A celebration of success……..

After a weekend of nothingness following a chaotic week last week, I started off this mega busy week in Bradford yesterday …..very long blog but sooo much to say…….🙄

We were there to celebrate the incredible hard work of the last 3 years of Dr Sahdia Parveen and her amazingly, revealing and successful study of Caregiving Hope. This study was looking at how willing and prepared people are and obliged they feel to care for those closest to them when diagnosed with dementia……

Sahdia’s success has come about through her hard work, energy and being mega organised. We’ve been with her all the way as Alzheimers Society Research Network Monitors – Me, Sandra and Htay have been with Sahdia for the whole study so how wonderful to share the end event with her as well…..

Because I’d had such a busy week last week I was late sorting out stuff for this week. So Sunday morning I suddenly had a panic as the main admin people at Bradford had booked me the wrong train ticket. I’d asked for an ‘Anytime Short Journey’ ticket and they’d booked me an ‘Off Peak’…😳😳😳….. I needed to travel before off peak time. When Sahdia contacted them Sunday they implied the ticket would be fine – I knew it wouldn’t..and it wasn’t……so they cost Sahdia far more from her budget than they needed. That’s why I always like to book my own, but this time they insisted for some reason……🙈

Anyway, the day started off well with the most glorious 30 mins sunrise….

Both the taxi man and me were just mesmerised……

30 minutes of glorious heaven went out with the blink of an eye and turned to dull grey raininess before my eyes………for those that didn’t look out they missed a wondrous sight…

Sandra was meeting me at Bradford station and we txt each other updates on our respective journeys…..having met, we trundled up the steep hill to the Uni to find Sahdia had everything all ready!! She’d been up since 5am, such was her excitement for her big day…we were leading the workshops in the afternoon. My one was “Living with Dementia” and Prof Jan would help and transcribe for me……

Then suddenly……the fire alarm went off 😳🤯 ……..and I just panicked, as I do, not knowing what to do, where to go…….we saw people in orange jackets waving at us outside…..so decided we’d better leave the building 😂……it was a test but a timed test…..we failed miserably….

The lovely Ripaljeet joined us……followed by Htay….

The room began to fill up…….with carers, who’d been part of the project and professionals and some who had a dual role…… everyone had been asked if they minded their photos being taken and all agreed…..

Prof Jan started off the event….welcoming everyone and saying how the next stage is for our thinking today about what 3 interventions would make a difference for Carers……

She said she was the ‘warm up act’ 😂…….

Jan spoke about the Centre for applied studies in Dementia Studies…..they not only do research but work with Gp’s, Care Homes, Hospices and a whole range of other activities…..

Dementia is a family affair” – Jan said…..family members provide a huge part as opposed to services that in comparison offer little….

Tom Kitwood left an amazing legacy to Bradford ……..Tom’s theory was one of relationships……

Sahdia’s project has been funded by the Alzheimers Society and Siobhan was here today representing the society…..Sahdia thanked all of us who have worked with her on the project as studies don’t come about from one persons input…..

Amazingly ethics won’t allow her to name us to the audience 🙈……

Sahdia has been a carer herself and health professionals often assume that carers are willing and prepared to provide care…..South Asians often ‘feel’ obligated’ to look after their own….but are they willing and are they prepared?  do they know how to access services and provide practical and emotional support.? Those willing may not know how to care.

This was the whole aim of the study…..is there a link between between, obligation willingness and preparedness to the carers outcomes?

They aimed to recruite over 300 but they recruited over 700, which was astounding…..the numbers were almost equal between white British and south Asian carers….

White British perceived they had less family support than south Asian but when it was measured, it was almost the same….south Asian felt more obliged, white British felt more willing….interesting finding…….

They gave the carers cameras to take photos of what helped them care….and at what point..

There is no word for dementia in the South Asian community and so the study referred to it as memory problems, but then the carers struggled to understand the different issues that affected their loved one that also come with dementia….

The carers took amazing photos

She asked why one carer painted their door yellow and red – it was to enable the person with dementia to go out on their own and know which was their house when they came back. When asked how they were coping, they would say they weren’t, but the photos allowed their coping strategies to shine out without them even realising how inventive they were being…..

