ISTAART Relay Podcast - Partnering with Research Participants PIA

In this Dementia Researcher Podcast episode, Dr Aitana Sogorb Esteve hosts a discussion with Dr Charlie Arber and Sam Crawford from University College London, discussing their work on familial British dementia (FBD), a rare form of dementia affecting only a handful of families. The discussion explores the latest findings from human stem cell models that are helping researchers understand FBD’s unique genetic and pathological features, and how that can inform a wider understanding of familial Alzheimer’s Disease. Topics covered include: - Genetic causes and symptoms of familial British dementia - Use of stem cell models, particularly iPSCs, to study FBD in the lab - Potential biomarkers and implications for therapeutic research - How funding from the Race Against Dementia Ignition Fund is supporting advancements in rare dementia research -- Full biographies on all our guests and a transcript can be found on our website: https://www.dementiaresearcher.nihr.ac.uk Find out more at Race Against Dementia: https://www.raceagainstdementia.com/ -- Like what you see? Please review, like, and share our podcast - and don't forget to subscribe to ensure you never miss an episode . -- This podcast is brought to you by University College London / UCLH NIHR Biomedical Research Centre in association with Alzheimer’s Association, Alzheimer's Research UK, Alzheimer's Society and Race Against Dementia who we thank for their ongoing support. -- Follow us on social media: http://www.instagram.com/dementia_researcher/ http://www.facebook.com/Dementia.Researcher/ http://www.twitter.com/demrescommunity http://www.linkedin.com/company/dementia-researcher http://bsky.app/profile/dementiaresearcher.bsky.social -- Download our new community app: https://onelink.to/dementiaresearcher

Last week Dementia Researcher attended the 34th Alzheimer Europe Conference in Geneva, Switzerland. In this podcast Dr Megan Polden and her guests bring you highlights from the second half of the event, sharing news and their best bits. Dr Megan Polden talks with Dr Aisling Flynn from Bournemouth University and Dr Emma Law from the Scottish Neuroprogressive and Dementia Network and Dr Lukas Duffner from Alzheimer Europe. This year’s Alzheimer Europe Conference, themed 'New Horizons – Innovating for Dementia,' brought together a diverse group of participants, including people living with dementia, carers, volunteers, Alzheimer association staff, policymakers, health and social care professionals, researchers, and academics. It remains a unique platform where the latest advances in fundamental science, care, policy, and public engagement are shared and discussed. Essential links / resources mentioned in the show: Alzheimer Europe - https://www.alzheimer-europe.org INTERDEM - https://interdem.org #34AEC on X - https://bit.ly/4dH3yjw Sex, Gender and Sexuality in the Context of Dementia - https://bit.ly/3UaVuk7 -- You can find out more about our guests and their work on our website. There you will also find a full transcript of the show: https://www.dementiaresearcher.nihr.ac.uk -- Prefer to watch rather than listen? Then check-out our YouTube channel for a full video version of this podcast: https://www.youtube.com/@DementiaResearcher -- Like what you hear? Please review, like, and share our podcast - and don't forget to subscribe to ensure you never miss an episode – and if you prefer to watch rather than listen, you’ll find a video version of this podcast with a transcript on our website. -- This podcast is brought to you by University College London / UCLH NIHR Biomedical Research Centre in association with Alzheimer’s Association, Alzheimer's Research UK, Alzheimer's Society and Race Against Dementia who we thank for their ongoing support. -- Follow us on social media: https://www.instagram.com/dementia_researcher/ https://www.facebook.com/Dementia.Researcher/ https://www.twitter.com/demrescommunity https://www.linkedin.com/company/dementia-researcher https://www.bsky.app/profile/dementiaresearcher.bsky.social -- Download our new community app: https://www.onelink.to/dementiaresearcher -- The views and opinions expressed by guests in this podcast represent those of the guests and do not necessarily reflect those of NIHR Dementia Researchers, University College London or its partner organisations.

