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Dementia Enquirers pioneers

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Dementia Enquirers pioneers

This is an empowered and ‘pioneering’ group of six people, all living with dementia. They are advising and helping to shape the Dementia Enquirers project. As the project progresses, some of the Pioneers are recording audio diaries to present their own thoughts about the project.

Pioneers

agnes-houston

Agnes Houston
Agnes was trained as a Queen Alexander Army Nurse.  She was diagnosed with Dementia of the Alzheimer’s type at age 57 and became a dementia activist. Her strap line is “ Think Dementia think Sensory Think Solutions.

dory

Teresa Davies (Dory)
Teresa is a retired landscape gardener, diagnosed with Alzheimer’s when she was 59. She is an active Dementia Diarist.

wendy-mitchell

Wendy Mitchell
Wendy was diagnosed with early onset Alzheimer’s in 2014.  She took early retirement from her work in the NHS to enjoy life “while I’m still me” and writes a popular blog.

mhari

Mhari McLintock
Mhari is a mother, wife, tandemer, friend, a Zoomette and Advocate for Dementia Inclusive Church… and she likes to dance.

george-rook

George Rook
George is a retired teacher and accountant, diagnosed with mixed dementia in 2014. He has become an activist for better dementia care, and, recently, a dementia craftivist

howard-gordon

Howard Gordon
Howard was an Auxiliary Nurse in the NHS until his diagnosis of Alzheimer’s and Fronto Temporal dementia in March 2017. He is a dementia activist in Sheffield.

Audio Diaries

george

George Rook’s Diary about the ‘Ethics and Dementia’ workshop: February 2020.

wendy

Wendy Mitchell’s Diary about the need to capture the ‘outcomes’ for all involved in Dementia Enquirers.

agnes

Agnes Houston updates on her work with Dementia Enquirers.

agnes

Agnes Houston reflects on what makes Dementia Enquirers meetings work so well.

agnes

Agnes Houston had a great meeting with Dementia Enquirers.

wendy-pic

Wendy Mitchell reflects – who would have thought people with dementia would ever be in this position?

carol

Carol Fordyce reports from Dementia Enquirers first meeting with doubts but then values the love and support from her peers which has encouraged her.

howard

Howard Gordon is in no doubt that people living with dementia can and should be involved in developing, running and participating in research.

Related blogs

Wendy Mitchell’s blog about the ‘Ethics and Dementia’ workshop: February 2020.

Wendy Mitchell’s blog about the Pioneers meeting in February 2020.

Wendy Mitchell is heading to London… Day 1 of Dementia Enquirers.

Wendy Mitchell is at day 2 of Dementia Enquirers…

Wendy Mitchell is at the final Day of Dementia Enquirers gathering…

    Twitter

Have you read or used our #DementiaEnquirers research pack? We would love to know what you think. You can let us know via a short survey here: https://dementiaenquirers.org.uk/publications/Dementia-Enquirers-Research-Pack-Survey/ If you haven't looked at the pack yet what are you waiting for? Read here: https://bit.ly/3mN1M8d

Bring yourself up to date about #DementiaEnquirers with our latest Newsletter here:

https://dementiaenquirers.org.uk/wp-content/uploads/2021/10/de-newsletter-15-.pdf

Very excited to be supporting the Leeds #DEEP group of people with dementia to carry out their #DementiaEnquirers research project into new opportunities after diagnosis. @LeedsPlayhouse @leedsdaa @LBUdementia @TNLComFund

Excited for the 8 #DEEP groups beginning their new #DementiaEnquirers research projects-all led by people with dementia. Array of topics inc. post diagnosis,impact of music making,intergenerational game & accessible info. More here: https://dementiaenquirers.org.uk/cohort3/ Thx to @TNLComFund

“The biggest encouragement we’ve had is that people have listened to us”

Listen to ppl w #dementia reflecting on the amazing research projects they have carried out with support from #DementiaEnquirers

https://dementiaenquirers.org.uk/films-webinars-and-podcasts/podcasts/

@TNLComFund

Understand the song and beat dementia!

#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/08/06/singing-is-more-than-singing/

Song # 210

#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/07/29/breaking-up-is-hard-to-do/

.@george_rook & Philly Hare look forward to presenting on #DementiaEnquirers tomorrow (28/7) with @researchIP

More info here:
https://bit.ly/3i5LINC

#DEEP groups will very soon hear if their applications for #DementiaEnquirers research grants were successful.

Huge thanks to the 9 Pioneers - all ppl w #dementia - who worked so hard to make good & fair decisions

Ground-breaking stuff!

@TNLComFund
https://dementiaenquirers.org.uk

A New Treatment for Alzheimer's!?

#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/07/26/two-processes-that-work-in-unison-maybe/

Are these two causes related?

