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Podcasts

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

This podcast, made in May 2021,  includes a number of DEEP groups plus several of the Dementia Enquirers Pioneers. They discuss the first round of research reports which have just been published, and reflect on what is has meant to them to be ‘in the driving seat’.

Topics explored included: new skills; teamwork; control; Covid adjustments; support skills.

podcast3

“How do we feel about our involvement as Pioneers in Dementia Enquirers, towards the mid-point of the programme?”

This short podcast, made in February 2020, involves Wendy, Dory, George, Howard, Agnes and Mhari. The main message is that “it’s worth being tired to help to change things” (Dory).

Topics explored included: exhaustion; enthusiasm; empowerment; change-making; allies; being part of it all.

podcast2

“Leading our own research – what can people with dementia and people from other disability movements learn from each other?”

This podcast draws on an online discussion chaired by Professor Tom Shakespeare on 3 December 2019 (International Day of Persons with Disabilities). Five of the sixteen people involved are living with dementia.

Topics explored included: issues of labelling and stigma; the social model; time for relationship building and process; survivor research access; control; emancipatory research; authentic coproduction; ethics; power imbalances; funding structures; co-authoring and publication; representativeness; convincing evidence.

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What does it mean to be ‘in the driving seat of research’?

This podcast draws on a lightly-facilitated discussion involving Dementia Enquirers’ Pioneers and Advisors at Woodbrooke in Birmingham, July 2019. Five of the ten people involved are living with dementia.

Topics explored included: opportunities to present on and publish research; learning for each other; demystifying research methods; inclusion, cliques and reasonable adjustments; control and self-esteem; accessible language; passion and partiality; co-production, support and collaboration.

    Twitter

.@george_rook wonder if this might be of interest? #GP #DementiaEnquirers

Great Friday morning catch-up w @JamesRuFletcher @OfficialUoM about 'unethical ethics' in relation to research involving ppl w #dementia

Do take a look at his paper https://bit.ly/3FLODEn

#DementiaEnquirers @TNLComFund @TommyShakes @DrRAshworth

Do you live with dementia in the UK?

Do you give unpaid care?

Every person living with dementia is entitled to an Annual Dementia Review with GP.

Please tell us if you do…or if you don’t

Complete our short survey.

https://www.surveymonkey.com/r/HB9YNMX

#dementiaenquirers
#RiversidersDEEP

You should get an annual dementia review with your GP or staff.

Do you? Many have not had one. We need to know how many?

Please complete our survey if you have or have not had an annual review.

http://surveymonkey.com/r/HB9YNMX

#RiversidersDEEP
#dementiaenquirers

What impact has #COVID19 had on my connections
with others?

We're thrilled to publish this latest #DementiaEnquirers report - carried out by #DEEP group Kent Forget-me-Nots.

Read it here: https://bit.ly/3pzLjXI

@TNLComFund

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 🌟⭐️