
What software will you trust when you get senile? - acutesoftware
https://www.lifepim.com/blog/5856_What_software_will_you_trust_when_you_get_senile
======
crucialfelix
I've just spent three days with my mother. She is in a care home. She has
Alzheimer's, a cat and a laptop. She's pretty sharp still but sinking.

The laptop throws up some warning screen on bootup about the power adapter and
recommends to go into BIOS to stop the warning. I wrote out the instructions:
just ignore and click continue. She's locked on that screen obsessing.

Anyway she doesn't have the password, so the computer is useless.

She can't stop trying though. She's shamed by not being able to use it.

If she could get in then the frustrations would only increase.

The cat is great though.

Planning tech for Alzheimer's is like designing UI for people on acid. You
have no idea how confusing things can get and how silly your interface and
assumptions are.

~~~
existencebox
My grandmother spent the last years of her life deep in the fog of Alzheimers.
Unfortunately, I can't imagine any level of tech beyond the _most basic_
supervisory and assistive care would have helped in her case. (She thought,
and had many violent incidents as a result of thinking, that I was her dead
husband, among other things)

My only silver lining is that she was too far gone to feel any of that
frustration. She lived in a different world from the rest of us near the end.

I say this because your last sentence stuck with me in that context. I'd say
it's even harder than acid, the fundamental precepts of how your brain
functions have begun to break down, and my focus, at least with preparing
myself philosophically for this path and in brainstorming assistive
capabilities, is on ways to integrate tech "invisibly." Even the most basic
things, better monitoring for incidents, the ability to detect the need for
assisted care before it became urgent, mechanisms to bridge gaps caused by the
loss of individual competence without requiring new skill sets and learning.

I was only a child when I was exposed to the bulk of this, so sincere
apologies if any of the above seems to come from a weird point of view, I
realize it can be a sensitive subject.

~~~
crucialfelix
Higher doses of acid and bad trips result in intense pattern transfer. In my
youth I've had the ink boil off the page as I wrote, confusion as to how many
people I am, and one time I couldn't understand cause and effect for a few
hours. There really is no UI for people that don't comprehend the arrow of
causality.

There is a woman at my mother's home. She had run a company, now she's in an
advanced stage of AD. She wanted to pitch an idea to me to see if I would go
into business with her. It was something that went around and around and
around and it looks at you. Eventually I figured out that she had been looking
at a rainbow windmill on the balcony and had transferred that into some cosmic
invention.

Her other idea was for a place where people could meet to work on ideas and
build electronics. Especially for young women. That's a makerspace ! I found
one in high Wycombe and considered contacting them to see if any women makers
wanted to visit this fascinating old woman.

------
RegBarclay
My father was diagnosed with Alzheimer's last month. He's had symptoms for a
couple of years, but as an engineer with a pretty high cognitive reserve he
compensated with systems, rituals, and routines, but, mostly, paper systems.

In the 30 years since my grandmother died from Alzheimer's, we haven't made
much progress on treatment. I'm now looking ahead about 30 years to the age
when my father and his mother both experienced the onset of symptoms and I'm
thinking about how I might compensate, keep myself aware of my condition, and
remain functional for longer. As a software developer who already relies
heavily on software systems to keep life organized, I expect software will
play a large role for me.

I believe there's already a market for technology widgets for cognitively
impaired people. Dad still likes to surf the internet to read the news and do
research about his condition. It would be handy if I could sandbox him a
little. Is there a way to rig a browser so a user can't buy anything online?
That would be handy.

As wearable tech -- and in 30 years perhaps implantable tech -- advances, I
can envision many devices and software aids for those with cognitive decline.

Would be nice, though, if I didn't need any of that because the next 30 years
yields an effective treatment or cure.

~~~
thaumaturgy
I've thought about this a lot too. My grandparents stayed mostly functional
into their late 80s, but I've developed a really high cognitive load for a few
decades and experienced some pretty severe sleep deprivation for a couple of
them. There's some genetic predisposition, too. I expect to be semi-functional
but forgetful in old age.

So, gradually, I've been building out a software architecture which I hope
will be able to help. A simple text-based interface to start, some basic NLP,
the ability to interface with a lot of different services. I want something
familiar, with not too many dependencies (which is why it's not a web-based
interface), that's forgiving of spelling and other errors.

