The Power of Working Together….

A long blog, mainly for me as I found it all so fascinating and wanted to remember as much as possible…….

 After the eventful, but also beautiful arrival in Edinburgh on Sunday

…Monday morning arrived.

Linn Sandberg, a Swedish researcher, along with Richard Ward from Sterling Uni had been planning everything and the workshop is funded by a grant from a Swedish funding agency. They’d arranged for anyone who wanted to, to meet in the foyer of the hotel, to walk to the venue together – always a good move….

So after breakfast I headed downstairs to find others waiting for the trundle up the hill with Linn…..it was a beautiful morning and who should jump out of the taxi once we arrived but Agnes….perfect timing and I was able to give Agnes the lanyard I’d picked up for her

After a cuppa and catch up we made our way up to the room and Richard Ward started us off……

The audience was made up of phd students, lecturers, research associates, sociologists, social worker, literature student  and researchers from Sweden, Amsterdam and Russia…..WOW!

All hear to be involved and learn about post colonial representation of age and ageing approach to dementia……

Richard started off, saying he and Linn were given a small pot of money to kick start the network. They held a workshop and have since tried to establish an on line presence – the link being at the bottom of this blog…..

From a dementia point of view dementia, there’s an emergence  of a new generation of activists amongst people with dementia, supporting each other but also questioning the the political status quo. So we’re here to talk about how researchers and people with dementia can come together and support activism.  Richard meantioned how the people present often felt as though they didn’t quite belong at many Alzheimers conferences because of their emphasis and viewpoint and hoped this network would provide them with a ‘home’.

It won’t be a meaningful network unless people with dementia feel it’s relevant. It provides excitement for research and funding.

He also said how activism and networks of people with dementia are also responsible to ensure they’re multicultural, they they don’t discriminate – a very good point! We can’t say we’re discriminated against if we discriminate ourselves….

Life Changes Trust, here in Scotland, are instigating a school of Activism for people with dementia and a forum for policy and practice for people with dementia.

Linn spoke next and gave a brief background re the last workshop….

The drive has been to engage with critical movements, feminist , activists, and bringing out conversations in many arenas who have similar parallels…neuro diversity….many different neurological problems have similar issues.

Critically interrogating concepts of citizenship and personhood. What are we not talking about in Dementia studies – what’s being put aside?

We had a great discussion about learning disabilities, autism and disablilty movement…..and how dementia fits, or doesn’t fit into these movements…….

Andrea spoke of the fact there are still so many people that we’re not hearing from – those living in poverty, those with mental health issues and dementia, and other diverse groups…….and we have to respect that some don’t want to speak out said Agnes. For some groups, conversations happen over a cuppa tea….and these conversations are often more meaningful than at formal meetings…….

After a break next up was phd students giving a update on their project……each had 7 Minutes

The first student spoke of death and dying at the margins – her study is in Amsterdam but also in a rural area in south Netherlands.– she found some welcoming the end of life and how some wanted to hasten death

Euthanasia – people were very willing to talk about euthanasia. Me and Agnes spoke about the medical world making decisions for us. It’s almost a moral dilemma because we have to make that decision while we’re able.

They kept mentioning, ‘Queer Studies’ which I’d not heard of before and sounded offensive,  but it simply means sexual diversity studies……

Next up was the student from Russia – Nursing homes are the most stigmatised place for ageing in Russia. She is in the first year – and is working in various nursing homes in various regions. There’s a larger geriatric movement now developing in Russia and are being trained to introduce western ideas

. It’s still in the early stages and in a chaotic state especially when talking about dementia.

In Russia it’s sounds like the culture in Italy as families are reluctant to allow their loved outside to be involved in anything due to shame.

Last year the official numbers said there are only 800,000 people in Russia diagnosed but if the stigma is such, then it’s not surprising…..relatives don’t take their relatives to the doctor for diagnosis as they believe it’s a natural part of ageing.

The third was Emily, an English Literature student from Leeds. Her study was on Post colonial representation of ageing in film and literature written in the English language. …..challenging and romatiscing the concept of ageing. She looked at  gendered and racialised structure of care in the Caribbean ……and in New Zealand. Dementia is one chapter in her thesis and is just starting it. There was a discussion of the meaning of post colonialism…

Older people and people with dementia  are ‘othered’ in post colonial studies……is this good or simply creating another label?

She spoke of the bi health system that exists in New Zealand – one fro white settlers and the other the Maori Health system – soooooo fascinating……..

Next up was a second year student, Mah, from the Arts and Craft background….…….hers is a qualitative psychology study to investigate the loop experience of daughters looking after mothers with dementia……..she filmed mothers and daughters doing an activity together……including her own mother and herself…..and she showed us part of her film of her mother and herself sewing and chatting together…..she then did semi structure interviews as well as filming the activity….they then interviewed the daughter and they watched the video together and asked if they noticed anything striking or something they hadn’t noticed before. They often slipped into the carers role and forget, that the mum can be the teacher again through crafting…..it’s all about the relationship between mother and daughter and allowing a crafting activity to establish previous roles………again so difficult to find participants…

Mary next,from Scotland.  finishing her second year, her background is social work. She found those from black and ethnic minorities communities were finding it hard to find care in the care system.

