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How would you change AlzConnected if you could?
There used to be many more posters. Up to 50 threads on the Caregiver board each day. There used to be more Peer Volunteers. This used to be the best site on the entire internet to learn about what to do for PWDs. The outside world has nothing for us patients. We learned what we needed from our peers and the wonderful care partners who share their experience. I wouldn't be where I am today without the members. The best advice is given here. It truly is a shame that more use is not made of these boards.
Here's the deal, the major problem is the ancient nature of the forum's design. There is just so much that you can't do with this site. So many people are now used to forums that have convenient features.
If you can't navigate it comfortably, you just move on.
You can't post pictures without great difficulty and they aren't sized to where they can be viewed in the format intended. No like buttons has been mentioned. That's like forum 101.
There are entire sections that are ignored for lack of interest. Couldn't relevant subjects be found? They need to be changed and updated according to what is needed.
The masses are more sophisticated and the relevance of the issues that the members are going through need to be current. Visitors are not only going to want to read about Alzheimer's and dementia but are going to want to know how brain illnesses and damage relate to other illnesses like Borderline Personality Disorder, Schizophrenia and Bi-Polar.
You may not see the association, but mental health issues are linked to each other in ways that can't be obviously seen. Families and social groups don't necessarily know the distinctions in mental illnesses. Also, having something personal happen to you in the area of mental health makes you curious about the other disorders and how they connect.
But also you would need more savvy moderators that could understand the new viewership. If you look around at the people who depend on internet for social interaction, you will see they are of a more forward thinking mentality (Their attention span and sense of humor for example).Brain diseases are not just for people in their 80's anymore. I doubt there are many that can relate to the word senility.
I'm in my sixties but I feel like a teenager here. You gotta keep up with the times.
Despite some design flaws that may exist, these boards are still an invaluable resource providing information and support that are not available anywhere else. What makes the boards work is the sharing between members who have actually been in the trenches of dementia living and dementia caregiving. The experienced members here know more than most of the professionals that we pay to advise us. That has been my experience.
FWIW, every time the board is updated, some members get locked out and they never return.
Well, it's said that the seven last words of any business is, "It's never been done that way before."
I guess you're thinking some people will leave and not be served, but there are people out there that will never be able to join and be served.
If the trajectory of the site is satisfactory, then this is an unnecessary thread.
I first joined this forum under a different name over 2 years ago.
I like all the suggestions already given.
I would like to add that “Musings” section seldom if ever has anything to do with PWD or caregivers. This section also has the most posts removed by the mods. I have seen several folks leave this forum, including me over some of the posts in Musings.
What purpose does this section serve? How does it help folks stuggling?
Maybe I look at this in the wrong way, and this section is simply for trying to see how creative or outlandish you can be on posting?
Just my two cents worth.
Have a great New Year.
I suppose that some change might be good here, although it has seemed to me that most changes that take place on websites mean that something I used to be able to do easily is now more difficult, or even impossible. Andy, thanks for your 2 cents, but I think that what you're saying is that Musings doesn't do what you want it to. And as for getting with the times, not everyone wants or needs the latest and greatest in technology. I bring my own set of problems here, as Barbara's caregiver, and I look for ways to help both of us cope. I am aware that the Musings venue has been a problem for some in the past, but it has also been of great value.
I think I'll stand with Iris on this one.
I approve this message.
Not really. Plus, who cares what I want, whats important is what those who are hurting want. Again, how does this section help in dealing with dementia? Lets be honest here, approx 90 percent of all posting is done by one person, and seldom if ever are their comments geared towards dementia.
I will say that the other 2 or 3 people who do post on here, apparently my concerns are really not a big deal, so it might just be me, and Im ok with that.
Just voicing my opinion.
I have no idea on how to technologically improve AlzConnected. I am not computer savvy.
The muses in Greek mythology were the nine goddesses, daughters of Zeus, who presided over the Arts, Music, Literature, Science. I am glad that AlzConnected has provided us with this musing board for us to have an opportunity to ponder, to meditate, to muse about the one and the many.
When I click on Musings, I enter the e-realm of the muses. And I encounter each of you. In your own unique way. When I electronically sign on, I enter a mouseion. A place of study and introspection. I bow my head. and I read attentively, thoroughly, carefully what each one of you, my muses, have chosen to share. For me, you are a source of inspiration. And guidance. In all fronts.
I do not write often. But I've been visiting this Agora for many years. And, the gods willing, I will continue to circulate among you, for many years to come.
You are people of great courage. Special human beings in an odyssey. Heroic people. Beautiful. Warm. Caring humans. Good people. And an example to me.
chrisp1653 said "I bring my own set of problems here, as Barbara's caregiver, and I look for ways to help both of us cope."
Well said. I think that is the basic and most valuable function of the alzconnected board -- providing ways to help us cope, through connecting with others. The boards do that for me.
And...there could be a simple search function.
Glory Hallelujah! You couldn't say it better, Miss Her. You and I are of like mind. We all need a break from rigidity. That's why I came to Musings. To divert my mind from the rigors of care-giving. To think wonderful thoughts. About the goodness of life. --Jim
For me I would change nothing because I live in gratitude now for those who were here for me when I needed to be heard and understood..and this message board helped me help my husbands mom..and helped me know I could meet her needs and keep her safe with love in my heart for her during her journey of memory loss.
Thank you Alzheimer's Association for this message board.
I don't think political or religious threads or posts should be allowed and this should be formally stated in the rules and strictly enforced. Just not the place for this, even in Musings.
I also think that the moderators should just outright close the threads that start out well- intentioned but then become derisive. Don't do what they do now; which is to delete certain post(s) that they deem offensive but continue to keep the thread open which inevitably leads to more nasty posts.
Try to concede, Judith, that many problems and pertinent issues in
life. Are not adequately addressed. Because people would rather steer clear,
period. Than face the sensitive complexities
of life. Head-on. Too often, the most appropriate places are labeled ‘inappropriate.’
In order to inappropriately stifle discussion. --Jim
I have been worried for some x about George K..and I have posted to him a couple of times on the caregiver part of the forum and he has not answered me which is not like him not to answer..I so hope all is well with this precious man as he has made my day many times when I needed to read his words of HOPE which he gives everyone.