Does TP need better public relations? !

[sarahc]

I just came back from a 'review' of my mum's care in her fabulous home in the north-west. I mentioned to the care home manager and to mum's named carer that I got a lot of comfort and advice from Talking Point and suggested they recommended it to other relatives. They had never heard of it which somewhat astounded me as they are a very ' on the ball' home. Should/can the Alzheimers Society do a PR blitz to care homes (there must be a database of them).They could send out e-flyers, hard copy flyers, posters, info for homes' newsletters, open days etc. I would be happy to volunteer to help to do this if someone could point me to the powers that be at the AS (I do quite a lot of PR in my current job in African music promotion.... hey how different can it be for Talking Point ?!!!). Or maybe the Society does this routinely and my mum's home just isn't on their list. Given the support we all find at TP, it would be sad if other potential members were missing out because of a gap in the AS' public relations machine...
Just a thought ...
love, Sarah C

 

[Amy]

Hiya Sarah,
I think that you have a good point. We'll have to see what responses your post brings.
Love Helen

 

[Brucie]

I agree and the moderators have all tried to have AS raise the profile. To an extent we have been successful, only to an extent.

However, the Society has so many things to look after, I think that TP, is pretty much left out of the formal structure of AS because it appears to run itself without needing to draw on AS resources. I guess they may reconsider now.

However, I reckon if every TP member contacted the AS and asked for better visibility of TP, then something might happen.

 

[sarahc]

Can someone explain rship of TP to AS ?

Can someone explain the exact way that TP fits in to the overall AS structure ? Is there someone at AS HQ who is responsible for TP? It seems to me that there is a massive lack of reaching-out to a fundamentally important constituency ( ie carers/relatives of people with AZ, VD etc esp those in care homes - care homes are , at least, a defined group of institutions which are easy to access in terms of PR) . Carers/relatives, and even care home workers, would benefit from being able to access TP but are maybe probably unaware of it .

I know from my own job (which is in the arts) that PR is everything - .... if people don't know about you, then how can they benefit/help ? Plus the AS would benefit in the long term through donations etc - I know that I, for one, when my mum passes away (which will be very soon now) will ask for donations to be given to the AS more or less purely because of what I have gained from TP over the last couple of years (as well as the need for research etc). These are very powerful arguments for the AS making TP an integral (not peripheral) part of their very important services. I may have got the wrong end of the stick and the AS may see TP as a primary constituency but it does not seem to be that way .
Sarah

 

[Kayla]

Quite frankly it never even occured to me to look for information about my Mum's problems from the Alzheimer's Society, because I was told that she didn't have Senile Dementia by the hospital doctor. It was quite by chance that I discovered TP and later realised that Mum had Vascular Dementia, from the information that the Matron of the NH gave me.
It needs to be made clearer that the Alzheimer's Society can help support patients and their families, whatever type of dementia is involved. In any case, it seems that Alzheimer's can only be definitely diagnosed after death and many people suffer from more than one type of dementia.
Kayla

 

[jenniferpa]

Me too! I only found the AS after a google search about demntia and banking. My mother's post stroke.

Jennifer

 

[noelphobic]

That being the case I would imagine that there can be no accurate figures on the incidence of Alzheimers, as I would imagine it's not that common for people with dementia to have post mortems.

I have no idea what form(s) of dementia my mother has. She has been described as having Alzheimers, vascular (although I think they were calling it multi infarct at the time), Lewy Bodies and also Binswangers (sp?). I really don't expect to ever know.

 

[Nutty Nan]

Better public relations would surely help many people, regardless of whether a diagnosis has been made, or not: it would, at least, enable more people to become aware of the miriad of issues surrounding any form of dementia. This could lead to better understanding, and even to people being more easily able to make the link with someone's erratic/odd/unexpected behaviour and thus react more appropriately.
I, for one, wish I had found TP sooner, and I have gained an unbelievable amount of information and endless support which has definitely helped me to cope better for the last 3 years+.
By the way: I came across TP purely by accident in my search for answers ....

 

[Grannie G]

When my husband was diagnosed, I logged on to the Alzheimers Society web site to see what information was available. So I stumbled into TP by accident too. Everyone knows about AS, but it seems not everyone knows about TP.