#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/07/24/the-mad-book-chapter-14/

Great to see #DementiaEnquirers as an example of good practice in supporting 'user-led' research in the new @NIHRresearch publication "Public Involvement in Social Care Research"

Read the full paper here https://bit.ly/3Bcxi5E

@TNLComFund

Just brilliant - great to see⬇️
#dementia #DEEP #DementiaEnquirers #research #Peers

The Mad Book Chapter 9

#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/07/06/the-mad-book-chapter-9/

.@TommyShakes Brian from @YorkMandV has just finished the 'dementia book' (the #DementiaEnquirers report - https://dementiaenquirers.org.uk/wp-content/uploads/2021/05/minds-and-voices-in-york_report.pdf ) and reports 'it's brilliant, fantastic, the best book i've ever read, better than the Bible' No need for academ-ese!! @jdeanknight

Six Months Gone! Six Months to Go!

#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/06/29/six-months-gone-six-months-to-go/

#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/06/22/in-the-summertime/

The Mad Book Chapter 8

#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/06/22/the-mad-book-chapter-8/

The Mad Book Chapter 7

#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/06/20/the-mad-book-chapter-7/

You're My Best Friend
#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/06/18/youre-my-best-friend/

If you forget, this can happen!

#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/06/18/if-you-forget-this-can-happen/

Excellent work by the #DementiaEnquirers. Great to see people living with #dementia leading research, and a really important contribution.

A great read for anyone interested in coproduction/research led by people with lived experience. @TommyShakes
@Innov_Dementia #DementiaEnquirers @doryitsme @agnes_houston @howardgordon54 @happytandemer @WendyPMitchell @george_rook https://www.tandfonline.com/doi/abs/10.1080/09687599.2021.1916887#

#DementiaEnquirers Pioneers summarise how researchers need to 'look and listen, listen and look'. So many examples of relatable, accessible research led by #expertsbyexperience @Innov_Dementia @NRS_NDN #researchpractice #partnersinresearch #dementia

Looking forward to joining the #DementiaEnquirers this morning. Always one of my favourite meetings. Its great to see what can be achieved when people living with dementia are put in the driving seat of research @Innov_Dementia @NRS_NDN #expertsbyexperience #partnersinresearch

If Tomorrow Never Comes

#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/06/13/if-tomorrow-never-comes-2/

The Mad Book Chapter 5

#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/06/13/the-mad-book-chapter-5/

Whose driving this thing?

👏@doryitsme @agnes_houston @howardgordon54 @happytandemer @WendyPMitchell @george_rook @TommyShakes @Innov_Dementia @JDisSoc

#DementiaEnquirers #DementiaResearch

The deadline for applying for a #DementiaEnquirers grant is the 25th June.
These are for research projects led by people with dementia.
Remember your project can be very simple
If you want the application forms please email rachael@myid.org.uk

https://dementiaenquirers.org.uk/

Fantastic work! Congratulations to all involved. Is the article available to read online?

#dementia #DementiaEnquirers #AcademicTwitter

So proud to have #DementiaEnquirers article published in @JDisSoc!

Coauthors @doryitsme @agnes_houston @howardgordon54 @happytandemer @WendyPMitchell @george_rook @TommyShakes

Ppl w #dementia in the driving seat of research!

@TNLComFund

The Mad Book Chapter 4

#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/06/08/the-mad-book-chapter-4/

Play the Game: You're a Looney, You're In!

#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/06/07/4769/

The Mad Book Chapter 2

#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care http://toolate.blog/2021/06/06/the-mad-book-chapter-2/

Dementia is?
#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/06/05/dementia-we-all-know-what-it-is-dont-we/

Aspirin Keeps it at Bay!?
#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/06/01/aspirin-keeps-it-at-bay/

Nothing Compares

#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/05/27/nothing-compares/

I think I'm lucky to get old!
#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/05/25/this-is-me-is-it-you-too/

Some Days are Diamonds
#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/05/24/some-days-are-diamonds/

I don't want to stop!
#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/05/20/im-now-being-told-that-i-can-not-use-the-backing-tracks-for-my-song-a-day-dementia-challenge/

Matchstalk Men and Matchstalk Cats and Dogs

#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/05/20/matchstalk-men-and-matchstalk-cats-and-dogs/

Read all the latest news from the amazing #DementiaEnquirers here

https://bit.ly/33Z54Mz

People w #dementia in the driving seat of research

@TNLComFund

“The biggest encouragement we’ve had is that ppl have listened to us”

In our latest #DementiaEnquirers podcast, #DEEP groups + Pioneers reflect on their research reports, & what it's meant to them to be ‘in the driving seat’.

https://bit.ly/3oz7ElG

@TNLComFund

Leaving on a Jet Plane

#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/05/19/leaving-on-a-jet-plane/

Thanks @Innov_Dementia for the fantastic booklets of our #DementiaEnquirers UK Transport Report. 42 pages of Research/Evidence/Conclusions/Recommendations by & for the very people it affects..those living with #Dementia We r busy posting them out. Thanks to @TNLComFund #DAW2021

Our key message for #DAW2021

Check out our sparkly new website https://dementiavoices-id.org.uk/

for info on #DementiaEnquirers #DementiaDiaries #DementiaCraftivists #DEEP #TipShare... and much more

