Alzheimer's carers website

darylfitzsimons

Registered User
Nov 16, 2011
2
0
Hi,
I'm currently developing a website specifically for the family members and carers of Alzheimer's patients . The intention of the site is to provide family members and carers with a space to communicate with each other, share tips and advice, support one another etc. I hope to give a voice to those affected by this terrible illness.

I'd love to hear your feedback and opinions on the site, what you think it should and shouldn't include, and any way that the site can help in making the lives of those effected as painless as possible.

Thanks,
Daryl.
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
Forgive me but what do you think this is?

I realize this sounds a trifle rude, and I'm all for as much support as possible but it seems a rather odd question to ask on an existing support forum.

To answer your question look at this website.
 

grove

Registered User
Aug 24, 2010
7,714
0
North Yorkshire
Hello & agree with the other 2 Replies , well said both Jennifer & Sweet Pea :)

There is NO POINT at all in having another Web Site ! , think it would cause upset & :confused::confused: all round

From Grove x
 

sussexsue

Registered User
Jun 10, 2009
1,527
0
West Sussex
Hi Daryl

Like the others, I was a bit taken aback.

I am sure you have come here with good intentions, but maybe you have come on here for research and a bit of reading this forum it will soon become clear that TP is an excellent already established forum and I doubt any of us are looking for another one.

However I dont wish to be totally negative and maybe an alternative would be a more localised forum for people in your area. The downside of this of course is that it would be harder to remain anonymous.

Another great thing about TP is that it is used by both carers and sufferers of dementia, which gives us all a greater insight into how it affects all people.
 

Tender Face

Account Closed
Mar 14, 2006
5,379
0
NW England
And forgive me ... but why should AS have a monopoly on website/forum support for dementia carers? :confused::eek: (They don’t anyway, actually!)

I personally would like to know a lot more of Daryl’s ideas and plans ......

We surely can’t knock any new avenues of support springing up??????

Sure, perhaps one of the best ways for Daryl to look at what people want from an online support site is to look at what they feel they DON’T get from TP ... but most of those comments would contravene TP T&Cs anyway!!!!! :rolleyes: Perhaps Daryl could ask some specifics and ask for response by PM?

I am not saying it is a good idea or bad idea – but until I learn more – I ain’t knocking it!

Karen
 

darylfitzsimons

Registered User
Nov 16, 2011
2
0
Hi everyone,
let me better explain the intentions of the website i'm making. Its a localized website for the careers and family of suffers of dementia in my area. It directs them to a range of local services, treatment and care facilities. It is in no way intended to be a replacement or alternative to this forum as the target audience is specific to the Dublin area. Apologies for any confusion I may have caused. I realize this is a sensitive area and the last thing I want to do is to upset or offend anyone in any way and I'm sorry if I've done this.
As well as providing useful information on services and treatments, I hope to create a community aspect to the website, I realize this website does a fantastic job at this already, but I'd like to know if there are any aspects of this website that work particularly well and maybe those that don't. Is there anything that is not already in this website that could possible work for another website, I'm thinking of ways of establishing a network for people to interact with each other, share their stories, reach out to people, offer advice and support etc. One area I'm looking into is creating a way for members of the website to set up support groups in their own area where they can meet up and engage with people affected by the illness. There will also be an emphasis on fundraising and volunteers. I'd really appreciate your impute and to hear your thoughts and views. Again sincere apologies for my previous thread, I should have better explained my intentions.
Thanks,
Daryl
 
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CaPattinson

Registered User
May 19, 2010
11,730
0
West Yorks
hello Daryl, thanks for claryfying your intentions as for me this is one question I need answering before consideration.

QUOTEcreating a way for members of the website to set up support groups in their own area where they can meet up and engage with people affected by the illness.

My one concern. I am sure you have considered any potental risk.

Otherwise, I wish you success!

I would be interested to know how your website develops.
 

