Have you or someone you know been diagnosed with young onset dementia (onset < age 65)?
We’re conducting a research study on Australian's experiences accessing care and support (e.g. the NDIS) after diagnosis.
Learn more or take part: redcap.sydney.edu.au/surveys/?s=Y...
@fionakumfor.bsky.social
Not all Australians embrace the CCI terminology...but important to evaluate the activity nonetheless!
I'm struck by similarities to losing an intimate partner to dementia - has been described e.g. as 'losing a husband by slow excruciating degrees' (Joyce Carol Oates).
Senior Research Associate role at University of Canberra delivering a co designed national digital platform translating dementia rehabilitation evidence into practice.
www.dementiaresearcher.nihr.ac.uk/job/senior-r...
Great article. Could someone please write an equally good paper arguing 'patients are not consumers'. If only for Australia!
At last....and excellent critique of the way too often cited '17 year gap'.
Mmm. 4am in Australia. Will a recording be available please?
Would love to hear this. Will a recording be available for those of us on the other side of the world?
Indeed. Graphical representations showing 'benefits' don't really reflect the fact that observed differences aren't really clinically meaningful. Australia's TGA hasn't approved lecanemab although has approved donanemab (why?). PBS approval unlikely but pending.
All very difficult for patients and carers to get their heads around.
I look forward to seeing this.
Beautiful pics but may need explanation for those of us without inside knowledge!!
Sounds excellent. Very much needed.
In @science.org today my essay on predicting and preventing Alzheimer's disease (open-access)
www.science.org/doi/10.1126/...
PxP For Patients, By Patients. Virtual Conference. September 9-12 2025.
📢 Save the date! PxP (For Patients, By Patients) is coming back September 9-12, 2025! 🎉
A free, virtual event focused on #PatientEngagement — created by patients, for patients.
💌Stay in the loop: sign up for the PxP newsletter (link in bio).
#PxP25 #ForPatientsByPatients
We're not using the word ‘demented’ anymore." In her new blog, Dr Jodi Watt explains why it's time we let go of this harmful term 👉
www.dementiaresearcher.nihr.ac.uk/blog-why-say...
It was a great pleasure to present at the recent Dementia Training Australia Symposium about the SPICE program among others doing inspiring work. Two of the latest papers here: journals.sagepub.com/doi/10.1177/... journals.sagepub.com/doi/10.1177/... More coming soon! @uccarat.bsky.social
Thrilled to share our new paper that details, for the first time, the co-design of novel medication management information tools for and with people with dementia & carers.
Free in the latest issue of Alzheimer's & Dementia, the journal of @alzassociation.bsky.social doi.org/10.1002/alz.70257
Nearly 12 million Americans provide unpaid care for people with Alzheimer’s or other dementias.
Caring for someone with Alzheimer’s is exceptionally demanding. Repost in support of the nearly 12 million family and friends who provide care to someone with dementia. #AlzheimersInAmerica #ENDALZ
People first.
Patients - in context.
But...'consumers' - please, never!!!
A major paper @nature.com this week found a significant decline in dementia after an outdated Shingles vaccine.
I've reviewed the study and many other relevant ones here
erictopol.substack.com/p/the-shingl...
A great meeting. Thanks for the invitation!
📢 New Language Hub is now live
It's a space to explore how words shape care and support, challenge language that doesn’t belong, and promote more human, inclusive ways of speaking and thinking.
Visit the Language Hub today and share it with your team bit.ly/4iBChCl #LanguageMatters
Our #Thoughtfortheday. People with dementia can read & process information much more easily if things are well written & clearly presented.
But it’s not just people with dementia.
Good writing for people with dementia is good writing for everyone.
www.innovationsindementia.org.uk/wp-content/u...
Excellent initiative. Take note funding bodies in Australia!
Ethical approval generally not necessary if the role is an advisory/partnership role.
Sounds like a good idea to do so! What are your plans re how you will involve them and how you will find the right people?
Looks interesting
A good question. Public contributors to research benefit greatly from attending conferences and make valuable contributions to conferences. Reduced registration fees help. Unless funding built into research project budget, not easy to get funds to cover full costs - in my experience.
