What has happened to the old posts?

KatherineW

Volunteer Moderator
Oct 2, 2007
12,654
London
Hi everyone

Thanks for all your comments and feedback. Several of the comments seem to be around similar themes, so I hope the below addresses most of what’s been raised.

Why ‘separate’ partners and other carers?

The ‘I have a partner with dementia’ forum was set up in response to feedback from a number of members who care for their partners, who told us they would like a place to be able to discuss some of the specific issues that affect them, with others in a similar position.

Having this section is really no different to us having had some of the sub-forums we’ve always had on TP, which recognise the specific issues that some groups of people may have - for example:

- the 'Younger people with dementia and their carers' forum
- the 'I have dementia' forum
- the 'After dementia - dealing with loss' forum.

Also, it’s important to stress that partners do not have to post in the ‘I have a partner with dementia’ forum - just as, for example, setting up the 'I have dementia' forum some years ago didn't mean that people with dementia had to post in there. Partners can still post in the ‘I care for a person with dementia’ forum if they prefer to - or indeed, in any other sub-forum in which they feel comfortable.

Why forums on different stages of dementia?

As I mentioned yesterday, we were very conscious when we worked on defining our new forums that the lines between different stages of dementia can be blurred.

What we are trying to acknowledge with these sub-forums, is that there will tend to be different sorts of issues that will present during different stages of dementia. As such, the main purpose of these forums is to help people find the discussions that may be most relevant to them - for example, a person adjusting to a new diagnosis might find it overwhelming to read conversations about care options, or end of life care.

Again, to reiterate from yesterday: there aren't hard and fast rules about when to post in these forums: mostly, it's about posting where feels comfortable for you, bearing in mind the way forums are described and the types of conversations that are in them.

One of the lovely aspects of TP was so much pooled wisdom from a broad cross-section of people in varied circumstances and I hope this isn't compromised as fear some posts will get overlooked just because users don't access the relevant section or feel it is relevant to them.
You’re right Pheath, this is one of the lovely things about Talking Point, and of course we wouldn’t want to lose the pooled wisdom that is here. The reality is though, that messages were sometimes getting missed in the ‘Support for people with dementia and their carers’ forum, because it was so large and unwieldy, and because conversations covered such a wide range of topics. Also, when we asked volunteers in our testing project to search for particular topics, they struggled, and didn't understand why so many different kinds of conversation were all in the same place.

As I said yesterday, Talking Point has grown a lot since we last updated it, and what worked well for a smaller membership (e.g. having one general 'Support for people with dementia and their carers' forum) simply isn't workable for what is now a much busier and ever-growing TP. The main purpose of having more sub-forums on a wider range of topics, is helping to organise the conversations on Talking Point better, and to make it easier for people to find the information and support they are looking for.

I hope this makes sense. If I've missed a question or if anything isn't clear, please shout and I'll respond when I can. :)

Thanks,
 

Noorza

Registered User
Jun 8, 2012
6,542
I do agree with BE and think that having sub sections for the stages of dementia, when the stages can't be recognised, can't be separated is really to me, a statement that you can recognise the stages as they change. You just simply can't do that.


Am I stupid because I would not know whether to post in the start stage, because she is lucid a lot of the time but confused and angry at other times, the middle because she is now violent and angry a lot more, has had a TIA and her mental health has deteriorated again, or late stage because she has so many degenerative serious health issue which is compounding the dementia that her life expectancy is shortened.

I don't see how a forum can box dementia into stages but at the same time the fact sheets somewhere I am sure will say dementia is different for everyone and the stages can't be defined.

It's contradictory to me anyway. I'd check it out but too busy to navigate my way through to actually find the factsheets now.

Well Said BE again. Your posts are all there though under archive as you scroll down the new front screen, then they'll move it into the new sections.
 

Noorza

Registered User
Jun 8, 2012
6,542
I would be very interested if there was a poll now, then in a weeks time and then in a months time what the results would be. Would people be used to it, will it settle in to new patterns, will we get to like it. The feedback so far is largely very negative.
 

byrnedjp

Registered User
Mar 21, 2013
168
London
new format

Seems to me the changes are of great use to whoever does admin and moderates on this site....nice and clear for them and neatly packaged in all those new headings....If most traffic was generated by the "support for people with dementia and their carers" section surely this is because thats where most people needed help. Has to be some kind of "constant" with people who need this site not for people who run it or moderate.

