Doctoral Training Centre meeting – Bradford Uni…

Yesterday saw me off to Bradford University. This time it was a meeting of the Carer reference panel and Alzheimers society research network meeting all in one for the Doctoral Training centre
Bradford is one of 8 Doctoral Training Centres funded by the Alzheimers society. Their aim is to help develop the next generation of dementia research leaders. Many of you know my passion for encouraging students, so I’m more than pleased to be involved here.

I was hoping for a nice summers day…….lots of warm sunshine………but the whole week had been a wash out and Thursday continued in the same vein and was damp and dreary.
However, the trains behaved themselves and 3 trains later I was there.
I always like to walk from the station up the hill to the University as it’s a pleasant walk

Once I got there I got totally lost as we were in a different building – it looked easy to find as it was call the ‘Bright’ building………but when I found myself out the other end, I knew I’d gone the wrong way.🙄

But then I saw 2 familiar figures at the top of the hill and walked back to where I’d come from…….The reason I couldn’t find it was because the sign didn’t say ‘Bright’………….🙄 It was a lovely building inside though

However we arrived and I was met by Prof Jan who got me a cuppa. ☕️ immediate brownie point👍

All the students arrived and the lecturers, volunteers, and we went round the table with introductions………
Barbara’s Yorkshire A team were in situe as Me, Sandra, Louise, Vivien were the Alzheimers society monitors for this project – I think!!

Courtney Skyped in from Portsmouth emergency department.

Barbara chaired the meeting.

First up were presentations from 2 of the students.

Denise De Waal spoke first about her research – ‘Daily life with dementia and other health conditions in the community’ – the importance of understanding how people with dementia can continue in their daily life along with other health conditions.

She has joined in with her participants daily life, just being with them, helping do the dishes. Lots of observation.

The examples she chose to speak about were – wearing glasses and medicine management – basic everyday things for some of us.

Imagine having dementia and wearing glasses. – what happens if you don’t have them or can’t find them? – you lose confidence, you can’t see people’s expression, can’t read, get confused as to why you can’t see.
Akhtar asked if a supporter didn’t wear them does the person with dementia know who they still are which was interesting.
The eye test in itself was testing and having new glasses is a trial as they’re not familiar.The husband asked if Denise wanted to go with them to the opticians. First thing the person said when they went to pick up new glasses was “They’re not mine, I didn’t choose them”

Denise has visited them since and the lady had become used to the new glasses.

Medication – how difficult to have dementia and take medication. Barbara was saying she always had the same conversation with her mum as she asked what they were and why she was taking them.
I was saying how chemists often give you different shaped and colour tablets each month.
Denise was demonstrating the complexity of having dementia and simply daily life.

Fascinating study that’s not been looked into enough, so good on Denise.

Next up was Akhlak Rauf around his research around understanding how South Asian families cope with dementia.

He started off by describing equality of services and the reality. Some people have a lot of access whilst others struggle to gain access.
Dementia doesn’t descrimnate but policy is lacking as far as the BME communities.

Aim – to get an understanding of socio cultural and religious issues factors
And to identify transitions as step changes in levels of care needed that will enable coping strategies at various stages.
He said professionals should be asking ‘What are the transitions according to people caring not what service providers think the transitions are’.

The word ‘transition’ is one professionals use and is meaningless to families.

Akhlak is just looking at it from the carers view. He told us of his preliminary findings.
He found one message coming out was getting information when people wanted it not when professionals thought they might want it. They want to look after their own with support whereas professionals think they’re ok because they’re looking after their own – both have very different meanings.

Akhlak doesn’t want his findings to gather dust on a shelf – he wants it to influence change for the BME community. His talk showed the complexities and assumptions that people mistakenly make about the BME community.
Another great project.

We then had a lovely lunch – before discussing in pairs first how we thought we could work better together.

There was a slight blip in so far as we ran out of teabags😱, which almost lost them their brownie point, but Jane kindly went and got me a cuppa tea from the café so all was forgiven but that went at the top of the lessons learnt sheet for today.
‘Never run out of tea bags” – criminal offence……..😊

Loads of ideas floated around the room with the aim of giving the students as much support as possible, after all, we all have one aim for them – to stay in the field of dementia and become the next research leaders

Murna thanked us for coping with the ‘Discombobulated meeting’ – lovely name…….it’s a new process so will always have its ups and down but today was wonderful as ever.

I was shocked to hear that there is no funding for the next intake – which is very sad as that gives out the wrong message. The Doctoral centre at Bradford has put together such a fantastic model that it shouldn’t be allowed to simply stop and disappear.

 

Advertisements

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.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s