Bastan

Registered User
Feb 10, 2011
483
0
Manchester
Hi, I can't be of much help, however, how I wish I could meet up with some fellow TPers some days!

Impossible as we are all over the country. So for creating support groups a localized forum would be great. Having said that it could not in my opinion replace a forum that is shared by all. I personally would like both. Some of the best advice I have ever been given has come from up and down the country.

Good luck with your endeavour.

Bastan
 

sussexsue

Registered User
Jun 10, 2009
1,527
0
West Sussex
One question I am sure that will come up on your forum would be opinions on local care homes, hospitals, etc. I think you should follow the lead from TP and insist that any names are not permitted on the main forum, but that members should instead PM each other. You could otherwise set yourself up for liability. As we all know people can have very opposing opinions on the same place.

I think you also need to produce a set of conditions that people have to agree to before joining.

Also be aware that it could turn into a major commitment. Apart from real-time moderation, if it becomes a success people could become very reliant on it and down-time could become an issue, or slow speed.
 

Jancis

Registered User
Jun 30, 2010
2,567
0
70
Hampshire
Hi Daryl,
Your ideas sound so very interesting. Many people who join Talking Point choose to keep their identity and location anonymous. I would definitely join a local carer's website as it would be easier to make contact with others who understand the unique social and geographic landscape. And who knows I might make some real as opposed to virtual friends who I could easily meet up with. A lot of carers feel very isolated. There are some TP members who have made real friends in their area and they have provided support with campaigning and have had social get togethers, but this is quite rare. I have made lots of virtual friends but none are local to me. You will see that there is a "Community" section on the TP home page and within this you will see "Groups" I have noticed that a couple of members have attempted to form local "Groups" but without much success.

Just realised my post crossed with Bastan's - seems like we both share the exact same view!
 
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Tender Face

Account Closed
Mar 14, 2006
5,379
0
NW England
Hi Daryl – so pleased you have come back and told some more.:)

I have to say this sounds like a quite wonderful initiative .... and certainly something that plugs gaps that national – even international - forums cannot possibly manage. Your prototype could be a very valuable tool to provide carers in localised areas with information they need!

OK – no criticisms – or even need for answers - just thoughts into the pot: Where is the funding coming from, or is this an entirely voluntary initiative? One reason for asking, you will probably be aware charities such as AS themselves (AgeUk to name just one another) are offering ‘signposting services’ now ... in other words ... they may not provide the service but they know someone who does ..... I know as a former carer I would loved to have ‘tapped in’ to a local network which told me whether Crossroads/AS/Princess Royal Trust even my local council etc etc had support available in my own area ..... converse of that, are you duplicating anything national organisations may be offering locally (maybe not online)? Or again, might you have the skills, abilities, time etc etc to actually co-ordinate all the different organisations locally in their ‘sign-posting’ and secure funding or resource from them to support your work?

I think in the current ever changing world of cuts and reviews (UK), this type of service and information is invaluable ... I know I have heard of cuts – or been pleasantly surprised by new initiatives – often through word of mouth locally. If that can be shared quickly and lcoally to save another carer the angst of trawling through all possibilities, fantastic! But how do you make the service known?

I understand what other posters are saying about security ..... whilst I do appreciate the need to be particularly sensitive – especially on a website that may attract people who may lack some capacity to make their own judgements about personal safety ..... I believe there has to be some balance around risk. Disclaimers may be a solution.

I think of going along to a Carers’ group (in person) – or for that matter a Debating Group or an ‘evening class’ .... I would have to make my own judgements about who I trusted, how much information I wished to share about myself and so on. (And I’ve got it wrong myself on TP in the past – although wonderfully right on other occasions!)

Creating a website does not require you to have a social conscience, of course – at this point, I am investing ‘trust’ that you are a bona fide poster on TP and your intentions are nothing but honourable!! ;) Is there any way you could gain some accreditation from somewhere for your site?

It’s a wonderful concept .... looking forward to hearing much more. :)

Karen, x
 

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