Its like throwing 6,000 marbles at the screen and telling people to get used to it.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,390
Kent
I would be very interested if there was a poll now, then in a weeks time and then in a months time what the results would be. Would people be used to it, will it settle in to new patterns, will we get to like it. The feedback so far is largely very negative.
It`s par for the course. Many people are resistant to change but it usually all comes right in the end. :)
 

Big Effort

Account Closed
Jul 8, 2012
1,928
I take the comments on board.
I am pro change. Beneficial change.
I contribute to TP, not as an entity, but to the people on it.
These people are now being divided into categories.

Example.
I am off to visit a care home for Mum.
This afternoon.
I could put it under Difficult Emotions, because I am in bits. Really upset.
I could put it under Late Stage and Death section - but this feels wrong.
I could put it in moderate stage, buy why there?

When I write, I write to people. Not stages. Not categories.
What I savoured was talking to newbies. Welcoming them. Why? Because I am NOT a newbie.
I also savoured doing what I could to support people dying (talk of Carara and Pied), why? Because I wanted to show empathy.

TP is about Connecting. Communicating. Support. Empathy. Sharing of Experience. Holding out a hand. Ask people why they connect.

This format makes us about Stages. Carer or Partner. Early, mid-stage, end-stage.
None of these technical labels corresponds with why I post (see above).

Look at the titles of threads.
Continence issues. Eating issues. UTIs and so on.
Have you seem many threads saying "I seek the advise of partners, carers please keep quiet?"

I accept the need for different sub-sections, due to volume. Just let the old format run alongside, until we can habituate.

I want to post. Don't know where. And my friends (both carers, partners, people with dementia) won't be able to find me.

So sad about this amdinistrative decision.
All the best, BE
 

Noorza

Registered User
Jun 8, 2012
6,542
Do you think it could be that we complain if we don't like something but if we do like it we just quietly get on with it :)
I can't remember which thread I put it on but it would be very interesting if the mods posted a poll spaced at a day in, a week in and then a month to see how people are adjusting.

I feel it would be a brave mod who would do that at one day in.

Another brilliant post from BE.
 

Pheath

Registered User
Dec 31, 2009
1,096
UK
Dear Katherine
Many thanks for responding to some of the issues raised about the new TP format. I do take your point about TP becoming unwieldy and perhaps needing some restructuring. However I’m still not sure people will be certain about posting in the stages forums and feel there will be overlap here with the general section although can concede that maybe there’s a case for creating sub forums for ‘Newly Diagnosed’ or ‘End of Life’. I can also see that creating sections for specific problems requiring purely practical advice that are asked about frequently eg. Continence Products, specific health problems, could be helpful as well as the sub categories that have always existed. However for issues of a more emotional nature for ease and simplicity feel only one area is needed. I fully take on board that the moderators need something that is workable also and realise you’ve a massive job to do trawling the threads but perhaps you could take on board our feedback and be open to any further tweaking or refining if needs be in the near future.
 
Last edited:

KatherineW

Volunteer Moderator
Oct 2, 2007
12,654
London
Hi Pheath

Thanks for taking some of my comments on board. :)

I fully take on board that the moderators need something that is workable also and realise you’ve a massive job to do trawling the threads but perhaps you could take on board our feedback and be open to any further tweaking or refining if needs be in the near future.
We are keeping track of all feedback from members and are of course open to making further changes later on, if they are felt to be appropriate. I'm very willing to acknowledge that we won't necessarily have got everything right straight away - so some tweaks may well be needed. As I said yesterday though, it's important that we let the dust settle before making further changes - otherwise we could be in danger of making knee-jerk decisions, rather than planned ones.

Thanks,
 

Pheath

Registered User
Dec 31, 2009
1,096
UK
Thanks again Katherine, reassuring to know our feedback will be taken on board. I quite understand you need to process all our suggestions and then think about about how to revise in a careful and considered way as you naturally want to keep the number of major changes to the site to a minimum.

Finally, if there was an official thread specifically for constructive feedback about the new site that might be helpful as not sure how many people are coming into this general Welcome section or at least a way of signposting them here. Appreciate you listening and keeping an open mind.
 