 

[Kayla]

There seems to be a lot of misinformation about, and Mum's GP either knew nothing about dementia or he was deliberately misleading us. I did ask him if Mum had suffered some kind of a stroke when she began behaving strangely, but he said definitely not. It would have been so much easier to cope with her if I'd understood what was wrong earlier. I just couldn't understand why she had stopped reading and was getting day and night so confused.
I felt as though I was alone in having to deal with her confusion and yet many of her problems are so typical of vascular dementia patients. It is easier to cope when medical information is provided in a clear and accessible way.
Well done TP! It's a pity that the NHS can't follow the lead of the Alzheimer's Society.
Kayla

 

[jenniferpa]

There seems to be a lot of misinformation about, and Mum's GP either knew nothing about dementia or he was deliberately misleading us. I did ask him if Mum had suffered some kind of a stroke when she began behaving strangely, but he said definitely not. It would have been so much easier to cope with her if I'd understood what was wrong earlier. I just couldn't understand why she had stopped reading and was getting day and night so confused.
I felt as though I was alone in having to deal with her confusion and yet many of her problems are so typical of vascular dementia patients. It is easier to cope when medical information is provided in a clear and accessible way.
Well done TP! It's a pity that the NHS can't follow the lead of the Alzheimer's Society.
Kayla

I also wonder if there is some sort of conspiracy of silence when it comes to GP's and memory loss. I realise they have to be generalists, but if you take your elderly parent to the doctors because they're not remembering things they had no problem with before and are told "it's a normal part of aging" there's not a lot you can do to halt future problems (my mother HAD had a stroke, didn't remember to take her meds and had 2 more). Perhaps if the GP had been a little more curious, or even thought about the fact that she had removed my mother from the blood thinners several years previously becasue of anemia, we might not be in the situation we are now in.

I supose part of the problem with regard to the Alzheimer's Society is that you don't look there if the diagnosis is NOT Alzheimer's. I give them full credit for providing information about all forms of dementia, not just AD, but I guess it's not part of their brief to search out sufferers of other types of dementia, and it isn't the first place you'd look.

Jennifer

 

[mocha]

Spreading the word........Comfort

I agree that a lot of people come across T.P by accident and I wonder if we could have our own A4 size Poster. I am not computor wise enough to design one myself but I am sure some of you could.
Our Doctor's Surgery is very good at putting posters on their walls if they are not too big and if we could all download and print something I am sure we could spread the word.

It is a very lonely life if you are part of a couple with one of you suffering dementia and what a lifeline Talking Point is.

 

[Norman]

Hi Mocha
there where some flyers produced,I don't know if any are still available .
Email Clare and enquire.
Norman

 

[daughter]

Here is a Word version of the flyer I received from Craig back in 2004 - I hope it's still ok to use.

 

[connie]

Good to see that again Hazel. We distributed them around at one time.

(Out of interest I was advised of this site by Lionel's C.P.N. It was just after I bought my computer and had no idea what to do with it. TP was my grounding on the Internet)

 

[mel]

I tell everyone I come into contact with about TP......social worker,CPN,Doctor,continence nurse,respite home and ask them to suggest it to other carers......they've all taken note of it.....just hope they pass it on.....

 

[Margarita]

Yes, it would be a good idea if someone could design a poster for TP and we could photo copy it as many time as we like and hand it out at doctors, care home, carer group

Also would be good if we could have a link that we could cope paste and leave on our web site

 

[Brucie]

As Norman says, there was a small compliments-slip-sized flyer produced by the society a while ago but I've run out of them. Funny, I was at the surgery this week and was thinking it would be good to see a TP one there - especially as there was an ideal space available.

Ideally it needs to be larger than the original printed flyer.

There is a moderator's meeting in February. We will add this to the agenda. I have already added this thread as an urgent discussion topic.

Thanks everyone!

 

[daughter]

Hi Bruce,

Was the Word document I posted not the original flyer? I believe it can be printed A4. Perhaps it could do with updating?

 

[Brucie]

Was the Word document I posted not the original flyer?

this document was one produced by CraigC so we would have something while we waited for the AS-produced one.

I can't find a version of the final one at home, or on my PC, so can't forward it. I left a batch at Jan's home and will see if any are left when I go tomorrow.

In the absence of anything else, I suggest you use Craig's version.

We do need an A4 poster anyway.