Last week Dementia Researcher attended the 34th Alzheimer Europe Conference in Geneva, Switzerland. In this podcast Dr Megan Rose Readman and her guests bring you highlights from event, sharing news and their best bits from the hundreds of posters and talks delivered. Dr Megan Rose Readman talks with Dr Fiona Carragher from Alzheimer’s Society and Dr Andy Northcott from the Geller Institute of Ageing and Memory, University of West London and Dr Sébastien Libert from Alzheimer Europe. This year’s Alzheimer Europe Conference, themed 'New Horizons – Innovating for Dementia,' brought together a diverse group of participants, including people living with dementia, carers, volunteers, Alzheimer association staff, policymakers, health and social care professionals, researchers, and academics. It remains a unique platform where the latest advances in fundamental science, care, policy, and public engagement are shared and discussed. Essential links / resources mentioned in the show: Alzheimer Europe - https://www.alzheimer-europe.org INTERDEM - https://interdem.org #34AEC on X - https://bit.ly/4dH3yjw Carol Jennings Story - https://bit.ly/3ZXPpeJ -- You can find out more about our guests and their work on our website. There you will also find a full transcript of the show: https://www.dementiaresearcher.nihr.ac.uk -- Prefer to watch rather than listen? Then check-out our YouTube channel for a full video version of this podcast: https://www.youtube.com/@DementiaResearcher -- Like what you hear? Please review, like, and share our podcast - and don't forget to subscribe to ensure you never miss an episode – and if you prefer to watch rather than listen, you’ll find a video version of this podcast with a transcript on our website. -- This podcast is brought to you by University College London / UCLH NIHR Biomedical Research Centre in association with Alzheimer’s Association, Alzheimer's Research UK, Alzheimer's Society and Race Against Dementia who we thank for their ongoing support. -- Follow us on social media: https://www.instagram.com/dementia_researcher/ https://www.facebook.com/Dementia.Researcher/ https://www.twitter.com/demrescommunity https://www.linkedin.com/company/dementia-researcher https://www.bsky.app/profile/dementiaresearcher.bsky.social -- Download our new community app: https://www.onelink.to/dementiaresearcher

In this podcast we bring you highlights from the International Society for Frontotemporal Dementias (ISFD) Conference, which was held in Amsterdam from the 19th to 22nd September 2024. Dr Anna Volkmer talks with Dr Martyna Matuszyk from Alzheimer’s Society and Dr Aitana Sogorb Esteve from University College London discussing their highlights and recapping on the event and what they’re taking away from this year’s talks. -- The International Society for Frontotemporal Dementias is a non-profit scientific society focused on frontotemporal dementias. Members include the leaders in FTD research around the world, and the society is associated with a large, international biannual meeting (soon to be annual) presenting the latest findings. For more information visit: https://www.isftd.org -- You can find out more about our guests and their work on our website. There you will also find a full transcript of the show: https://www.dementiaresearcher.nihr.ac.uk -- Prefer to watch rather than listen? Then check-out our YouTube channel for a full video version of this podcast: https://www.youtube.com/@DementiaResearcher -- Like what you hear? Please review, like, and share our podcast - and don't forget to subscribe to ensure you never miss an episode – and if you prefer to watch rather than listen, you’ll find a video version of this podcast with a transcript on our website. -- This podcast is brought to you by University College London / UCLH NIHR Biomedical Research Centre in association with Alzheimer’s Association, Alzheimer's Research UK, Alzheimer's Society and Race Against Dementia who we thank for their ongoing support. -- Follow us on social media: https://www.instagram.com/dementia_researcher/ https://www.facebook.com/Dementia.Researcher/ https://www.twitter.com/demrescommunity https://www.linkedin.com/company/dementia-researcher https://www.bsky.app/profile/dementiaresearcher.bsky.social -- Download our new community app: https://www.onelink.to/dementiaresearcher