The preparedness for decisions around residential care was fascinating between white British and and British south Asian carers…..

White British expected the person to move into a care home, whereas for the British south Asian carers it was far more complex – once they’d got over the cultural stigma associated with moving to a care home, it proved difficult to find care homes that adequately recognised their cultural needs, language, etc…..

Carers often say..’never, never will I allow them to go into a care home’…..but once difficulties arose and dementia progressed, views changed…..

Sahdia also ran alongside the main study, a study for future carers….those who weren’t current carers….the method was through a one off online survey and focus groups….they received over 1200 people instead of their low target of a couple of hundred….amazing…..more fascinating findings……..many had unrealistic expectations and thought there were wonderful services already in place……😳…..

Older members of the South Asian community were prepared to go into care homes, but the younger age group said ‘no way’ but had unrealistic expectations of what ‘caring’ entailed…

I could have written soooooo much more, so much came out of the study……..but this blog would have had to be several blogs as it would have been so long…..and I simply couldn’t type quick enough!!

Preparedness seems to be the key to carers outcomes…..so preparedness is what Sahdia will focus on next. What should be in place to enable carers to care and that’s where our workshops will come in this afternoon….to come up with the top 3 topics which would enable people to feel prepared to care

The questions from the audience followed…..including the existence of South Asian Care Homes. No one knew of any, but one person said how they didn’t necessarily need their own homes, they needed to be accepted in existing homes with knowleable staff in the cultural  differences…

It was then our turn as Research Network monitors to give a brief talk about our role….as critical friends of Sahdia…..

Sandra joined the Network exactly at the same time as me. Sandra was followed by me and Htay – we all had different stories and different reasons for being there…..it’s personal stories that make the value of research come alive….one thing I said was:

The academic brings their professional expertise, we bring our expert by experience expertise and together we make a winning formula for success.”

After lunch and much chat and meeting new people, we broke into workshops – 8 workshops that are going to create a support package for carers……

Me and Prof Jan were leading the ‘Living with Dementia’ table. So many things came out……the difficulty in getting diagnosis………the importance of talking to others……responsibility to be signposted….’we become compulsive liars’ to enable people with dementia to accept help, said one…..the pressure of being a carer…..of not knowing what they don’t know……the need for education in society and in healthcare professionals……

One person gave an example of her mum being excluded from the church committees when they knew she had dementia, which upset all of us…..they thought she was no longer capable……😔….I said they need to go to the church and explain how that exclusion was soooo wrong………and why…….

Why are we at the bottom of the pile for support and service…….? I said, We’re the easy option to be forgotten because we forget and carers are so busy caring they don’t have the energy……

Soo good Jan wrote notes as I hardly typed anything – that’s how good the conversation was and I had to concentrate……..we spoke for an hour and could have gone on for hours…

Each group feedback their finding……….I was defitely running on empty and my typing stopped…

But…….what am amazing day…….meeting amazing people once more……listening, sharing and laughing together …….the perfect combination…

Sahdia should be so proud of her study…..so proud of today…….and so proud of the informative magic book  published from the findings….

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 “A celebration of success……..

  1. Quite fascinating, the differences between the British white carers and the British South Asian carers. It is so important to take into account cultural issues, norms, and expectations when planning for or addressing groups. Otherwise a person’s answer to a specific question can easily be misinterpreted. I was a social worker and health program administrator in a large urban setting, and this was so true when trying to assist clients. It is also important for doctors to consider when making or explaining a diagnosis. I was impressed by Sahdia’s study, and would love to read more of it. Thanks for sharing this info!

    Liked by 1 person

  2. Thanks for the link Wendy and all your hard work. You are expected to care especially women with no children. But we are also expected to work full time and pay the bills. Your career aspirations and own health (physical and mental) are disregarded. For a condition that is the responesibilty of the “mental health field” there is little to no emotional support for the roller coaster ride that the family dementia “journey” is. My friend is getting emotional support for caring for her dad with cancer but nothing for caring for her mum with dementia. Take care I always refer to Tom Kitwood’s Daisy as I call it. Lovely sunrise x

    Liked by 1 person

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