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Thursday, 24 April 2014

Dementia Fear

Back in the stone age when we were little kids, it was called senility. Probably, like me, you knew an elder or two – perhaps family or maybe a neighbor – who fit that bill.

Mostly, in my memory, they were just a little “off.” In one case, a neighbor was sometimes, but not always, confused about who he was or who I was. In another case, a friend's grandfather often lost his way while out walking and didn't recall where he lived.

Whoever found him – everyone in the neighborhood knew and understood his difficulty – walked him home and he seemed grateful for the help.

Without any facts whatsoever, all these years later I am guessing that anyone with less benign symptoms was kept at home or placed in an institution.

Nowadays, we call it dementia and too often use the name Alzheimer's disease as a synonym when, actually, it is the name of one kind of dementia; there are others. But for today's purposes that doesn't matter. We are talking about brain diseases that cause progressive loss of memory and cognitive ability.

Dementia is a terrifying thing to contemplate and it gets worse every time some well-meaning “expert” tells us that anyone who lives to be 85 has an almost 50/50 chance of becoming demented. Here are some other awful things they tell us:

A new case of dementia is diagnosed in the U.S. every four seconds

One-third of elder deaths are caused by dementia

Old age is a risk factor for dementia

Women are at greater risk for dementia than men

Lots of experts quote that last statistic but I question it. Women generally live longer than men so it could easily be that men, who might otherwise become afflicted with dementia, die before it happens to them and therefore both men and women are equally at risk.

All this along with the reports and research on the toll the disease takes on family caregivers makes dementia more terrifying than cancer – at least for me.

But frightened or not, I am always curious about it; I go out of my way to read books and new study results about it, and to see such movies about dementia as The Notebook, Away From Her, Amour, Robot and Frank, among them. There are more than you would think.

What none of those movies and research can tell us, however, is what dementia is like from the inside.

A few weeks ago, a simple little video game titled ALZ appeared online. Its creation is credited to a 21-year-old animator named Dylan Carter who writes at the game website that it is

”...an experimental short film in ever-so-slightly interactive of a format. Enjoy your walk. Interact with your surroundings. Or don’t. Have a forgotten, but hopefully not forgetful, experience.”

Nowhere can I find anything online to explain why Carter would know anything about the personal experience of dementia or even if it resembles what little is known about that experience. But is seems plausible to me.

Here is a screen grab of the opening scene:

ALZ Screen Grab

I can't embed the game so I'm sending you to the newgrounds game site where it lives. If, like me, you are only vaguely familiar with how to operate games online, here are some easy instructions (this won't be difficult for you):

  1. Click the word “play” when it appears
  2. Hold down the right arrow key to move the character forward. Or tap it to go more slowly
  3. When [space] appears in the upper left corner, hit the spacebar to read the internal commentary of the character. Do this more than once to see the several thoughts in each instance.

Before you click over, let me mention that the video game is beautiful in its own, little way. And it is unutterably sad too.

Here again is the link to the video page. When you're finished, come back here let us know what you think.

By the way, if you are so inclined (as I was) to look for this on YouTube, please do not. Some #$%^& jerk has posted it there with his own commentary on top of the music that completely ruins the creator's work and the viewer's personal experience of the game.

Big hat tip to Steve Garfield for letting me know about this video game.


At The Elder Storytelling Place today, Carl Hansen: Piano (and other Life) Lessons


Posted by Ronni Bennett at 05:30 AM | Permalink | Email this post

Comments

Does one have to "sign up" and log in to this game. I waited and waited and "play" never appeared. ??

There is something sweet about the game. When dementia began to overtake my mother with her Parkinson's she was not sweet - she was ANGRY! as hell. It was hell for her. Dad, at 96 just became frustrated, as I do at 70, when I just forget a word...

Tissi...
The word "play" appears on the pink title card immediately after the commercial. Just click it.

Ronni, that statistic about "1/3 of elder deaths are due to dementia"...Do you recall how they defined "elder"?

