Giving people with dementia information after diagnosis

[Sarah Thomas]

Getting information about your condition after diagnosis is very important.

Making sure that you get that information in an accessible, easy to understand, convenient and useful way is also important.

I am very interested in getting your views on the ways in which you would like to be given information before and after diagnosis.

There are some new ways that are possible with modern technology. Would you be interested in receiving information on a DVD, for example? Or perhaps you would prefer the option of being able to download a podcast or Youtube video?

Maybe you just want information in a written form, such as a leaflet? Or perhaps the best way is to have a person to sit down and talk to you and give you the information that you want?
Or maybe you'd like a combination of these different ways?

I look forward to getting your feedback.

Many thanks

Sarah

 

[jenniferpa]

Sarah - do I take that your intended audience is those who have dementia rather than carers?

 

[Clive]

Hi Sarah

The information required is very individual and depends on the person, and what their condition is when the diagnosis is made. I can only give you my experience of my mum. I expect there will be AD sufferers who are diagnosed very early who will be able to give you their opinion, which will be of more value for your current project.

By the time mum was diagnosed with AD she was well past the stage when she could comprehend anything. The consultant’s words were forgotten before she got to the clinic door… if she had even registered them in the first instance. We never mentioned AD to her. If she could have comprehended what was happening to her it would have been very frightening for her. If she had been given a pamphlet I could imagine her sitting all day just reading and rereading the same page, becoming increasingly upset, but unable to move on. We tried to shield her from what was occurring. We never went further than agreeing with her that she was a bit forgetful, and her memory was not as good as it had been. We encouraged her get her affairs in order by telling her she might get knocked down by the proverbial bus tomorrow. We might have been wrong, but this is how I would hope my relations would keep the dreadful news from me.

I think there needs to be far more information for relations; especially about how the AD sufferer is likely to interact with other people. In my opinion most people are never able to comprehend how devastating this disease is. They never appreciate that many AD sufferers have retreated into their own world and it is no longer possible to have a normal two way conversation. They still expect the AD sufferer to control their body and mind in the way they did before the disease took hold. In my opinion it is this concern that needs addressing, because people have to understand the disease changes their loved one.

As we are all different in the way we absorb information I think it is probably a good idea to use all the media you speak about to inform carers and the general population.

Personally I was happy with the written word.

Regards

Clive

 

[christine_batch]

Hi Sarah,
I think that the information should be with the Consultant/Doctors to give to the next of kin.
Important information such as benefits, Social Services, where and who to go to for help and advice, support.
In talking to Former Carers and Carers at Local Branch, they had to find out the hard way.
The is just my own personal observation I have done at our Branch.
Best wishes
Christine

 

[Kayla]

Dear Sarah,
I think it might be a good idea if family doctors and other health professionals were given information and training about dementia first, as most of them seem to have very little idea of its devastating effects. I specifically asked Mum's GP if she'd had some kind of stroke, after she'd complained about "losing a day" and was having many of the classic vascular dementia symptoms. He told me that she definitely hadn't had a stroke and was very little help.

Even the hospital doctor, who made a home visit after Mum had bad hallucinations, told us that Mum didn't have "senile dementia", because she was able to dress herself in matching clothes and was neat and tidy.

If the GP's were better informed, they would be able to help dementia sufferers and their families by passing on relevant information, according to need and ability to understand, which might vary from situation to situation.

I think it is the isolation and not knowing where to turn, that makes life so difficult for people. Once I understood more about vascular dementia, from talking to Matron in the Nursing Home, I was much more able to deal with Mum's often bizarre behaviour.

I do feel let down by her GP and the hospital which treated her broken hip. If only we had received the care and consideration that families suffering from other conditions seem to get automatically.

Kayla