~~~
Balgair
Wait, learning more stuff makes Alzheimer's Disease worse off later? I get
sleep deprivation, sure, but I'd have thought that if there is more stuff to
forget, you'd be able to 'last longer'.

~~~
thaumaturgy
Sorry, I didn't word that right. You're correct, the current literature
suggests that there's a correlation between mental "exercise" and a reduced
risk of Alzheimer's and other forms of dementia.

However, there appears to be a link between stress and stress-related hormones
and increased amyloid accumulation
([https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2905685/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2905685/)),
so if the amyloid theory for dementia is correct, then there's a fine line
between "fun" cognitive load and stressful cognitive load.

~~~
Balgair
Ahh! So a 'relaxed' style of reading and learning is the way to go then. Not
under a deadline, so to speak. Need to get that cortisol out of the system.

------
ALittleLight
I've thought about this recently. My grandfather has been struggling with some
senility like problems. He tends to leave his house in an attempt to "go home"
and wander off somewhere and then suddenly realize he's in the middle of
nowhere and doesn't know how to get home.

When I think about developing such conditions myself it doesn't seem like it
would be as much of a problem for me. If I suddenly came to cognition in the
middle of nowhere with no idea where I was I'd immediately use my phone and
Google maps to find the way back or Uber if it was far away. Likewise, if I
found myself in an unfamiliar place and had a compulsion to "go home" I assume
I'd try to use Google maps to find my home, and when it pointed to my current
location I might dig into my recent photos and notes to discover messages to
myself that I actually do live here and have been having memory problems and
what I should do is sit in a chair and wait for a bit.

I hope the advance in technology and the extent to which my phone is part of
my life and mind will make me more resilient to some of the harms of old age.

~~~
randcraw
From what I've seen, once you reach your grandfather's age, you too will have
the same problem he does -- the inability to reason your way out of the
problem. My father has reached a similar state of mind recently, and I'm not
at all sure how to address it and fill the void it created, especially since
he never was very fluent with tech (computers or cell phones), and he lives
alone.

Ten years ago your grandfather would have done what anyone without a GPS does
-- he'd retrace his steps, or bring a map, or ask someone how to get home. But
the problem now is that these things don't occur to him; his mind is no longer
self sufficient; he's confused.

I think the only _tech_ solution is for him to be able to speak aloud, "Take
me home", and hopefully there's a device in his hand (or strapped to his arm)
that understands his words and can tell him exactly what to do. Or it can send
a message to a rescue team which comes to get him.

At some point in life, when your mind is no longer able to think rationally, I
believe your digital assistant will have to take charge completely --
listening to your voice and telling you exactly what to do or calling help for
you. Hoping to restore lost cognitive skills via the right kind of device or
app is not a plan that scales well with a declining mind.

~~~
mjevans
I think you're on the correct track, but in this case the default state should
be assumed to be one of failure.

It needs to operate like a deadman switch, and if out of prescribed safety
bounds require active feedback of intent and will to not trigger stages of
reaction. Contacting family/friends, and/or emergency responders if the
situation is critical or at risk of becoming so.

~~~
sjruckle
Personally, I doubt I would get along well with an assistant that was keeping
score of all the times I was wrong, and always questioning my abilities based
on that.

"Dave, you have lost your wallet exactly 19 times in the previous 29 years. It
was underneath your car's seat exactly 17 of those times. Why are you checking
the couch for the third time? You are showing signs of dementia. Should I call
your brother for assistance?"

...

You know, I typed the first part out with an honest oposition to the idea of
an "assumed failure" state, but the situation I came up with just makes it
look more appropriate. Expecting the software to tell the difference between
all my normal insane things and genuine dementia seems impossible.

------
projectramo
I think the crucial point is you have to develop the habit before the disease
sets in.

I’ve found the Apple Watch works well because I can set reminders in the watch
for someone with memory issues and they already have the habit of looking at
their watch.

Similarly it would be useful to be able to print something that looks like a
newspaper with today’s agenda because they have the habit of reading news.

They tend to trust everything so the main hygiene is having a trusted person
running the show.

