‘Journeying through Dementia’

Yesterday I was at Sheffield University for the first meeting of the Trial Steering committee for a new trial entitled ‘Journeying through Dementia’.

I’d been asked some time ago by Alexis Foster (Trial Manager) from Sheffield, if I’d like to be involved. Also on the committee are Professor Catherine Hewitt from York, our Chair, and Dr Jennifer Wenborn from UCL. …….. Professor Gail Mountain from Bradford Uni and Alexis Foster were there to take us through the paperwork.

After several days of sunshine and heatwave the weather had now turned decidedly cool and rainy…☔ but the taxi arrived on time to take me to the station and I’d gone early in order to catch the direct train so no changing trains – perfect. Trials support officer, Lois, had organised and sent me my tickets which also saves a lot of hassle. When I’m asked to do these things, people often forget I don’t have an income as such and make an assumption that I can afford to pay and wait for a refund……………but these didn’t, so brownie point to Lois.

I’d finally had my meeting with PALs at Hull Royal after my traumatic visit there back in January the day before so I hadn’t slept well as I mulled over the content and this must have been playing on my mind as I had a wakeful and anxious night for some reason – but more of that on a separate blog ……………So lack of sleep meant my brain wasn’t in the best of moods but I was hoping time would improve that….

The venue sounded familiar and when I looked for a picture on the net, this also looked familiar, so maybe I’ve been to the Innovations Centre before for something 🙄
The Humber looked very murky as we rode past…..

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When I arrived in Sheffield it was equally as murky…….

I soon realised the taxi driver didn’t know where he was going….😱 and he eventually dropped me off somewhere random that sounded like where I was going but was a few streets away……😳Luckily I came across someone who knew where the building was which was very lucky!!

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I arrived the same time as Dr Wenborn so we compared notes on the lack of knowledge of our respective taxi drivers as we went up the lift. We were met by Lois, Alex and Gail who supplied the much needed cuppa.

Gail gave a brief introduction to the study. It’s being funded by the National Institute for Health Research. The study is a partnership between the Universities of Sheffield, Bradford, Hull Nottingham, Manchester and Sheffield Hallam in conjunction with a number of NHS Trusts.
The intervention programme is for people recently diagnosed with dementia – people in the early stages of the condition. The Intervention programme is to be delivered in a central venue consisting of 12 weekly 2 hourly meetings and 4 X one to one sessions. People from the NHS who are seconded into this role will be trained first and supervised on a regular basis. The idea of the initial one to one is to discuss what’s important to the individual. Most important element is that people are encouraged to enact those things that are challenging to them – e.g getting out and about – public transport. Discussing possible strategies and then ‘doing it’ – getting out.
The one to one sessions will start before the group sessions around individual needs and desires and will then be interspersed with the group sessions.
They were aware of the need of some people with dementia to have their supporters involved if the person wants it but they’re only involved in a very restricted way and the person with dementia doesn’t have to have a supporter – perfect:)

The trial is due to run until May 2019 and recruitment will come from a variety of sources. We discussed including Memory clinics; I suggested DEEP groups (and even take me along if they think it would help) and Join Dementia Research, to name but a few, in 10 areas of the Midlands and the North.Recruitment will start in October for 5 months.

The 3 of us seemed to reignite the enthusiasm and passion shown by the researchers as we offered suggestions and new ideas. We decided we were a small but perfectly formed steering committee😊

It was lovely to meet everyone and even nicer to be involved in this fabulous initiative. I wish I’d had a 12 week course when I was diagnosed………….

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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.

2 thoughts on “‘Journeying through Dementia’

  1. Thank you for the nice
    comments I am glad you found it all ok. We are very privleadged to have you involved in our study, I look forward to working with you and making the study a success. You are a truly inspirational. Alexis

    Liked by 1 person

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