In this episode of the Dementia Researcher Podcast, guest host Dr Fiona McLean is joined by Dr Josh Harvey (University of Exeter), Dr Sarah Marzi (King’s College London), Dr Alexi Nott (Imperial College London), and Dr Sam Washer (Wellcome Trust Sanger Institute) to discuss the role of epigenetics in Alzheimer’s and dementia research. The episode offers a broad exploration of epigenetics in neurodegenerative diseases, highlighting how gene regulation beyond DNA sequences is advancing our understanding of Alzheimer’s and related conditions. It covers the impact of environmental and lifestyle factors on disease development, as well as emerging research techniques and technologies that could inform future diagnostic and therapeutic approaches. -- Key Topics: • The fundamentals of epigenetics and its distinction from traditional genetics. • How epigenetic research is shaping our understanding of Alzheimer's disease. • The role of environmental factors in influencing epigenetic changes. • New technologies and their application in epigenetic studies. • The potential for epigenetics in developing future diagnostics and therapies for neurodegenerative diseases. -- Full biographies on all our guests and a transcript can be found on our website: https://www.dementiaresearcher.nihr.ac.uk -- Like what you hear? Please review, like, and share our podcast - and don't forget to subscribe to ensure you never miss an episode – and if you prefer to watch rather than listen, you’ll find a video version of this podcast with a transcript on our website. -- This podcast is brought to you by University College London / UCLH NIHR Biomedical Research Centre in association with Alzheimer’s Association, Alzheimer's Research UK, Alzheimer's Society and Race Against Dementia who we thank for their ongoing support. -- Follow us on social media: http://www.instagram.com/dementia_researcher/ http://www.facebook.com/Dementia.Researcher/ http://www.twitter.com/demrescommunity http://www.linkedin.com/company/dementia-researcher https://bsky.app/profile/dementiaresearcher.bsky.social -- Download our new community app: https://onelink.to/dementiaresearcher

In this episode of the Dementia Researcher podcast, Dr Anna Volkmer leads a discussion on the importance of co-production in dementia research. This episode explores what it truly means to involve people with lived experience, with tips on how to go about it, and our guests own experience in working together. They also discuss the research process and how this approach can lead to more relevant and impactful outcomes. Featured Guests: •Dr Barbora Silarova: An NIHR / Alzheimer’s Society Dem Comm Fellow at the University of Kent. Barbora brings her expertise in supporting people living with dementia and their carers. She shares insights on the significance of equal partnerships in co-produced research and the challenges and rewards of this collaborative approach. •Dr Rosie Ashworth: A researcher who leads patient and public involvement for the NRS Neuroprogressive and Dementia Network in Scotland. Rosie discusses the importance of involving those with lived experience in research to enrich the quality and relevance of scientific findings. •Winnie Henry: A retired psychotherapist who cared for her husband with vascular dementia. Winnie provides a personal perspective on the value of co-production, emphasising empathy and the importance of ensuring that carers' voices are heard in research. •Mike Parish: A retired firefighter who became a carer for his husband, who had progressive supranuclear palsy. Mike highlights the importance of representing diverse experiences and backgrounds in dementia research to ensure all voices are considered. •David Ross: A retired engineer who cared for his wife with frontotemporal dementia. David speaks about his journey into co-production, driven by a desire to understand more about dementia and contribute to meaningful research that reflects the realities faced by carers. -- Essential links / resources mentioned in the show: NHS England Co-production resource toolkit https://www.england.nhs.uk/publication/co-production-resource-toolkit/ Co-Production Collective https://www.coproductioncollective.co.uk/ The Dementia Enquirers Gold Standards for Co-Research https://dementiaenquirers.org.uk/wp-content/uploads/2023/02/gold-standard-for-co-research.pdf DEEP Network - A Story of Co-Production https://www.dementiavoices.org.uk/wp-content/uploads/2020/07/A-story-of-co-production-%E2%80%93-The-Right-to-a-Grand-Day-Out.pdf -- Together, these guests provide valuable insights into the process and benefits of co-produced research, offering practical tips for researchers looking to adopt this approach. Tune in to learn more about how prioritising people can transform the way we approach dementia research. -- Full biographies on all our guests and a transcript can be found on our website: https://www.dementiaresearcher.nihr.ac.uk -- Like what you hear? Please review, like, and share our podcast - and don't forget to subscribe to ensure you never miss an episode – and if you prefer to watch rather than listen, you’ll find a video version of this podcast with a transcript on our website. -- This podcast is brought to you by University College London / UCLH NIHR Biomedical Research Centre in association with Alzheimer’s Association, Alzheimer's Research UK, Alzheimer's Society and Race Against Dementia who we thank for their ongoing support. -- Follow us on social media: http://www.instagram.com/dementia_researcher/ http://www.facebook.com/Dementia.Researcher/ http://www.x.com/demrescommunity http://www.linkedin.com/company/dementia-researcher http://www.bsky.app/profile/dementiaresearcher.bsky.social