~~~
nixpulvis
Have fun with the updates then...

------
PaulHoule
See

[https://www.imdb.com/title/tt1990314/?ref_=ttnw_hd](https://www.imdb.com/title/tt1990314/?ref_=ttnw_hd)

I would not at all agree that "today's old people aren't fluent with
technology."

My Aunt Lucy in a nursing home just got a phone, she thinks Facebook is just
great so she keep track of what the rest of the family is doing.

Those "chumboxes" on the internet play to the fears and biases of the old and
you'd better believe somebody clicks on them.

Back in 2001 I went to Carthage, NY to learn how to drive draft horses and all
of the old ladies were sitting at a cafe and talking about "AOL" and "Instant
Messenger" and "Netscape" and all of that.

~~~
mikestew
_I would not at all agree that "today's old people aren't fluent with
technology."_

Today's old people wrote the software your bank probably still relies on
today. In ten years, you're going to be talking about _me_ , one of the ones
who saved you from Y2K, wrote software you have likely used (if you've used
Windows or Visual Studio, you've used my bits), wrote mobile phone software
you might be using even today, and you better hope I was having a good day
when I wrote that routine controlling the programmable logic controller in the
nuke plant down the road. So in ten years old people will magically be fluent
in technology? No, no more than your nephew can help set up that network
because he spends all day on Facebook. Techies have always been a subset of
the population, always will be. But that doesn't mean the "normals" can't use
what we produce. That also doesn't mean that "produce" has anything relation
to "consume". I don't know the first thing about making a movie, but I do love
watching one.

People drive cars without knowing what the Otto cycle is. People use
microwaves without knowing how to use a compiler for the IMX6 chip driving it.
People can use Facebook without knowing how to write a _for_ loop in PHP. But
it wasn't always this way. You _used_ to have to know something about the Otto
cycle to drive, or you'd burn the tops of your pistons off when you advanced
the spark too much with the manual lever. You better know where in the
compression cycle to start hand cranking the engine for maximum success (and
minimal arm-breakage). But that's because (take your pick) the technology
sucked, or simply wasn't ready for prime time. My wife and I were talking
about why women didn't generally drive "back then". Manual transmissions,
right? No, women drive stick just fine, ya pigs. But that's what I've heard.
Reality: power steering. Anyone with a left leg and a right arm (and I have
evidence that you don't even need the arm) can push a pedal and move a lever.
But turning our '81 VW out of a tight parking space at low speed? Yeah, you
better sack up and get a good grip on that steering wheel. Moving 4000 lbs. of
steel around wasn't quite ready to be accessible to everyone.

My long-winded point is that old people will be fine with technology. But
here's a tip for all you up-and-comers: make sure your product is not yet-
another-thing-I-have-to-fuck-with. Old people don't get technology? No, old
people have a low tolerance for yak shaving. Why did VCRs flash "12:00" back
in the day? A sign of technological doltishness? No, it's a sign that first
sentence in "how to set the clock" is, "grab a set of trimming shears..." Fuck
it, it can just flash. Your device randomly needs a reset every X number of
days because you outsourced the firmware development? Fuck it, back in the box
it goes. You get the idea. I can barely remember to take my pills, and you're
giving me something _else_ that needs regular attention?

~~~
beat
THIS.

The older I get, the less willing I am to waste time on yak-shaving bullshit.
Make it difficult or tedious, and I'll just dump your product and go do
something else with my precious time and attention.

~~~
copperx
I do the same, but I do NOT think my patience has decreased. Perhaps not being
able to deal with "yak shaving" is a sign of cognitive decline, but because
the truth hurts, we say we don't have time for such things (e.g., I have no
time to recompile a kernel! I just want a computer that works, give me a
Mac!). In our youth, complexity was fun because we were able to takle it
easily.

~~~
codetrotter
> Perhaps not being able to deal with "yak shaving" is a sign of cognitive
> decline, but because the truth hurts, we say we don't have time for such
> things (e.g., I have no time to recompile a kernel! I just want a computer
> that works, give me a Mac!). In our youth, complexity was fun because we
> were able to takle it easily.

My first computer ran Windows XP. I was 12 years old at the time and was
curious about learning how it worked. I messed around, broke the install,
fixed it by using the rescue floppy. From my mistakes I learned quite a bit,
as one tends to do.

About 6 years later, when I started using Linux and FreeBSD, once again I
messed around a lot in order to learn about these operating systems and how
things worked. And once again I learned from the mistakes that I made.

I have now been running Linux and FreeBSD almost exclusively for the past 10
years, and I will keep using these OSes for as long into the future as I can
imagine, but...

When my systems break these days, it’s a chore. Because when something broke
back when I was new to these things, it was an opportunity for learning. But
if I render my system unbootable due to an oversight during system upgrade for
example, there is really nothing new to learn from that anymore.

And that is what it boils down to for me, and why certain things made sense to
spend time on before, whereas now those same things don’t.

I am willing to put in a lot of hours on something that will either earn me
the right amount of money, teach me something new or better yet, both, but
really it was always like that — I put in the time on certain things then that
I won’t today because back then I still needed to learn about _that_ thing.

------
jarvuschris
I'm not so sure about the point that the software would need to not change.

This will be really interesting to see play out as digital natives age. One
school of thought is that we've learned a new generation of things, another
school of thought is that what we've learned is the skill of coping with
constant/rapid change.

So would an app UI changing throw off a mentally declining digital native? Or
would they just relive the same excitement every day that their app got an
update and has a whole new UI.

As futurist Alvin Toffler said:

> The illiterate of the 21st century will not be those who cannot read and
> write, but those who cannot learn, unlearn, and relearn.

~~~
cmiles74
My grandmother (96) suffers from dementia but consistently recognizes me. My
visual appearance has changed but it seems like if it's slow and gradual
enough, it would be okay.

In my opinion, the ability to learn is one of the skills that is hit hard by
dementia. The inability to string moments together and view them as a whole
makes learning something new a real challenge and the longer it takes to do
the thing, the more likely it is that it will simply be un-learnable.

------
SketchySeaBeast
Honestly, a google home or something similar seems to be the right way to go -
while it's not "secure", it's incredibly intuitive, can't be misplaced, and
has most of the functionality you'll need, and I imagine as time passes it'll
develop a lot of the rest.

~~~
notahacker
The elderly are certainly the natural use case for voice interfaces and IoT
services, since they're a group of people that often find basic household
tasks and using a GUI and handheld interface genuinely difficult. I think
there's an enormous market there for the right products.

But I suspect the mobility-impaired and the lonely-and-bored are more easily
served than those with declining cognitive functions. Once people have reached
the stage where they're starting to not recognise people or remember what year
it is, [re]discovering a disembodied voice in their living room that
_sometimes_ answers questions intelligibly and/or does what they ask of it
could be a bit disturbing. The UX problem is much harder than simply ensuring
the service doesn't make buggy recommendations, and not an easy one to test.

~~~
crooked-v
> Once people have reached the stage where they're starting to not recognise
> people or remember what year it is, [re]discovering a disembodied voice in
> their living room that sometimes answers questions intelligibly and/or does
> what they ask of it could be a bit disturbing.

On the other hand, there are people who exist now who will, in old age, have
had helpful (but occasionally stupid) disembodied computer voices around since
childhood.

~~~
notahacker
True, but they're not the main market.

And I don't think the main problem is that elderly people have never been
familiar with the idea of a disembodied voice; radio's been around since
before everyone was born. I think it's that (i) it's not necessarily smart or
human enough to persuade someone with declining mental functions that it has
their best interests at heart and (ii) one of the more distressing aspects of
talking to someone with declining cognitive function is that their perception
of the day and their problems are often filled with conversations they didn't
have (or didn't have in the last decade). Putting a machine into the equation
which conceivably could have been responsible for "John told me NOT to take my
pills" or "someone keeps asking me for money" makes untangling this more
difficult for family, as well as something the machine itself can't handle
(though I suppose smart devices with logging and "rewind/replay" functions are
a lot better than telephones with scam callers in that respect)

~~~
sk5t
I think this comment hits the mark; making a voice assistant to help a
nonagenarian who thinks it's time to get ready for school, or to send out
invitations for a long-ago child's birthday party, is a distinct challenge.

------
clort
I think the future could be radically different from what we see now,
depending on technological advances. 'Phones' with 'Apps' is one thing, but a
genuinely smart system which could have tendrils into your phone, your watch,
in your robot helper, or just being aware of what you do around the house and
have a voice would be a game changer for old people and certainly I would
expect things to go that way in the next 30 years.

I saw a film a few years ago, 'Robot and Frank' which was set in the near
future where such systems were becoming available. Frank would have perhaps
been 40-50 now and while he had used technology he was not comfortable with
the robot his son got him. At least this film educated my partner about the
possibilities of such systems and/or software without being too fantastical
(Robot is a little clunky, compared to Ava from Ex Machina)

------
mrob
I think something like MS-DOS. A CLI is good, because it gives you a record of
what happened, but Unix-style shells are packed with foot-guns as documented
in the Unix-Hater's Handbook[0]. Even with a healthy mind I've lost data to
incorrect quoting. MS-DOS is simpler. Lack of multitasking helps too.

[0] [https://homes.cs.washington.edu/~weise/uhh-
download.html](https://homes.cs.washington.edu/~weise/uhh-download.html)

~~~
RankingMember
This handbook expresses so many things I've felt, I'm surprised I've never
come across it before.

------
flareback
If I'm senile I'll probably trust all software.

~~~
SketchySeaBeast
Or you'll be demanding that the toaster tells you the weather.

~~~
dkarl
It will by then.

~~~
Verdex
It will by NOW:

[http://toasteroid.com/](http://toasteroid.com/)

> The toasteroid app, on the other hand, has several features you can enjoy.
> This is needed to be downloaded in order to work the toasteroid product.
> There’s a weather news here where you can check the status of the weather
> daily.

[https://www.kickstarter.com/projects/258723592/toasteroid-
fi...](https://www.kickstarter.com/projects/258723592/toasteroid-first-app-
controlled-smart-image-toaste)

~~~
SketchySeaBeast
They just missed their "adjustable brownness dial" stretch goal! Oh, what a
fickle lot millenials are!

------
ilamont
There's a movie that touches on this very topic and references many of the
requirements listed in TFA. It's quite good:

"Robot & Frank" (2012)
[https://www.imdb.com/title/tt1990314/](https://www.imdb.com/title/tt1990314/)

------
mettamage
I think this is a very important question. The amount of elderly people is
about to rise. Also, in The Netherlands (where I live) at least, it's a fairly
wealthy group of the population.

I see a business opportunity that is worth it from a societal and financial
perspective.

------
subjectsigma
Why an app? Friends and family should be making these decisions and helping
out. There's no need for a technological solution. I get life isn't perfect
and neither are people, but that means software isn't either.

~~~
beat
Just how much are friends and family expected to attend to someone whose mind
is in decline?

My grandfather had Alzheimer's. We attended to him more and more as he got
worse and worse. But one day, he went down to the basement while grandma was
napping, and was doing _something_ that involved a chunk of wood and a piece
of pipe in a vise, heating it with a torch while beating on it with a hammer.
Luckily, it just set off the smoke alarms and the fire department came. He
could have burned the house down with him and grandma in it. That's what
happens when you leave someone with Alzheimer's unsupervised for a few
minutes.

If software can help when they aren't being actively supervised, I'm all for
it.

------
lenticular
I installed Ubuntu on the PC of an elderly relative in mental decline who kept
downloading malicious software. It's worked quite well. She just needs a
browser and has no reason to use the terminal or anything.

~~~
beat
I gave my mother a Chromebook for the same reason. I'd given her a Windows
machine before, and she was constantly calling because she'd click on whatever
random toxic shit promised her something for free or warned her of dire
consequences or whatever, so her machine was basically a cesspool. Since she
got a Chromebook, I haven't had to do any tech support. Win!

------
skybrian
This is an important and difficult problem to think about. It's great that the
author is making the effort.

However, the article doesn't mention any caregivers. If you instead assume
that there are caregivers involved, how would the assumptions about what
software is useful change?

~~~
acutesoftware
Author here - having caregivers certainly changes it, but I was focusing on a
possible technical solution in addition to caregivers.

It would still be nice to have some impartial device tell you or confirm that
what is going on, is actually going on.

~~~
skybrian
One thing to consider is that at the point when it becomes difficult to do
everything on your own, family or caregivers or whoever is helping you need to
understand whatever devices you're using and help you use them. Maybe privacy
becomes impractical and other considerations like good record keeping become
more important.

------
nwatson
I'll trust some beautiful fem-robot that says she likes me for who I am and
that I make her laugh and tells me how lucky my late wife was and that no she
needs the bank account details just so she can wire the car down payment I've
been taking about to my granddaughter and how she's sure my daughter wants
power of attorney to get control and feed a fentanyl habit and that yes even
though I've had two heart attacks a trip to Bali would do me good.

I'm f*cked.

------
jacknews
IMHO, today's software (particularly on mobile) is barely usable for adults,
so the best software for young children and the very old is no software.

------
howard941
I won't trust anything other than my own fears at the moment and nothing will
convince me otherwise at that point. Dementia ruins everything.

~~~
stronglikedan
> Dementia ruins everything.

I like to think that it makes everything a lot more interesting. Just like I
like to think that, if I ever found myself falling through the atmosphere for
some reason beyond my control, I would enjoy skydiving once before I die,
since I would never jump out of a perfectly good plane. I'm sure I'm wrong in
both cases, but I'm perfectly happy being an eternal optimist right now.

------
acutesoftware
If anyone has any links to existing products, or organisations looking at this
stuff let please post details here (or email me) and I'll update the
references on the blog post.

I didn't find much at all in terms of software, but we need to at least try
some things.

I made a start a few years ago - just a shell really to try and work out the
requirements in my head [https://github.com/acutesoftware/acute-
experiments/tree/mast...](https://github.com/acutesoftware/acute-
experiments/tree/master/ITNOBAM)

If you want to contribute, or share any code you've done I think you should.
It would nice if we could work together on this.

------
thinkling
I'm more interested in the lead-in period before one is senile but when the
brain (memory in particular) isn't what it used to be.

I'd love sidekick software that helps remember things and can be queried very
quickly and easily.

------
samat
Reminded me of this:
[https://en.wikipedia.org/wiki/Dead_Hand](https://en.wikipedia.org/wiki/Dead_Hand)

------
jrnichols
One of the things I worry about is the web itself. I've had more experiences
with elderly folks being confused by deceptive advertising and intrusive
advertising than anything. Pop up ads, auto-playing videos, etc.

To me, the internet trash of advertising is more of a roadblock to the
elderly/senile.

------
hnruss
I wonder if it will even be a problem for me? I've spent my whole life
learning how to create and use new interfaces, so hopefully I'll retain the
ability to do so as I age? Or maybe AI will have advanced so much that it
understands even my most incoherent request?

~~~
ridgeguy
I think your facility in creating/using new interfaces won't be much of a
protective factor. I think your being, say, less than 35 years old at the
moment would be much more important. By the time you're 65+, there's a
reasonable chance there will be effective, affordable treatments.

------
jonstewart
The same as Ken Thompson, that which I write entirely myself, senility be
damned.

------
Iwan-Zotow
If I'll become senile I'll trust each and every piece of software

------
Haga
They will fish for us senile with emulated win xp or console popups

------
chrisco255
vim...since I'll still be trying to figure out how to exit it.

~~~
jraph
A nice seclusion room!

------
drskaugen
If you were old and senile, your Auntie who called would be ancient.. And BTW
some older people use lots of apps, I probably have more than 100 on my
iPhone. But I can't remember what they are for.. (Just kidding ..)

~~~
Forbo
I realize you're probably joking, but it's possible (common, even?) to have an
aunt/uncle who is younger than you.

------
adamtj
Probably all of it.

------
aboutruby
I think Apple and Google products as they are the simplest without dark
patterns.

~~~
mvandenb
well if you include facebook in that group, they already know everything about
you and can fill in any gaps that you've lost.

~~~
SketchySeaBeast
"I see your seventh grade boyfriend's wife just died, maybe you two should
reconnect?"

