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What can help more elder dementia patients post on this board?
Iris L.
Posted: Wednesday, July 25, 2012 10:14 AM
Joined: 12/15/2011
Posts: 18222


I'm concerned that so few over 65 years old patients post on this board.  Is there anything we can do to help more elders post on this board?

Iris L.

KML
Posted: Wednesday, July 25, 2012 1:39 PM
Joined: 11/30/2011
Posts: 2105


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.

 

 


Iris L.
Posted: Wednesday, July 25, 2012 6:16 PM
Joined: 12/15/2011
Posts: 18222


KML, all the items you mention were noted early this year after the new board came in use.  We members have no control over those items. 

I wondered if there was anything we patients can do to get more older patients posting.  Many younger patients are posting on the YOAD board.

Iris L.

Mimi S.
Posted: Wednesday, July 25, 2012 7:09 PM
Joined: 11/29/2011
Posts: 7027


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.'

 


Iris L.
Posted: Wednesday, July 25, 2012 10:12 PM
Joined: 12/15/2011
Posts: 18222


There used to be more over 65 posters on the old board who were in early stage.

Iris L.

Mimi S.
Posted: Saturday, July 28, 2012 4:33 PM
Joined: 11/29/2011
Posts: 7027


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.


Be Strong 2
Posted: Saturday, July 28, 2012 4:55 PM
Joined: 12/14/2011
Posts: 1751


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:

1. Desire

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!


Bob  




Iris L.
Posted: Saturday, July 28, 2012 7:34 PM
Joined: 12/15/2011
Posts: 18222


You're right many over 65 are not comfortable with the internet and message boards.  But there have been several new member over 65 who made introductions this year, so there are some who are familiar with the internet.  I just wonder why they did not come back. 

Iris L.

In Over Her Head
Posted: Sunday, July 29, 2012 5:04 PM
Joined: 5/13/2012
Posts: 2


Hi There,

 

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.

 

 

 


Iris L.
Posted: Sunday, July 29, 2012 8:19 PM
Joined: 12/15/2011
Posts: 18222


Thank you for responding, In over her head, and for your suggestions.

This board will be what we patients make of it.

There are many posting on the younger board, not so many on the older board. 

The reason I believe these boards are so important to patients is because there is not much information and encouragement for patients in the real world. 

How are you doing?  Can you give us an update on a new thread?  I'm glad you came back and hope to see more of you.

Iris L.

Geegee
Posted: Monday, July 30, 2012 2:09 PM
Joined: 11/29/2011
Posts: 514


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. 

 


Zen
Posted: Thursday, August 2, 2012 3:09 AM
Joined: 7/14/2012
Posts: 55


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.


Iris L.
Posted: Thursday, August 2, 2012 7:34 AM
Joined: 12/15/2011
Posts: 18222


I hear you, Zen.  The points you brought up have been made since the new board transitioned in December 2011. 

The changes were made to make it more like Facebook in order to attract new caregiver members, without thinking of how these changes would affect patient members. 

I "bold" my text because the text is too faint for my eyes.

Iris L.

Mimi S.
Posted: Thursday, August 2, 2012 9:12 AM
Joined: 11/29/2011
Posts: 7027


Hi Zen,


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.


Myriam
Posted: Thursday, August 2, 2012 12:47 PM
Joined: 12/6/2011
Posts: 3326


As you may know, the Alz Assn was originally set up to help caregivers only. Providing services to those of us who have dementia is fairly new, maybe only in the last 5 years, so it is a change in their focus. It does take time to change a culture, but I believe they are committed to understanding our needs.
Iris L.
Posted: Thursday, August 2, 2012 8:40 PM
Joined: 12/15/2011
Posts: 18222


I was on the old board for three years and it was very user-friendly for a cognitively impaired person, even before medications.

Iris L.

bo_dance
Posted: Friday, August 3, 2012 3:07 PM
Joined: 6/1/2012
Posts: 9


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


Iris L.
Posted: Friday, August 3, 2012 3:45 PM
Joined: 12/15/2011
Posts: 18222


Thank you for your insights, bo.  On the old board there was a mechanism to do polls, but not on this new board. 

Please continue to post and let us know how we can help you.

Iris L.

Geri
Posted: Tuesday, August 28, 2012 5:26 PM
Joined: 8/23/2012
Posts: 287


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.

 

Geri

 

 


Mimi S.
Posted: Tuesday, August 28, 2012 7:28 PM
Joined: 11/29/2011
Posts: 7027


Hi Geri,

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. 

 


Zen
Posted: Thursday, August 30, 2012 12:38 AM
Joined: 7/14/2012
Posts: 55


Geri wrote:
   He never uses the word Dementia in any way even to the doctors he sees.
 
I don't like the word either, not when it was applied to my dad, and not now that it's being applied to me. 
 
 I suspect its because there's such stigma attached to the idea of being "demented", ie actually crazy, eg some form of psychosis - which is not at all what it means in the world of psychology. 
 
 I know it's the "proper" technical term, but its so loaded, even for professionals, that I wish they'd stop using it altogether.  I'm not sure what to replace it with - cognitive impairment?  I don't know. 
 
 But he's not alone in hating that word, "dementia", and for me, at least, it's not because of its actual meaning, but the IMPLIED (and actually incorrect) meaning.
  
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.
 
If they'd just allow the password manager to work and save our passwords, that would be good enough for most people.  You only have to set it up once that way. 
 
 But in a fairly detailed conversation with the tech staff about this, it was made VERY clear to me that they will in no way even entertain the idea of enabling the password manager. 
 
 They think they are protecting us from something - which, given the condition of those of us who HAVE Alzheimers - just means we end up writing the password down and sticking it on the monitor, or keeping it out where other people can see it anyway.  That's a LOT less secure than having password manager keep it for us.
 
Heck, I can't even get help trying to figure out why I can't get a clickable link to work in these posts.  Other people can get clickable links to work - but nothing I've tried works.  BB code doesn't work; HTML doesn't work; and the site software doesn't automatically insert the code for the link for an URL properly started with html:// as many forum software packages will do.
 
They actually tried to say it was because I wasn't using Firefox or Explorer (which I am) - the problem is with the programming.  If they haven't programmed this editor to correctly handle HTML, it's not the browsers fault.  (And I AM using Firefox, v3.6.xx on Win95 on my netbook and FF 14 on my Vista desktop).
 
Anyway, I ramble.  I haven't seen a lot of willingness to consider the needs and wishes of the users, sadly. 

 

 

 



 
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