Rare Dementia Support Impact Study

5-year research project investigating the impact of @RareDementia Support (RDS) group services for individuals living with, or affected by, rare dementias

[Rare Dementia Support Impact Study @RDS_ImpactStudy]

Our Impact researchers @SamRossiHarries & Emma Harding present Talking Lines - portraying @RareDementia experiences through a single line 📈📉🖋️✏️
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33rd Alzheimer’s Europe Conference, Helsinki #33AEC @Harrison_CR @PaulCamic @DrMPSullivan @DrTGrillo

[Céline El Baou @celbaou]

What can we learn from language use in rare dementia caregivers support groups? Come and find out at P2-606! #AAIC2023 @RDS_ImpactStudy @RareDementia Oliver Hayes, @embrotherhood @CJHardy Emma Harding and Seb Crutch

[Dr Emilie Brotherhood @embrotherhood]

How rare is #raredementia? Check out our @RDS_ImpactStudy rapid review led and presented by Ollie Hayes at #AAIC23 @ P1-796 👇👇
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Co-authors @celbaou @KeirYong @PaulCamic & Prof. Seb Crutch

[Dr Aida Suarez-Gonzalez @Aida_Suarez_]

We co-produced an online 💻educational programme for supporters of people living with:
- #PCA
- #bvFTD
- #PPA

Come check the results of our feasibility trial! 👉 Online Poster 75329 👈
#AAIC23 @RareDementia @AmberJohn715 @PaulCamic @DrMPSullivan @HoareZoe @embrotherhood

[Dr Emilie Brotherhood @embrotherhood]

Feasibility results from our @RDS_ImpactStudy - the online 💻 Better Living trial 💻 led by @Aida_Suarez_ and developed with supporters of people living with #PPA
#PCA and #FTD 👇

[The Times and Sunday Times @thetimes]

The boss of the food chain Iceland will climb Everest to raise money for a new treatment centre for people suffering from rare early-onset dementia https://t.co/dRJihYffyU

[Eva Tait @TaitEva]

Thank you @icelandrichard @KentonCool and @BearGrylls for everything you are doing to inspire and promote this incredible journey towards the summit of Everest and the world’s 1st @RareDementia Support Centre

[RareDementiaSupport @RareDementia]

Delighted to announce the launch of ‘Dementia and Hope’ from @Innov_Dementia for #onedementiavoice - a free resource setting out the collective vision of a group of dementia orgs inc. RDS ✨ featuring contributions from @drcionucl’s Prof Seb Crutch + @MillievdBW + Trish O’Hara

[Rare Dementia Support Impact Study @RDS_ImpactStudy]

Research poetry from the @RareDementia Support Impact study - link below to hear ‘A Glass Half Full’ read by poet @wilsonlawrence7

[Dr Aida Suarez-Gonzalez @Aida_Suarez_]

Our @RDS_ImpactStudy clinical trial protocol is live. We are testing a blended (online+human) programme to support families of people living with:

🔸Posterior Cortical Atrophy
🔸Primary Progressive Aphasia
🔸behaviour variant FTD.

Learn more about it 👇

https://t.co/diKUZT2XJg

[Rare Dementia Support Impact Study @RDS_ImpactStudy]

Check out our latest #protocolpaper led by @c_waddington + published in @JMIR_ this week 🤩 outlining #codesign, delivery + how we are evaluating the impact of videoconference-based @RareDementia Support group discussions @jmirpub @drcionucl @UCL_ECRs

[Claire Waddington @c_waddington]

Excited to share the recent @RDS_ImpactStudy protocol paper on the @RareDementia videoconferencing #supportgroups aiming to connect people affected by a rare #dementia #dementiaresearch https://t.co/vpcNkguBvT

[Dr Aida Suarez-Gonzalez @Aida_Suarez_]

Josh Stott form @ADAPTlabUCL will be talking at the #FTD @RareDementia meeting about our "Better Living with bvFTD".

This is a 6 module training course #Coproduced with families of people with #bvFTD.

