Please Comment: Care Guide for Alzheimer's & Dementia Caregivers

[ChristianElliott]

Hi All Community Members,

Can I ask that you take a look and comment on the following:

I want to provide a simple method to create a non-medical care guide for people living with a diagnosis of Alzheimer's or other dementia.

The intent is to create an "owner's guide" of sorts for family and caregivers of people living in the later stages of the condition, when verbal communication may not be possible.

This is a first draft, so your suggestions and feedback are valuable. Start by filling out this form: fs30.formsite.com/mybrainte...

After submitting the form, you will receive an email with a pdf report attached - the draft version of what a basic care guide could look like. As above, your feedback and suggestions on how to structure this guide are welcome.

Thanks for your time on this, and please use "reply" to this message to begin any feedback.

All the best, Christian

[jeffcobb Ambassador]

Greetings. Just filled out the form and submitted. KInda not sure what to put in which fields. The questions are more or less straight-forward, no worries there. Its just that from the context of the questions I had the impression the answers were being massaged into a kind of owners guide, to use your terms. Because of that I worded stuff as I thought might help that but in truth, this is something I need to fill out once and review the output, and then re-fill it out once I see exactly where it is going, to be the most useful. Perhaps a examples of a filled out form and the resulting PDF might give some insight on providing better answers.

[jeffcobb Ambassador in reply to jeffcobb]

Sorry to be a geek and reply to my own reply but wanted this attached to that...and please understand even though I might have words, my aphasia means the intent or meaning can get lost on the way to my mouth or fingers in this case. So if this doesn't make sense, ask me. OK after reviewing the output i was correct in thinking the way the questions were answered would have an impact on the resulting documents effectiveness. I am not sure how to word this but can I suggest slightly altering the ...dang it...these days, words are like money, you never have enough or the right ones. OK let me try it this way, sort of example. The document is like a mini-instruction manual for a temp caregiver, I get it, cool idea. Might even have helped me last week. However, the tone/theme/whatever of the questions almost make it feel like a general interview (eg "Jeff you just won the world series! What will you do now? Go to Disneyland!")....maybe slightly rewording them to elicit responses more in the tone needed for such a manual. I know I am not making sense so let me think on this, maybe an example will explain the thinking better than my words.

Soon.

Jeff

[ChristianElliott Partner in reply to jeffcobb]

"The document is like a mini-instruction manual for a new (or temp) caregiver, I get it, cool idea."

Yes, that's the concept I had in mind. I see your point on general vs specific questions on the form.

Also, giving users a chance to preview and edit/revise the guide online is a good idea. I'll look into adding that feature.

Thanks!

[jeffcobb Ambassador in reply to ChristianElliott]

Query; is there a way to take it more than once (ie doing better answers this time) or are we locked out of the DB? Actually, something I implemented maybe you could add as a feature....allow me to explain.

Aside from the other cognitive issues I have, aphasia is bad at home and worse in public so the sad joke is, I could explain to them that I can't talk right if only I could talk right. So we printed up some basic cards in the beginning, one side basically a "if found, return this person to..." and the address. On the other though was listed a few fundamentals, I have LBD, I have cognitive and speech issues, speak slowly or contact my wife/care-giver at XXX-XXX-XXXX. This worked great until a trip to the ER for something and the pain from what I was there for basically eliminated coherent speech for me so after that fiasco, my med-list was added. Then the list might change or a new issue shows up. So being the engineer-couple we are and have been since Moses was doing his first SMS, we made a quickie DB that would allow me to edit and then regenerate the card template. Then I could either print my own or send it off if need-be.

in your case, say you kept a DB of the answers and the patients/caregivers had a key, if for any reason they are out or in unusual circumstances and needed to convey that info, a simple lookup on a smartphone, tablet, etc would allow a patient to display that info for a surprise caregiver or say doctor if the caregiver isn't there, lots of applications for this. Then as issues/conditions/needs change, the caregiver and/or patient can update the data online and regen/reprint the doc. Also that resulting doc would be a great thing to keep on a keychain drive. We each keep a secure keychain drive with us, custom encryption, etc with most if not all of the medical stuff we need to keep handy, like my wifes med list which is a mile long. Short medical history, contact info for key people in the medical care teams, etc. You get the idea. Its just nice having it handy and I can decrypt on my phone or tablet (about the last thing I did before my brain fried to the point making software just isn't an activity I can do anymore) as-needed. I am also keeping one of those Adult Push-N-Say things on there too but man I hope there is a better one before I actually need it.

Man I got side-tracked. Hope something above helps.

[ChristianElliott Partner in reply to jeffcobb]

Yes, this can be moved to a DB, which is where I'm already heading. Consider the form-only approach above to be an alpha proof-of-concept.

I will carve out some hours this month to work on this. Stay tuned!

[jeffcobb Ambassador in reply to ChristianElliott]

Sorry dude, wasn't trying to load you up. Its just the engineer in me; if it doesn't exist I try to invent it and if it exists I try to improve it. Its messed up because I no longer have the capacity to actually do any of that but the drive in my gut says GO GO GO!

[ChristianElliott Partner in reply to jeffcobb]

All insights, based on your software development background & experience are valuable. Keep them coming.

Also, I have several plates in the air, so don't worry if it takes a day to respond.....

[jeffcobb Ambassador in reply to ChristianElliott]

Actually I wish I had a few hundred grand or access to volunteer development help. While I can no longer code this stuff myself I used to write for all kinds of non-standard PC devices including watches, game machines, etc. Anyhow since this has set in with me, I can see a handful of apps that could really be of help to dementia patients like myself, stuff I don't see out there yet....but by the time I find someone or some rich uncle I never heard of kacks and leaves me $$, I will forget what they were.

[jeffcobb Ambassador]

BTW tks for posting, I was starting to feel kinda weird....