@TNLComFund

Have a look ~ #DementiaAdventurers as well as #DementiaEnquirers

The title of this blog says it all……
#DAW2021 #dementiaenquirers

https://whichmeamitoday.wordpress.com/2021/05/17/we-believed-we-couldand-we-did/

Bridge Over Troubled Water
#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/05/17/bridge-over-troubled-water/

So proud of all #DementiaEnquirers #DEEP @TNLComFund

🥳To celebrate the upcoming #DementiaActionWeek please see our #DementiaEnquirers Report about #Transport led by our Directors Tommy & Paul who live with dementia. We will be sending printed copies out soon. Thanks to @Innov_Dementia & @TNLComFund https://dementiaenquirers.org.uk/individual-projects/thred-in-liverpool/

I'm Into Something Good by Herman's Hermits 1964

#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/05/16/im-into-something-good-by-hermans-hermits-1964/

Thanks Andy, we are so proud of our #DementiaEnquirers research project & report about #Transport led by our 2 directors Tommy & Paul who live with dementia. Thanks to @Innov_Dementia & @TNLComFund & congrats to all the other great Projects led & controlled by pple with #Dementia

What a busy week we've had!

We're so delighted with the positive response to our new website https://dementiavoices-id.org.uk/

and to our 7 new #DementiaEnquirers reports https://dementiaenquirers.org.uk/individual-projects/

If you want a great end to your week
Please do take a quick peek!

@TNLComFund

Just had a celebratory zoom for those #dementiaenquirers projects launched yesterday. Such a variety of research questions here https://dementiaenquirers.org.uk/news/ few such research topics in academia. Why? Someone is not asking the right questions! Listen to and work with ppl living it!

What a lovely celebration of all the new #DementiaEnquirers projects this pm!

Best quote: "We're damned if we're going to let our reports sit on dusty shelves!"

Read them all here https://dementiaenquirers.org.uk/individual-projects/

The word is out! ‼️📢

Take a look at 7 #DementiaEnquirers reports lead, researched and concluded by people #LivingwithDementia including one form our @BethJohn64 peer support group!

Link: https://dementiaenquirers.org.uk/individual-projects/

Music's Magical Gift!

#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/05/13/musics-magical-gift/

Alexa (Amazon Echo) has a lot to offer many ppl with #dementia.

But more support & accessibility needed for max benefit

Read this new #DementiaEnquirers report from EDUCATE Stockport - led by ppl w #dementia

https://bit.ly/3y7drTY

@JacquiBingham @detatton2233 @TNLComFund

New #DementiaEnquirers report led by 2 #DEEP groups
- Shrewsbury Riversiders & @YorkMandV - calls for closer relationship betw AdmiralNurses & the #DEEP Network

https://bit.ly/3tI7oBW

See all 7 new reports here https://bit.ly/3tDQB2R

@TNLComFund @DementiaUK @george_rook

Can't wait to read through this in more detail. Very proud to be one of the advisors to the #DementiaEnquirers and their brilliant work

Brilliant to see the outcomes from these #DementiaEnquirers research projects led by people with dementia - including this important report from @thredcic on how transport systems can help people diagnosed with dementia live independently for longer https://dementiaenquirers.org.uk/individual-projects/thred-in-liverpool/

Fantastic news from @Innov_Dementia who have just launched seven #DementiaEnquirers reports - research led & controlled by people living with #dementia. Great to see!

It's a big news day for us! So proud to launch 7 #DementiaEnquirers reports - research projects led & controlled by ppl with #dementia You can read the reports here https://dementiaenquirers.org.uk/individual-projects/ Thanks to @TNLComFund for funding

There's never a good time for this!
#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care https://toolate.blog/2021/05/10/theres-never-a-good-time-for-this/

Calling all #DEEP groups - have you checked out the next round of #DementiaEnquirers grants yet? Great opportunity to get stuck into a project, lead your own research and have some fun together. You should have received an email or contact rachael@myid.org.uk

From today all our tweets come under this one roof

Diverse Dementia Voices from #DementiaEnquirers #DEEP #DementiaDiaries #GettingAlong #DementiaCraftivists & so much more...

don't forget from tomorrow all @DementiaTweets @DementiaVoices tweets will come under the one twitter account - @Innov_Dementia - punching above our weight!
#DementiaDiaries
#DementiaEnquirers
#DementiaCraftivists
#DementiaTipshare
#DEEP
#GettingAlong
#AGoodLifeWithDementia

Still not one attempt at putting this into plain English!

#dementiavoices
#DementiaEnquirers #carers #seniorcare #caregiving #dementiacaregiver #ageuk #care

For Our Eyes Only!

listen and read along, or just listen! When I asked the question: What does ‘Oxidative stress and neuronal energy depletion are characteristic b...

toolate.blog

Fantastic film - congratulations #dementiaenquirers for everything you’re achieving 🌟⭐️