Research meeting in Sheffield

Last Thursday I’d been asked by Anna Grindbergs-Saul (Research Engagement Officer)if I’d like to attend a focus group in Sheffield last Thursday – “Core Outcomes for Dementia” that the Alzheimers society are supporting.

The day started off badly……..I got to the station, only to find trains cancelled😱. Our local station has a lovely ticket office lady who is so helpful and knows anything about everything – she wasn’t having a good day, bless…….

The train was supposed to be straight through to Sheffield, however we were advised to take the only train leaving the station in the foreseeable future as we’d be able to get a connection in Hull. What no-one had mentioned was that all the trains in Hull going in that direction were also delayed….😡…🛤…..

I’d almost given up and was sat on my train back home when I heard an announcement saying a train was arriving for Sheffield – do I, don’t I? In the end I thought I’d give it a try but couldn’t work out what the delay meant to my arrival at the meeting. I knew I’d be delayed, just couldn’t work out by how long. 🤔

Having said that, 5 mins further down the line, another announcement…..that the river bridge had been opened to allow the boats through……….further delays………you could hear the exasperated tone in the voice of the ticket officer……
5 minutes later another announcement………”this service will no longer be going to Sheffield”……………😱 it will stop at Doncaster”………..

Ok, stay calm…….got to Doncaster……………surprise surprise…….trains delayed……..just have to find the Sheffield platform..needless to say, it was also delayed………

I txt Anna in the end to say I’ve come this far so if I get there and it’s too late, just send me home.

I ended up getting there at 10.45 – the meeting started at 10 😳 My original plan was to arrive at 9.15 in Sheffield so it’s a good job I always allow myself time..The nicest thing was I wasn’t the last to arrive – who should be the last but Ola Colin!!! A friend from my blog and the research network. Unbeknown to me, he’d had the same nightmare journey – in fact, he was probably on the same train and I just hadn’t spotted him, even though I’d looked.

At least it was a sunny day – if it had been rainy, I would definitely have turned back – good job me and Colin persevered as it was a small group of 4 – 3 people with dementia, one of which were a couple.

The names of the 2 researchers appear to have escaped my iPad, but they started the proceedings by telling us the aim of the project. It is to develop a group of outcome measures to be used in disease modification trials. Those trials whose aim is to alter the progression of dementia through drugs or diets – what sort of questionnaires can be used for outcome measures to see if changes have taken place in those of us with mild to moderate dementia?

They asked us to comments on a variety of methodology.

The questions on the left around shopping, travelling and housekeeping can be more important for our group than questions around personal hygiene
The questions on the left around shopping, travelling and housekeeping can be more important for our group than questions around personal hygiene

So, for example, if we had taken place in an exercise programme to reduce the progression – what would we be looking for as outcomes – I said mood improvement, mobility, engagement with others.

We constantly kept going off piste but they didn’t seem to mind:)and we enjoyed ourselves comparing notes. I’m always saying how beneficial it is to talk to other people with dementia. It’s so reassuring to know you’re not the only one experiencing the same type of symptoms.

They asked how you would feel if you were told a carer or family member had to be there or that they had to complete a questionnaire for you.. They directed that at me knowing I lived alone – I said there were many people living on their own with dementia and there are ways round not having to have someone present – e.g send me a questionnaire to go through and fill in with them for me to bring to the appointment. I wouldn’t expect my daughters or friends to come with me to each appointment when I can manage on my own. It’s not fair to expect them to take time out of work.

The word ‘carer’ was hated by us all. My daughters are my daughters just as the woman said her husband is her husband not her carer.

We talked about the importance of the researcher being experienced in talking to people with dementia. Not talking too fast and giving us time to answer are key.Also having the ability to extract the information they were looking for; for example, if the question was “Can you travel alone?” It’s not as simple as yes, or no. I can travel alone if I have my written instruction and photos to help me,
We all said how we liked to talk about what we can do instead of what we can’t.

A variety of other things were mentioned – layout of any questionnaire; clarity of questions and keeping it simple all spring to mind.

We eventually finished when our brains began to grind to a halt……..another important issue to remember when researchers are asking questions – how long can we last? Our response was:
We’re all different and it will depend whether we’re having a good day or bad”….
The journey home was wonderful as me and Colin were able to travel back together and put the world to rights. We shared a taxi to the station with Anna and had half an hour to wait before our train was due. The journey passed quickly and we soon reached Hull where Colin got off and I went onto my stop.

An eventful day, in more ways than one…….

'Ola' Colin😊
‘Ola’ Colin😊

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

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