems happy to participate in group activities at her care home where, previously, she would sit alone on her room for days at a time.

I've been told that paranoia is common among dementia patients but that it tends to ease at some point. I readily believe that.
posted by LastOfHisKind at 11:18 AM on November 20, 2014 [1 favorite]

Thanks LastOfHisKind. While we are not hoping for decline, we know that decline will be much easier on him as right now I think he's living in sort of a hellish cycle of paranoia, confusion, and anger.
posted by Sophie1 at 12:22 PM on November 20, 2014

My mum is starting to show symptoms of Alzheimer's. Even with that sting, or perhaps because of it, this game sounds absolutely fascinating.
posted by turbid dahlia at 2:45 PM on November 20, 2014

I'd love to recommend a game that tries to do something positive, but I played this before I knew about this, and I gave up because it was soul-destroyingly dull to get anywhere. Sorry. I just can't tell people to go and get this game, however interesting the premise seems from the outside.
posted by edd at 3:28 PM on November 20, 2014 [1 favorite]

Why? Why on earth would anyone design a "game" that mimicked dementia? I call complete BS on any redeeming value due to this thing's ability to let others know what it feels like; no one needs a lesson in what dementia feels like, now do they really?

Dementia has destroyed people I love and, having worked in nursing homes and hospitals, I've seen the bitter sorrow of families who don't know whether to mourn this person they love who's not yet dead, or leave Sweet Mom and just get away, or sit by and watch as dementia sucks Dad's brain out of his head so he doesn't even recognize his own child, let alone recall anything they did together - these are the only choices you have when it's not a "game," but the real thing instead.

I'm old and sometimes I actually act that way, and this is one of those times. I hope these people make not one dime on this ugliest-of-all-ugly ideas - I hope they lose their shirts (and don't know where they left them).

Look at the stories just in this thread alone. Then think. No matter what they say, there can be no motive or incentive behind this except the exploitation of another form of horror for the purpose of making money. Exploitation is the word that makes it wrong. I hope the money they make burns holes in their pockets and someone takes their right to carry matches away from them.
posted by aryma at 6:19 PM on November 20, 2014

You can't get physician assisted suicide if you have dementia. It is a catch 22.

That's what advance directives are for, although their legality is murky (big PDF article), but that's more of a problem with physician-assisted suicide being not the clearest aspect of US law.
posted by Panjandrum at 8:18 AM on November 21, 2014

Well, to be honest, I don't think it's a very good simulation of dementia. The author says as much in the concluding paragraph,

It's not a simulation of dementia at all, and dementia is only touched on lightly in the intro, some audio clips and the ending. It's more a game of "Walk around in this old person's memories of places and solve puzzles".

The closest you get is the question of "is the facility you start in real or is it all in your mind" but that's more of a cliche psychological trope than anything related to dementia.

I liked it, though. Very atmospheric and pretty.
posted by ymgve at 9:30 AM on November 21, 2014