So yesterday was a mix of happy and sad…….happy because I was going to the final presentations by 3rd year PhD students at Bradford University and an update from 2nd years……sad because now my calendar is looking very empty for the long summer school holidays with the last Minds and Voices for the summer on Monday too….
I panic when I see lots of spaces on my calendar as I know I will have to try triply hard to keep dementia at bay. When there’s no stimulation, no visiting new people and new areas, dementia takes it’s chance, sneers at you and creeps up without you noticing.
As the world seems to fall silent, as twitter playmates halve, emails fall silent as the long summer break takes hold.
Many people long for the summer and a break from work, a welcomed holiday, a break from routine……I don’t….it happens every school holiday, quite rightly, but the long summer ones are the worse…..yes, I know I can plan lovely days out in my favourite place, but they’re usually there for relaxing and recharging from all the busy days. I can still enjoy them but I don’t have the writing and planning for events in between to keep my mind active…… that’s the looming missing link. Maybe something will be snuck in by somebody…..
Anyway, back to yesterday and the happy event.
I woke to find the sunshine appeared to be having a break today as it was grey and much fresher than the sultryness of late.
My favourite taxi driver picked me up on time and even the trains were on time😳
Today I was attending the Doctoral Training Centre as an Alzheimers society Research Network volunteer as we have been monitoring these students since they started.
My playmate Sandra had chaos on the trains so txts flew backwards and forwards with updates
Anyway, arrived to find a lovely set up courtesy of their Administrator extraordinaire Giorgia
And after lots of hugs and catch ups Barbara started off as chair.
The room was made up of 2nd and final year PhD students and many were giving presentations today.
We congratulated Murna on her amazing award from the Society of Gerontology ???? – I think!
But no one better could have received it.
We went onto do a round the table with introductions followed by what has worked and what hasn’t in the last 12 months for the students.
In turn they spoke of their achievements but also their challenges, which ranged form gatekeeping by staff, learning that writing something, then editing, is better than writing nothing at all.
Lovely to hear their enthusiasm right from the start…..
Then we had the presentations – first from Courtney, who I actually helped interview 3 years ago and who I’ve been working with since……….the aims of her research was to create a model of dementia friendly emergency department…….
The current model isn’t working as many of the older generation have complex health needs.
She went through her finding of what is currently working and what isn’t in the A&E department which was really interesting, especially the use of the words, demented and senile being used!!
The people with dementia most at risk are the people who are independent or semi-independent, especially if communication is a problem. They may want to walk about but aren’t allowed and can’t verbalise to staff. Courtney watched 3 people with hip fractures tried to get up and walk………..this was because spinal block was being used for the pain which doesn’t work for people with dementia as it numbs the pain totally and they probably had morphine in the ambulance so have no pain or feeling of a fractured hip…… Katamine is the preferred option as it deletes the pain but not the sensation that something is wrong…….great learning point.
One sentence on a slide really struck and impressed me….
“Dementia can no longer be treated as a specialist area”
Every clinician should know how to treat, communicate and understand people with dementia.
As Sandra pointed out once again…..
“If we get it right for people with dementia we get it right for so many others”
Helen, a 2nd year student, was next………
Her research focuses on experiencing dementia as a woman living alone….there are no gender differences in policies. In dementia strategies, there’s no mention of gender differences and the experiences having differences.
Helen is specifically looking at women from lesser heard groups…..who live alone at the time of diagnosis. The difficulty in recruitment was understood but Helen had good ideas of where she was going to look and who to approach to help.
She will be carrying out narrative research, not interviewing. Instead listening through life story discussion. Using prompts will facilitate conversation.
Through her reading, she found how when a woman cares for a partner, she gets less support than a man in the same situation…….
Cuppa tea and lunch time and I sat alone drinking my cuppa and eating my tuna sandwiches very happily as there were too many conversations which are too hard to follow……but across from me 2 students were talking about interview techniques and one shared advice with the other, for which it was a wonderful light bulb moment….I just love that they help one another, share ideas, share good practice with no one being precious……just says everything about the culture at Bradford DCT…….
Denise was the final student
She’s in the final stages of write up and will submit 10th August and will have her Viva 27th September!! Amazing
Her research was all around daily life with dementia and co-morbidities in couples and the relationship changes that may occur. Spouses go through a redefinition process of their relationship. Denise believes we need explanatory work rather than exploratory research.
Identities can co-exist so one day a spouse can say, yes, I’m his wife and on another say, ‘yes I’m his carer’. This is why its important to provide a holistic theoretically informed research approach.
It again got me thinking how the social model of care works far better with dementia than the medical model. Giving spouses coping strategies to cope with the eventualities – as to deal with them badly can lead to worse problems and confusion than if given a method which might help.
Systems often force the word, carer’ onto spouses…making the relationship change without the belief in fluidity. One day my daughters care for me because I have dementia but the next day I’m a mother advising them – fluidity of roles…..
We finished with ideas for dissemination and as well as the usual academic journals…..there were ideas around webinars, videos, Alzheimers society promoting, soooooo many ideas, it was a wonderful way to finish off……
Once everyone left the research volunteers met with Jan and Murna…….we all agreed how we need to do more to get their research become reality as some of the findings were brilliant and easy to implement……we need to find the influencers who can make the change happen……..
Me, Sandra Barker and Sandra Duggan have been the research network volunteers for the last 3 years at the DCT, which has been wonderful and we’ll hopefully continue with the second year students until they finished….
Today reminded me why I love being involved at Bradford so much……..the culture, the atmosphere, the enthusiasm, but most of all…..the people…..
As for my journey home……mmmm well enough to say, my twitter friends kept me company🙈