That's really lovely. And thanks for the directions. I would not have known how to play it. :-)

Thank you for sharing. It is a lovely, simple way to see, perhaps as someone with dementia sees. The young game designer certainly knew what he was doing.

It was beautiful and sad. Also thanks for the directions.

Here's a link to the American Academy of Neurology with the quote about the death rate with Alzheimers.
https://www.aan.com/PressRoom/Home/PressRelease/1253

I think I am a pretty tough gal, but like most of my
peers I fear dementia of any nature more than death. This little game "feels" like it might be inside the person and that makes it even better - or worse. I can understand that one would be angry if dealing with those feelings.

For some insight into dementia, I would recommend Turn of Mind by Alicia LaPlante. Here is a description: A New York Times bestseller, Turn of Mind is a literary thriller about a retired orthopedic surgeon suffering from dementia and accused of killing her best friend. With unmatched patience and a pulsating intensity, Alice LaPlante's debut novel brings us deep into a brilliant woman’s deteriorating mind, where the impossibility of recognizing reality can be both a blessing and a curse.

I know it is knocking on my door. I haven't begun forgetting where I am yet, but I forget everything else that was with me just a moment ago. I couldn't even remember your instructions on opening the game. It's a lovely little piece.

My grandpa had dementia after he broke his hip. He could still remember some things for a while, but within a year he lapsed into a vegetative state. The same thing happened to my dad following bladder/prostate surgery, although my dad was raging with anger and my mother became afraid of him and had to place him in a nursing home.

My grandmother also became demented, but I don't know if there was any precipitating cause. She lived in a strange world, mis-identifying people, but able to carry on short conversations without you knowing that she was demented.

I will probably become demented, too -- it's like the deck is stacked. When I know for sure that it's happening, I'll do something to stop it. I do not want to be a burden, nor do I want to be at the mercy of anyone.

@Tissi-I had to reboot safari to play it..it may not be comparable for all platforms for some reason. It should load quickly and if it does not try downloading it again.
@Mia-An FYI to others interested in stories about the subject.."Turn of Mind" is also available on audio book-beautifully narrated.

As has been said, Ronnie, thanks for bringing this to my attention. My dad became somewhat demented in his 80s. I worked in downtown Portland and he would take the bus into town, come to my worksite and want me to go out for coffee with him-several times a day. People in my 'office neighborhood' knew who he was and would call me-tell me "Your Dad looks lost-maybe you should go find him" I hope someone does that for me in 15 years!

"• Women are at greater risk for dementia than men

"Lots of experts quote that last statistic but I question it."

From a report on the US National Library of Medicine website (dated Jan 1997), the age-adjusted data do not vary from the non-age-adjusted data by enough to make me agree with any misgivings. If I did the math correctly, the ratio of dementia in woman to that in men was reduced by about 15%. More significantly, the ratio of Alzheimer's was reduced by a factor of 2 - certainly highly significant, but it still means that, according to the report, 3 times as many women as men die of Alzheimer's.

There is a mobile app game that has just come out (may be the same as the one above - I don't know) that supposedly checks "...if a person has a high likelihood of developing Alzheimer's....by their game-play. The game requires the player to multi-task, which is the discriminator. Since I have never, ever been able to multi-task, I infer that I am highly likely to develop Alzheimer's.

The good news is that no one in my family has ever displayed dementia for more than a few months.

P.S. I do believe that women are, on the whole, more likely to develop dementia because (for whatever reason) too many women have not been privileged to live a life in which their brains were highly stimulated. Women get the dull drudgeries of life, in general.

Nobody in my family has lived long enough to get dementia, I suppose. If that's the price I have to pay to avoid it, I'm willing.

Watched/played the video. Tears in my eyes now ...

I have a terrible fear of dementia. I've always maintained full control of my faculties, behavior, and thoughts. The thought of losing all that, piece by piece, is terrifying. As is the idea of being in any kind of nursing home or facility where others have control over me. I'd rather be dead. Seriously.