In this episode of the Dementia Researcher Podcast, we discuss the challenges and support needs of early career dementia researchers (ECRs) across Europe. Our discussion centres on a recent study titled Supporting Early Career Dementia Researchers: Identifying Support Needs and Ways Forward via a European Study. The study sheds light on the unique difficulties faced by ECRs and offers practical recommendations to enhance professional journeys. -- Speakers: 🔹Adam Smith: Programme Director for Dementia Researcher and today's guest host. 🔹Dr Charlèss Dupont: A postdoctoral researcher at Freie University in Brussels with a background in nursing and communication. Charlès's work primarily focuses on communication and palliative care in dementia. 🔹Dr Pascale Heins: With a background in occupational therapy, Dr. Heins works at Maastricht University, where her research explores ways to support social life in people with dementia. 🔹Dr Sara Laureen Bartles: A postdoctoral researcher at Karolinska Institutet in Stockholm and Maastricht University, Sarah's research spans chronic conditions management, including dementia. -- Key Takeaways: 🔹Funding and Career Support: The study identifies a significant need for better financial support mechanisms, particularly in the transition from PhD to postdoctoral roles. 🔹Work-Life Balance: The pressures of academia often lead to an unhealthy work-life balance, with expectations set by supervisors. The study calls for more proactive support from institutions. 🔹Mentoring and Training: The importance of mentoring and training, both within academia and for careers outside of it, is emphasised as a way to better prepare researchers for diverse career paths. 🔹Dissemination: There is a need for improved dissemination strategies, ensuring that research findings reach a broader audience, including those directly affected by dementia. Tune-in as we explore these critical issues and discuss actionable solutions to support the current and next generation of dementia researchers. -- Essential links / resources mentioned in the show: Supporting early-career dementia researchers: Identifying support needs and ways forward via a European study - https://bit.ly/3WN1yju How are early-career dementia researchers considered and supported on a national level by dementia plans and organizations? An overview of global policy approaches - https://bit.ly/3YMxrLq ISTAART and University College London survey turns a spotlight on early career researcher life and challenges - https://bit.ly/4dMmoWK Join ISTAART - istaart.alz.org Pascal's PhD Defence - https://www.youtube.com/watch?v=CDjURgVH6YM -- Full biographies on all our guests and a transcript can be found on our website: https://www.dementiaresearcher.nihr.ac.uk -- Like what you see? Please review, like, and share our podcast - and don't forget to subscribe to ensure you never miss an episode – and if you prefer to listen rather than listen, you’ll find an audio version of this podcast with a transcript on our website. -- This podcast is brought to you by University College London / UCLH NIHR Biomedical Research Centre in association with Alzheimer’s Association, Alzheimer's Research UK, Alzheimer's Society and Race Against Dementia who we thank for their ongoing support. -- Follow us on social media: http://www.instagram.com/dementia_researcher/ http://www.facebook.com/Dementia.Researcher/ http://twitter.com/demrescommunity http://www.linkedin.com/company/dementia-researcher https://bsky.app/profile/dementiaresearcher.bsky.social

In this podcast we share a few selected highlights from the last day of the Alzheimer’s Association International Conference (AAIC) taking place in Philadelphia and Online, 28th July to 1st August. Quang Tran, Science Communications Officer for Alzheimer's Research UK, guest hosts the show with expert panelists: Dr Shea Andrews, Assistant Professor at University of California San Francisco working on Genetic Epidemiology of Alzheimer’s disease. Dr Joe Butler, NIHR ARC Research Fellow at University of Sunderland, interested in using techniques and paradigms from experimental psychology to learn about brain health. Roberto A. Guzmán Hernández, ISTAART Ambassador, Graduate Research Assistant and PhD Student at Temple University working on the effects of aggregated tau on endothelial and cerebrovascular dysfunction -- The AAIC brings together distinguished basic scientists, clinical researchers, early career investigators, clinicians and the care research community at the largest and most influential international conference on dementia science. They share theories and breakthroughs while exploring opportunities to accelerate work and elevate careers. Main plenary talks from the day included Michael Weiner 'ADNI: Two Decades Of Impact And The Path Forward', Reisa Sperling ' Preclinical Alzheimer’s Disease'. Today was also the first AAIC For ALL, a new format with talks for professional from Jeffrey Cummings on the Therapeutic Landscape, Heather Whitson on The Role Of Blood Tests In Diagnosis And Treatment, Clifford Jack on Criteria For Diagnosis And Staging, Monica Rivera-Mindt on Health Equity And Risk Reduction and Katherine Possin on Dementia Care. Talks for a lay audience from Edward B. