Thank you for taking the time to read this; your public-facing support team is to be commended. I am also grateful that you might take it seriously given the effort it took. For reasons that will become obvious I will only have the chance to do this once. You have it within your power to help literally millions of Americans (people really but its only Americans I have stats on) using mostly-existing technology you have as of this writing. Explaining this is tough so I will get right to the point.
Who am I?
My name is Jeff Cobb, a now-disabled software engineer from basically all over, even interviewed with you once but Sony got me. Not important, I am sorry. I only say that because I will be trying to express some ideas and it would be easier from an engineering or software dev standpoint. The reason I am disabled is the same reason you really should listen when I say these things. I was diagnosed a year ago with Lewy Body Dementia, or LBD. In short, it is conceptually like a cross between Alzheimers and Parkinsons diseases, with some special features thrown in to keep it interesting. One of those special features I am turning to my (and hopefully others) advantage is that where the progression of dementia in Alzheimers and eventually Parkinsons folks happens in a fairly linear manner, for LBD we cycle in and our of dementia several times a day. Until you get a diagnosis, its some seriously crazy stuff to contend with.
Once diagnosed I realized two things: 1. When I am in an up cycle or able to type things like this, I could also not only peer into my down cycle and report back. Neurologists love that part because I can explain dementia from the inside, whats going on behind grandpa (or mom or…) eyes. Yes we do trend to houseplant status over time but for now and the rest of my semi-useful or aware life, I will be mostly sane and then mostly demented and then sane and then demented again every few hours to a day.
The other thing is why I write folks, the software engineer in me can see many ways that are completely untapped right now to help anyone with dementia and Alzheimers alone had 17 million patients last year. LBD is second and Park is third most common dementia due to degenerative disease. I really don’t care if you make money with this or not, its the right thing to do and to be CFB, I want no money for this. I am not rich but I have about 18 months of a semi-useful mind left and would love nothing more than to know that someone took this stuff seriously. Maybe they have a dad or grandmother with AD, it doesn’t matter. Since I can “see” this stuff, I don’t want to take the knowledge with me. If you at least give it an honest read (and try to understand my words, the dementia is still dementia and makes coherent thought really hard) I will be happiest of all. I will do my best to keep on task but if something is unclear, please ask, I really want make sure all is clear.
As I have stated, now that I am pretty foggy/demented everyday, I can clearly see things that could help SO much, one of which I will state for the record (if he had it then) would probably have saved Robin Williams. That may sound boastful, in which case I wish I had worked for you. Sony took me seriously. But seriously or not, I will wager that once you read that point, you will agree that it is probably true.
So with no further preamble, here are my suggestions of ways both simple and complex to help millions of people with dementia. In no particular order:
* Personal Wiki or Database Integrated with Google Home. How does this help the demented? As you know the degenerative stuff happens over time and in fact this early period between being a little batty and completely under adult supervision 24/7, this period is called the MCI or Mild Cognitive Impairment period. It sounds nice until you realize what comes next can only be SEVERE Cognitive Impairment. I digress; anyone with a grandparent with AD will immediately get this. While the patient is in the early stages, they are still pretty coherent with only specific issues or impediments. This is when they both know there is something wrong and have forgotten the least. It is at this point the whole game for the next several years for these people gets changed.
You use the STT in Home (or any solid STT) to allow the dementia patient to be able to speak facts, memories, what-have you into Home which will use AI to draw relations and enter this info into a browsable database or a personal wiki. This alone would help so many, being able to save personal information for a rainy day. Personal history notes, names of friends, colleagues, memories of home, and more. Anything that makes this person who he or she is.
While the patient is the primary “data entry” person, the caregiver must have some form of edit capability.
The payoff is as the disease and dementia progresses, the patient starts to forget names, places, things from home, anything is fair game but if most of that info is a question away, that dementia patient gets to hold on maybe a bit longer, maybe a lot. Street address, who to contact in an emergency, phone numbers, etc are all accessible via Android phone which is of course linked with the Home network. Thus if the inevitable happens and the dementia patient gets separated from the wife/caregiver in public (a strange place), that patient isn’t alone, they have immediate access to everything that person would normally know and be able to help someone help them get found. In fact that are a myriad of ways this info and access could be used to help the dementia patient, from quickly being ale to put names to faces (and vice-versa) to in general, exercising their memory, something shown to extend the MCI or last period of clarity. This is something I wish I had. As my dementia worsens, I am struggling to write down everything folks need for when I am gone (we have an intense network, two married geeks, you know how that goes) but also just stuff about me so my wife will have a better reminder than a video tape for when I have reached room temperature.
* The most logical extension of the above, Google Demented Glass: Sorry, could not resist but when I see this greater system in operation, I see the previously-mentioned DB or wiki well-populated and the patient wears something exactly like what I recall Google Glass was. In this case, the patient can use Google Glass to retrieve information in realtime for private display so next time grandma can’t recall her grandkids names she can query GG and retrieve the info from the DB, at which point she sees a picture of Grandchild #2, Sally (or something) and at once the patient avoids the embarrassing and disheartening situation of forgetting supposedly-dear things. Going through this myself, the Utopian solution is a Google Glass-like interface to this information which would allow me to do a lot a can’t or won’t do now. This DB has to be kinda free-form to be able to do simple image recognition but if it has that, and this integration, the user/patient can stare at the object that confounds them and asks for help, at which point GG can retrieve and display the news that the object is The Coffee Maker and either a set of instructions on use OR a reminder not to use, get a caregivers help. This alone will keep dementia patients far more independent (and less dependent on others) for a longer time and with all this info at-hand, the user will be of a way better state of mind most of the time feeling like they are still a part of things. Without this or something like it (as things are now, in other words), we feel more and more like failures and more and more isolated from the rest of the world. Many dark days and then death. Sorry but thats the news; I can’t change it and all of the neuro-degenerative diseases tend to end up this way. On the other hand, if the patient has a helper such as this these years need not be so dark, with the GG→Home→wiki/db providing a daily crutch for the user/patient keeping them mentally “going” for much longer. There are many ways this can help anyone with dementia, particularly if you catch it early enough. If you want an exhaustive list I can provide one by taking 24 hours and documenting the ways it will be used. I do that now, really. I was an engineer a good long while and tend to think that way.
* Smaller scope item: An Android-based speaking assistant. I actually have a version of this done but my brain went south before I could complete. Not a big deal, in my old life it would be a prototype in a day and shippable in a week, and I don’t have your resources. Who is this for? One common and very debilitation symptom of LBD and many others is called “aphasia” or difficulty communicating. I am sure you have seen the rather ridiculous examples from TV of either garbage words or simple word-swapping but there are actually 15 kinds or classes as defined by the National Institute of Health. The type this would help is the most-common, expressive aphasia or problems speaking. This encompasses a lot from rhyming words to something more severe like that of Stephen Fursts character in the Dream Team that only spoke from television “clips” or samples. My own is actually closer to that than the simpler ones; with mine the whole idea gets scrambled and yet intelligently reordered on the way out. Upshot is I sound normal and my words are “my words” but nothing like what I intended to say. Very frustrating and if I had a spare 50 grand I would pay someone to make this because this has real-world utilitarian uses for me right now.
The key thing here is to remember that more than just a speaking assistant such a product could defeat many kinds of aphasia. To approach I was taking and was working was to bypass the usual channels the brain uses to express thoughts and ideas and to use a non-standard (but maybe far more intuitive for the patient if done right) and unlike soundboards which tend to use fixed and static data sources to speak, this one should allow the patient to construct or assemble far more complex thoughts than is capable with a sound-board like device but using conceptual modules to build more complete and non-trivial thoughts, which could then be flawlessly expressed as speech by Google Voice. I think another way to look at it would be a real-world use-case for any dementia sufferer. Say for example I need to go to the local home repair superstore to get a replacement for my garage door opener. Before I go I sit down with the app on the phone or tablet and start by touching the “need” icon,
* Caregiver/patient Android bonding. This is really small on your side but would have a massive impact on the caregiver/patient relationship. The first thing to make clear is in almost every case, patients and caregivers are usually family members, husbands and wives, mothers and daughters etc. so there is already an implied familiarity between them and the patient comes to rely on them more and more as time goes on. So if there was a way to bind two Android phones in such a way:
– When the caregiver is gone for a few hours, it is often the case the dementia sufferer loses track of time and then forgets where the caregiver went and then panic sets in and usually nothing good results of this. Very common but right now my wife and I do location sharing thru Maps which fixes this by assuring me she is on her way home or she is at the store buying food or whatever. This really helps not just me but other LBD patients I know as well. The only fly in this particular ointment is usually when we forget things like that, we are too fogged in to sort out to run maps to check her GPS location. On the other hand, if it were configurable when the caregiver was outside some range for more than a few minutes a notification could be sent to the patients phone and if set up correctly the notification would remind about the trip to the store. However the actual map with location should be a single tap away.
This binding could also help keep a kind of digital “leash” on the patient if taken out in public and they start to wander off. Finally if the patient was lost in a store for example they could just touch the notification (or her icon on the map; needs to be bigger) and a phone connection could be initiated.
These are things that could really help anyone with dementia....you folks could do an amazing job...
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