Last edited:

KatherineW

Volunteer Moderator
Oct 2, 2007
12,654
London
One other thing that I wanted to clarify:

There have been a couple of comments suggesting that we have made these changes so as to make the forum easier to moderate, and I'm disappointed that anyone would think this was the case. If we were looking for an 'easy life' when managing Talking Point, we'd probably never change anything. ;) Plus, the new structure is not without its challenges in terms of moderation (for a start, there are more sections to keep track of, and a lot of discussion threads to move).

The changes we've made have been very much with the interests of our members - and guests - at heart, and the rationale for each one has come from either user testing that we've carried out, direct feedback from members, or a combination of the two.

I hope that's clear but as always, please do come back to me if you have any questions.

Thanks,
 

Noorza

Registered User
Jun 8, 2012
6,542
One other thing that I wanted to clarify:

There have been a couple of comments suggesting that we have made these changes so as to make the forum easier to moderate, and I'm disappointed that anyone would think this was the case. If we were looking for an 'easy life' when managing Talking Point, we'd probably never change anything. ;) Plus, the new structure is not without its challenges in terms of moderation (for a start, there are more sections to keep track of, and a lot of discussion threads to move).

The changes we've made have been very much with the interests of our members - and guests - at heart, and the rationale for each one has come from either user testing that we've carried out, direct feedback from members, or a combination of the two.

I hope that's clear but as always, please do come back to me if you have any questions.

Thanks,
Katherine I do appreciate that you are doing this as a volunteer, giving up your time and since yesterday have had your hands full. I just wanted you to know that even though I am very sceptical of the changes, I value and appreciate the work the moderators and other volunteers on here do because it has kept me as sane as it is possible for me to be.

I would like to personally thank all volunteers.
 

Noorza

Registered User
Jun 8, 2012
6,542
I've seen a few posters who prefer it, most though are expressing their concerns. I have started a thread in the tea rooms to thank the volunteers as I think they've had a hard day and a half. I am guilty so wanted to make amends while standing by the posts I've made.

I don't want volunteers to feel it is personal and Katherine's last post concerned me. We have to remember they are doing this for free. While it is fine to feedback even negatively appreciation of their work should be expressed too I feel.
 
Last edited by a moderator:

KatherineW

Volunteer Moderator
Oct 2, 2007
12,654
London
Katherine I do appreciate that you are doing this as a volunteer, giving up your time and since yesterday have had your hands full.
Thanks Noorza, although I should clarify that I am not a volunteer. Myself and Serena are both members of Alzheimer's Society staff, so it's our job to look after Talking Point.

Our hosts and moderators - who have also been responding to members' questions and concerns following the updates - are all volunteers however. They do a tremendous amount to support the forum and its members, so I agree, it's good to recognise that. :)

Kassy and Jeany - it's good to read that you feel positively about the changes. :)

Thanks,
 

Izzy

Volunteer Moderator
Aug 31, 2003
60,504
Dundee
I have no problems with the changes either. I think we also have to remember that many people have not commented either way.
 

Saffie

Registered User
Mar 26, 2011
22,506
Near Southampton
I usually go to the New posts, now Recent posts or today's posts anyway, so that's fine with me.

I do like the fact that there is a seperate forum for partners of dementila sufferers. Although I am always happy to help members with parents with dementia and my mother suffered from AD over 30 years ago, there is a world of a difference in the emotions invloved and the impact on one's future life - what's left of it.

The rest, I will get used to in time no doubt.
 

KatherineW

Volunteer Moderator
Oct 2, 2007
12,654
London
Finally, if there was an official thread specifically for constructive feedback about the new site that might be helpful as not sure how many people are coming into this general Welcome section or at least a way of signposting them here. Appreciate you listening and keeping an open mind.
Hi Pheath

We're keeping track of the comments and feedback both in this thread and in the other thread about the changes. There's a global announcement that links to the changes thread, too - so hopefully members will find their way to it. :)

Thanks,
 

Noorza

Registered User
Jun 8, 2012
6,542
Thanks Noorza, although I should clarify that I am not a volunteer. Myself and Serena are both members of Alzheimer's Society staff, so it's our job to look after Talking Point.

Our hosts and moderators - who have also been responding to members' questions and concerns following the updates - are all volunteers however. They do a tremendous amount to support the forum and its members, so I agree, it's good to recognise that. :)



Kassy and Jeany - it's good to read that you feel positively about the changes. :)

Thanks,
I still appreciate the fact that you have chosen a career to help those caught up with dementia.