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I Have Alzheimer’s or Another Dementia
What can help more elder dementia patients post on this board?
I think the whole new format of the forum is just too busy. It seems more like a "Facebook" type of thing is which okay for younger people, but us older people, this new format is not user friendly.
When there is forum that is open to people of all ages, people without dementia, people with dementia, the format should be simple and straightforward and universal in accessibility to everyone.
There are unnecessary items on the board, like the Top Authors, why would that be meaningful? Or advertisements for caregiver notebook, Comfort Zone, things like that should be able to be tucked under a tab above.
Good topic, Iris. I'm unusual because I'm one of those older folks.
I'm wondering, if by the time most seniors get diagnosed they are in the middle stage, too far gone to post here.
When you 'young folks' have problems you know it's not simply 'aging'. And you seek answers. Unfortunately, you usually have to fight to get heard.
Until we can educate my fellow citizens about what Early Stage is really like, they won't get diagnosed. Doing this is my 'reason for being.'
Who knows? Most of the time we have no idea why a person no longer posts, unless they have gotten angry and told us so.
Those of us who have contact with patients via a face to face support group can spread the word.
I mention these boards at every Alz Ass. Caregiver's meeting I attend. I am the only one under 65 and used computers at work since their inception in the 90's. I just get blank stares. One fellow said he did use e-mail. Many older people do not use computers. Actually, a lot of the people I worked with don't use the internet all that much.
My dad always said he would like to use a computer, but when I repeatedly tried to show him how to log on he just threw up his hands and said it was too much to remember. He did not have dementia.
To use a computer you have to have:
2. Access to a computer with internet
3. A reason to be on the computer
4. Lots of practice
Remember, we're all in the same boat; and the darn thing leaks!
Personally, I think that many people initially find the boards after first being diagnosed, or have concerns about themselves. They read & participate for a period of time. They find the specific answers and resources they were looking for & poof ~ gone.
I have taken 2 breaks, this is actually the 3rd time participating. First two times I was Spotted Dog. I left because I was overwhelmed with life. Sometimes reading about this disease causes personal stress. So, You don't know, You don't have to think or face it or the possibility.
They may leave for other reasons, i.e. feel it's too busy, slow (not enough meat, too much fluff), complicated, repetitive, not enough pertains to them specifically, takes too much time to scroll through, not enough variety of participants so you read the same things over & over (even between boards) etc.
They may forget their password and it was just too complicated to deal with, or they don't care for the changes.
Who knows, too bad you can't send questionnaire to them after no participation for a period of time to ask why they left. Or send one when they first sign up to ask what they are looking for. What is it that they need?
Consider, Start a new post.
HELP US HELP YOU! ~ If you are reading this & thinking of leaving, STOP! Tell us WHY!
Have you every thought of a good response to a question or comment but did not post it. Why? What stopped you?
Have you experienced problems using the message boards?
Anyway, I don't know if any of this helps, but at least I participated.
Welcome back, "Over her head" ! I remember you (as Spotted Dog) from when I was a newbie.. Glad you came back after your breather. Start a new thread and update us. Why weren't you reincanated this time as Spotted Dog again?
Maybe you can give us a new perspective In fact, you did. You offered some good suggestions that we can pass on.
Iris, yes we did lose some from the old board. Even those that came on over are now not posting. In fact, there are 2 with early onset that I know are gone because of their own health issues or emotional time down. I cross my fingers that they will come back.
One that didn't come over from the old board was PattyCake. Do you remember her? I would recognize her style if she had joined under a new name. No such luck.
She is an example of one who had difficulty logging on unless it was bookmarked/saved for her to have easy access.
Her sister set it up for her on a visit, and but she lives across the country from Patty.
I suspect that we lost her because she couldn't find her way to the new site on her own; and, I watched her disease progress over the last two years.
A new site would have just been too much, I'm afraid. Often wonder how she is; and if she got the help when she transferred to a specialized memory clinic in Texas. I certainly hope so.
So that's the update on 3 that I can remember. The others are lost probably due to reasons that Over Her Head and Bob described.
Good discussion, Iris.
I was a software engineer, started working with computers in the 70s. I never actually used paper tape, but I remember it. I used to program in octal machine code. I've been on the Internet since you still needed a security clearance to use it.
And I find this forum hard to use.
The reply editor works in mysterious ways. In Chrome, the cursor jumps around and I have to enter double line feeds to get it to put a single line between paragraphs. Since I've been told more than once that short paragraphs are better for most folks reading, I see that as a problem.
The decision to disable the password manager is insane. Whoever thought that idea up was not thinking about usability for those of us in cognitive decline at all. They didn't even put an "I forgot my password" button on the login page. So when I forgot my password, I had to create a second account - and then I forgot the password for that as well.
When someone finally got back to me about how to reset my password, I had to try three times before it would work. So how do most of us deal with no password manager to log us in automatically?
We write the password on a sticky and stick it on the monitor. Pretty sure that totally destroys the "wall of security" somebody out there is so concerned about hiding us behind.
Nothing works in this editor the way I'm used to either. I can't figure out how other people get clickable links in their posts - bb code doesn't work, neither does HTML, and it clearly doesn't turn an URL into a clickable link automatically. Other people seem to be able to do it, but I don't know how.
The quote system works oddly as well. I see no way to insert comments into a quote that they won't end up being part of the quote.
There's no "next" link when a topic goes to multiple pages. It took me forever to figure out why certain posts kept popping up to the top with apparently no new posts.
Yes, I know a "normal" person would have seen those numbers in the corners and figured out what they meant with little trouble. However I am not functioning as a "normal" person. Sadly.
I also find it confusing that when you click on a topic, it always goes to the first page instead of the page with the new posts. It's even more confusing when the "new" icon (I assume that's what the little icon next to the title of the topic is) keeps resetting itself even when there is no new post.
It's just plain hard to use, and it is much busier than I think a forum ought to be. I made my living designing user interfaces and I haven't sunk far enough yet where I can't recognize a user-unfriendly interface, especially given the intended clientele.
I was told there is no way any of this is going to be changed, so we're just stuck with somebody's bad idea of how a forum for people who are struggling to communicate already ought to be designed.
Sorry if that's too "complainy" but I do find this forum hard to use. I suspect it'll eventually become too hard to use sooner than I would like.
Your complaints are not new. Would you please copy your post and send it to the administration.
There will be changes coming. I am pretty sure that the administration that deals directly with us AD'ers on the Board is aware of the problems. The techs really thought they were improving things.
I feel that when more money is available things will change.
Let me tell you a story.
I'd only been on the board a short while when there was to be a design shift. We were all asked to come up with a new password. I immediately complained that as unsafe as it was, I always used the same password because I could remember it.
Back came a reply to the effect: of course, what we were thinking! We'll fix it so you don't have to come up with a different password.
I noticed that the Aliz site to manage one's Walk to End Aliz. has a new crazy design this year. They did keep the ability to sign in just once and then all is remembered.
We can hope.
My dad had dementia which caused him to not have sufficient patience to use a computer. So its possible that as the disease progresses this would become more of a problem for users with dementia.
Its been said:
>Who knows, too bad you
can't send questionnaire to them after no participation for >a period
of time to ask why they left. Or send one when they first sign up to ask
>what they are looking for. What is it that they need?
Seems like this could be done, and the results placed on the board some where. The survey could go out to users who haven't logged on for six months. If you got a response, the data would be added to the survey. and posted on a page somewhere on the forum
Hello, just a note to tell you I am enjoying all the posts from all areas of this site so hopefully it will continue.
I am 71, my husband who has Dementia is 74. We both use the computer daily because we worked for 25-30 years using computers. I began in the 70's with punching numbers into a machine then mailing the punched tape to Ohio where they read the punched holes and then sent us our end of month record books.
This was with an automobile dealership in Wayne MI. I don't remember what the process was called but it worked. My love of computers grew as they advanced and I was given the opportunity to train on newer versions.
I believe people my age or older must have worked on computers during their working years or else they will not attempt to use one now, they are afraid of it for whatever reason and also it makes them too nervous.
I use this site but have not suggested it to my husband because I don't know how to talk with him about his illness. He tells everyone he has had a small stroke which caused him to loose his short term memory. He never uses the word Dementia in any way even to the doctors he sees.
Passwords are awful for older people, I know I forget mine if I use a different one for each site I visit so more often than not I use a main one for everything. If you could stop having to use a password, it would help greatly and I so far, do not have dementia.
Thanks everyone for all the love and support.
I'm even older than you and your husband.
Please encourage your jusband to come here.
From my experience, very few older people are diagnosed in the Early Stage.
For younger people, their work problems often cause them to seek help.
For most older people, they and their partners and children attribute their cognitive problems to aging. And so they don't seek medical help until they are in mid stage. It would be interesting to know what the actual statistics are, if there are any.
My purpose in life is to make people aware that there is an early stage in the dementia process and it is the stage where the most can be done to slow down the process. And we have to get the medical professionals who do the diagnoses to steer the people to places, including the Alzheimer's Assoc. where help can be given.
There is now at National a person (maybe, I hope, more) whose goal is to work with the medical profession to achieve just that.