Caregiving HOPE – Project Panel Meeting

Caregiving HOPE ( HOPE stands for – How Obligated, Prepared and Eager – people are to care for someone with dementia)

I’m sure I’ve mentioned before that I’m a Research Monitor for the Alzheimers society. It simply means we monitor research projects that have received funding from the society.

I’ve recently been given a new project to monitor at Bradford University being lead by Dr Sahdia Parveen – Caregiving HOPE. My partners in crime on this project are the wonderful Sandra Barker and U Hla Htay (known to me and many others as ‘Tay’)

Our first meeting was last Friday. This project involves a panel who contribute to the project with the team’s expertise coming from many useful areas. Sadhia asked us to attend the whole panel meeting with a view to us having 2 hats and being part of the panel as well. Sandra was going to clarify with the lovely Matt Murray whether there was any conflict of interest but I’m hoping we’re allowed as it’s a wonderful subject.

Me and Sandra realised earlier in the week that we’d be on the same train from Leeds so we had chance for a lovely catch up over a cuppa before the meeting.

The lift had broken down in the Health studies building so once we’d met up with Tay, it was a long walk up to the 4th floor – me thinks that was a ploy to stop us talking too much when we reached the room –ha!

Professor Murna popped in and said hello and brought me a copy of the video clips I made for them a while ago and then kindly took piccies for me on my iPad of those that had arrived so far.

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We all introduced ourselves – and had to give one random fact…….I said I was once quiet and now I’m not……couldn’t think of anything random……

Prof Jan Oyebode joined the meeting via skype with the most adorable baby for us all to meet.

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It was so nice to finally meet Ripaljeet Kaur after our many twitter conversations. She does so much good work in Leeds.
Sahdia then gave an overview of the 3 year project.
It’s being funded by the Alzheimers society – hence why me, Sandra and Tay are present as monitors.

Sadhia then gave some staggering figures – there are 670,000 carers looking after people with dementia who save the nhs an estimated 11 billion pounds……..

Professionals often assume the family will do the caring which in turn often has a detrimental effect on their health – the questions Sadhia’s research is asking is:
Are they always willing and are they prepared to take care? So they’ll be looking at 3 things:

Cultural obligation
Willingness to care
Preparedness- how ready do you feel prepared

Because of the very unpredictable, progressive nature of dementia there are stress trigger points for carers – this highlights the need for support at different levels and at a variety of stages.

So what do the study want to find out –

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The study will be broken into two parts

Study 1 – National study of 372 current carers (minimum)

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Study 2 – Future carers – Min of 170 people with no experience of caregiving. How does this generation think about dementia. How much knowledge do they have?

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Sahdia is hoping to produce a book or video of pictures and opinions gained from the participants.

As well as academic outputs they are also hoping that there will be a practical benefit for carers and healthcare practitioners – healthcare professionals who work with carers – Also it’s hoped that students enrolled in courses will also benefit from the findings.
The panel will meet formally 6 times over the 3 years. Panel to be collaboratively involved.

Although the project only started on 1st October, Sahdia being Sahdia has done lots of work already. As monitors we reported back how organised, enthusiastic and dedicated she is to her work.

Sahdia😊
Sahdia😊

I need to remember to use #CaregivingHOPE when I talk about it on Twitter…😳

After the panel meeting we put on our Monitors hats for a separate meeting with Sahdia and asked her – “What keeps you awake at night?” – her response was ‘recruitment’ – Future carers will be difficult. However, I mentioned that Join Dementia Research would be a good tool to use as the majority of people registered are carers or healthy people simply volunteering.
There’s a wealth of knowledge within the team and I’m really excited to be involved.
Another great day at Bradford…..

 

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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.

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