Are we Obliged, Willing and Prepared to Care?

It’s always so wonderful when you see a study come to an end and see the results. I’ve been an Alzheimer’s Society Research Monitor on Dr Sahdia Parveen’s ‘Caregiving HOPE Study’, at Bradford University from the start. Today we were their to discuss the results as this part of the study – step one – comes to a close. I say, ‘a close’, but really it’s the start of a new chapter, as the finding could make a difference for many people and the next phase will start.

It was an afternoon meeting so a mid morning start, which felt very weird 😂……I was at a loss what to do for 4hrs as I was still up at silly o’clock 🙄….but at least a nice sky view from my back window…

Anyway, taxi arrived, train arrived followed by train number two at Hull and we trundled on time along the Humber

The other two monitors on this project are Sandra and Htay….we don’t see one another that often so it’s always nice to catch up.

Anyway I arrived at Bradford to find Sandra sat in the café and 3 of our phd students getting a cuppa and Sahdia came and said hello before she went to set up the room.

We trundled upstairs, meeting Htay on the way and chatted happily before the few others arrived

There were quite a few apologies. Time of year, summer and end of uni year maybe …….

Sahdia briefly went through the summary of results. They smashed their recruitment numbers. Not surprisingly South Asian carers did feel more culturally obligated to provide care however, white British were more willing to provide emotional and nursing care.

There was a high percentage of carers who had clinical levels of anxiety and depression. South Asians had higher levels of burden and depression

Because they recruited such a high number it didn’t matter that they had a large drop out as they were still well within their target number. The main cause in the drop in numbers was many moved into residential care and they’d had to exclude them.

Val joined us by Skype and Ripaljeet arrived. Havn’t seen her for aaaages….so lovely to see her.

The outcomes were so interesting and not what you would expect in some circumstances.

Key message was we need to increase preparedness to care…….for both current and future carers.

The second study was on those not currently caring. What would enable them to feel more prepared to care for a relative with dementia in the future. They smashed recruitment in this too. The findings matched the findings of the carers study. Age differences were very interesting. The south Asian older people wanted to go in a care home because they thought they’d get better care, whereas white British didn’t want to go in a care home.

Today we were also there to discuss hosting an event in October as we’d been successful in getting a dissemination grant from the Alzheimer’s Society.

We’re aiming the event at carers but also some health and social care professionals as well. We can have 80 people as that’s what the funding allows. Sahdia aims to ask, ‘What would help them feel prepared to care’, ready for the start of the next phase of her work ………Caregiving Prep….

We’d speak about why we got involved. The participants all provided wonderful photos that we could make use of in a display.

Sahdia gave us all a gift of the book from the study that’s been published and amazing bits she’d hand made.

A great study with fascinating findings with fabulous people …….

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.

5 thoughts on “Are we Obliged, Willing and Prepared to Care?

  1. Sounds like a successful stage one of the study. The results would be interesting to read. The disparity along cultural line as to who would choose to go into a care home is striking. Thanks for sharing!

    Liked by 1 person

  2. Very interesting Wendy, thanks for the information. As a carer, it is hard to plan and pace yourself for want of the best word. For the caring journey could be a sprint, a normal length marathon or a double ultra-marathon through death valley and up to Everest, without oxygen. The carers journey is also different from the person living with dementia, (someone said that it is like each person is on their own rollercoaster in the same park) it is the practical stuff, PIP etc, and the emotional stuff, none of the paid NHS Staff wants to talk about it, just hide behind “It is a very individual journey”. Yes, I knew that but more information than, it will be hard and “here be dragons”. The information is better now but still more support is needed for both the carers and the person living with dementia. Keep up your campaigning as long as it is enjoyable. All the best Donna

    Liked by 1 person

  3. I agree. Whilst in England we were given no info even when we asked. Up here in Scotland there is information and help!, through the Carers Act, but you have to look for it. My wife felt totally bereft at first, as she had to go through the grieving process with no outside help.

    Liked by 1 person

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