Here at the ALF, we run the gamut from so called "normal" people to those with mild and no-so-mild dementia. Although our facility is not licensed to accept Alzheimer's residents per se, we do have a large number of folks who are on the brink. It is sad for me personally to watch people who I've known for almost two years go from being alert, and eager to participate in activities here to a people who cannot remember if they had dinner or not. In the brief period of only a few months one lady, who could be found, every day, in the library reading everything in sight, now spends her days in the lobby staring at the wall.
Although my parents did not suffer from dementia and were of sound mind until the the end, what fate has for me I do not know. The one thing that I do know is that more research has to be done into this disease. And to those who think that research is a waste of time and money because "After all, they're going to die soon anyway" I say this, "Ask not for whom the bell tolls, it tolls for thee".

Wonderful video, Ronni. Thank you for sharing it.

Dementia is a terrifying possibility to me,too. The worst aspect is that in the early stages I'll know it's going on.

NPR did an on-going segment on All Things Considered a few years ago about an herb farmer progressing into Alzheimer's. He recorded his thoughts and what was happening in his life each week. His final self-recorded piece, in which he said he could no longer continue to dictate his decline was heart rending. i tear up yet again just remembering.

With people living so much longer, it really needs research.

Just an hour ago I read an article that says much of what you say but in relation to Parkinson's disease written by Michael Kinsley called "Have You Lost Your Mind?" in the April 28th New Yorker magazine. It's both fascinating and scary; he writes brilliantly and with humor. Living longer and longer is proving to be a very mixed blessing for many of us.

I had one of those memory lapses in the middle of a conversation last evening and didn't retrieve what I wanted to say until I woke up this morning. Egad! Does it mean something I should worry about? I don't know.

I was surprised at the article because I've read several references to dementia being the third most common cause of death among the over 85 demographic. Research is increasing because the cost of caring for the huge numbers of the elderly with dementia is mind-boggling and possibly unsustainable.

For those who think they'll determine their own fate once diagnosed, the ability to make those kind of decisions is one of the first capacities to disappear, so eat your vegetables, go for a brisk walk every day then relax and enjoy your life. That's the only control any of us really have on this issue.

I used to read your blog regularly a few years ago but lost track. I'm glad to have found you again!

I don't know if you've heard of Dr. David Hilfiker's blog. He was diagnosed with Alzheimer's two years ago, and he has been writing about his experiences: http://www.davidhilfiker.blogspot. It's great to be able to read about an insider who's also a doctor.

Thanks to Celia for posting the link to the way the research defined "elder." So dementia is the third-leading cause of death in people 75 to 84 and people 85 and over. It seems to me that, yes, the problem is that we are living long enough to get AD. I'm losing my 3rd relative to it now; my mother was the first.

The best way to avoid dementia is to do what I am am going to do, stop getting any tests for cancer or heart stuff after 65. Then you get terminal cancer and if you are lucky to live in Oregon you can have a nice drug cocktail and check out peacefully.

The other alternative is take the SAGE online dementia test from the University of Ohio every year on your birthday, maybe twice a year. Then at the VERY FIRST signs Dignitas will take you, you cannot leave it too long though or you won't be given a choice on how you will die.

I am a great Henning Mankell fan and have read all of the Inspector Wallendar series. His last book with Wallander nearly broke my heart, as by the middle of the book I could see what was happening and it made me furious at Mankell.
Wallendar is beginning Alzheimer's disease. The character has become a friend in a way, and to imagine his long years ahead failing year after year was too much.

I watched two neighbors, a couple, both descend into Alzeheimer's disease. He died before she did, as his had progressed further before it became really obvious to all of us on our short 9 house street.

I'm 81, and every loss of a word, forgetfulness of what I was in a room for, a name of someone I've known of for years, causes panic. But, so far, the word most often comes to me, I eventually remember why I was in the room, and I remember the face or the connection if not the name right away.

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