@rdscanada @isftd @RDS_ImpactStudy @ftdnews @AFTDHope

[NW Dementia Network @NWDemNetwork]

#diagnosis #dementia #Cymru #Wales?

We want to hear from you: https://t.co/7UazWE2htg

Share your experiences to make a difference to others in the future. Thank you

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Hoffem glywed gennych: https://t.co/7o63psB9t3

Rhannwch eich profiadau i helpu eraill yn y dyfodol. Diolch

[The National Brain Appeal @BrainAppeal]

🔊Actor, director & Headliner #HarrietWalter with a wonderful reading from @RareDementia's new poetry book #ThereIsSoMuchICouldSay - all created by members of the @RDS_ImpactStudy

Available ➡️ https://t.co/E6zgDsj3Of #DementiaActionWeek2022 #DAW2022

[Young Dementia Network @YoungDemNetwork]

As the theme of Dementia Awareness Week this year is diagnosis, we wanted to share this young onset #dementia diagnosis related fact with you. Let us know how long it took to get your diagnosis, or that of your family member.

[Rare Dementia Support Impact Study @RDS_ImpactStudy]

🏴󠁧󠁢󠁷󠁬󠁳󠁿#Diagnosis #dementia yn #Cymru?🏴󠁧󠁢󠁷󠁬󠁳󠁿

Hoffem glywed gennych: https://t.co/pPSuFScFft

Rhannwch eich profiadau, beth sy'n gweithio, beth sydd angen ei wella, i wneud gwahaniaeth i eraill yn y dyfodol #DementiaActionWeek #DAW2022 @AlzheimersCymru @talkolderpeople @CadrProgramme

[Rare Dementia Support Impact Study @RDS_ImpactStudy]

🏴󠁧󠁢󠁷󠁬󠁳󠁿#Diagnosis of #dementia in #Wales?🏴󠁧󠁢󠁷󠁬󠁳󠁿
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We want to hear from you: https://t.co/EM8T7LVB4X
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Share your experiences - what works, what needs improving - to make a difference to others in the future #DementiaActionWeek #DAW2022 @AlzheimersCymru @talkolderpeople @CadrProgramme

[Rare Dementia Support Impact Study @RDS_ImpactStudy]

@NWDemNetwork @AlzheimersCymru @talkolderpeople @CadrProgramme @BangorUni @PublicHealthW @dsdcwales @ResearchWales @BrainAppeal @embrotherhood @medicalbangor @prifysgolbangor @BangorWalesNews @SeicolegBangor @tide_carers @DementiaVoices @AgeCymru @agecymruGaM @AgeCymruGwent @AgeCymruDyfed @AgeCymruWG @Agecymrupowys @CatrinHedd @mason4233 @TeresaD41196035 @jaynegoodrick @CymruDeep @nigel8812922 @SHSBangor Thanks @NWDemNetwork!

[Rare Dementia Support Impact Study @RDS_ImpactStudy]

🏴󠁧󠁢󠁷󠁬󠁳󠁿#Diagnosis #dementia yn #Cymru?🏴󠁧󠁢󠁷󠁬󠁳󠁿

Hoffem glywed gennych: https://t.co/pPSuFScFft

Rhannwch eich profiadau, beth sy'n gweithio, beth sydd angen ei wella, i wneud gwahaniaeth i eraill yn y dyfodol #DementiaActionWeek #DAW2022 @AlzheimersCymru @talkolderpeople @CadrProgramme

[Rare Dementia Support Impact Study @RDS_ImpactStudy]

🏴󠁧󠁢󠁷󠁬󠁳󠁿#Diagnosis of #dementia in #Wales?🏴󠁧󠁢󠁷󠁬󠁳󠁿
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We want to hear from you: https://t.co/EM8T7LVB4X
•
Share your experiences - what works, what needs improving - to make a difference to others in the future #DementiaActionWeek #DAW2022 @AlzheimersCymru @talkolderpeople @CadrProgramme