So she’s exploring the black and minority communities accessing direct payment system.  They have been marginalised and oppressed when trying to access services. There’s a lot of research being done on the basics which is why she chose to research the Direct Payment system.

She also is interviewing social working involved in direct payment, carers who might believe need is one thing and people with dementia who might see their need as something different.

Mary is having real trouble finding people in Scotland from black and minority communities. Me and Agnes both said how this should form an important part of her findings..

James, our final student……his background, always had dementia in the family so his phd was based in the Midlands…..but again found trouble recruiting. He asked them who they considered the most important person in their lives. Academically he’s a Psychologist. He found that typically one person became the main carer. So he was interested in why, in a large family, does one person become the ‘carer’……he was interested in unpacking the family dynamics and peoples responses and tensions within the family. Many tensions were fuelled by the lack of services available to access. In almost all cases diagnosis was sought by the carer rather than the person with dementia and sometimes against their wishes.

What a diverse and fascinating range of phd studies……

After lunch we heard from Eman from the Central Scotland equality council. The charity recently decided to take on dementia as one of the countries very unrepresented conditions. They champion rights for people with dementia and carers but found it very difficult with barriers at every corner. “We don’t have people with dementia in our community”………

They questioned stake holders and asked if they’d thought of considering redesigning their services…….needless to say they hadn’t but at least they’re trying to bridge the gap. The direct approach didn’t work in finding people with dementia because people have a negative idea about services. A one size fits all service does not work with dementia……other people think they know best about individual needs…..for example they might think some people need an interpreter, but don’t think about the cultural sensitivity of that language……

Megan then spoke about an LGBT project being funded by Life Changes Trust…..my batteries were running low, and I havn’t done my bit yet…good job it’s all written down 🙄

Such a shame my fingers were losing the thread as it was another fascinating insight into dementia in the LGBT community….there was also bagpipes playing outside so my head was hearing everything and getting in a muddle…..🙈…. I glanced at Agnes and noticed her eyes closed as well, so I didn’t feel too bad…….

Agnes was up next …….so I forced myself to wake up a tad…….

saying how when she diagnosed there was no DEEP network, no dementia diaries, no Twitter and when you went to conferences it was all about the carers perspective  but over the time a group banded together and together gatecrashed events.😂 Behind the scene there was this movement developing, ……although we didn’t realise it at the time….she spoke of the emergence of Kate Swaffer and the Dementia Alliance Interational group being born….Agnes felt a lone voice and she found everyone talking about memory and her biggest challenge wasn’t memory but sensory challenges.

She spoke of us being ‘done to’…..but then the group of people with dementia started to talk behind closed doors about death, challenges and all things other people weren’t ready to hear.

People with dementia want partnership and to be treated as equal…….”

“It’s exciting times as people with dementia want to be in control of the lives and their death”

I then had to follow Agnes 😳…..and part of what I said was:

“In my humble opinion activism comes in all shapes and forms, taking on many guises, some outspoken in a public forum, some campaigning tirelessly,  others seeping into the very nature of people minds and thoughts to bring about change. All are a type of activism.”

We both spoke about the work we’re doing with with the Pioneers in Dementia Enquirers and It was then opened up for questions of which there were many including how we cope with professional criticism….with being taken advantage of by researchers and many more interesting ones……….

You can read this interesting and enlightening article by Linn Sandberg and Richard Ward from Sterling Uni here:

https://criticalgerontology.com/calling-for-a-more-critical-dementia-studies-criticaldementia-network/

And I just love the piccie that appears at the head of the article

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.

9 thoughts on “The Power of Working Together….

  1. What amazing and enlightening studies you have heard about.
    Recently I went to visit a nursing home just to look for the future should Mum be unable to cope any more in the wonderful Supported Living place she is currently in.
    The Nursing Home Assistant asked if Mum had any hobbies .I said she liked to knit .She said they’d have to take her knitting needles away from her as it is a Health and Safety issue .I said then how can she knit when she wants to? She said the carer in charge of her would ask her !!!!!
    This was a Nursing Home that prided itself in being fully Dementia trained ………really ???

    Liked by 1 person

  2. Great to read your perspective on the event in Edinburgh. Mum (Agnes) loves her lanyard. Thanks for making the effort to get up here to Scotland. Love reading your blog Wendy xxx

    Liked by 2 people

  3. Sounds like an amazing event. It’s funny, I used to see a gap between advocacy and activism. I have never really been an activist through my life, but find the longer I am involved in dementia advocacy, the more involved I become as a human rights activist….It seems you can’t be one without the other. Once you become aware, you cannot help but speak out against it!!!!

    Liked by 1 person

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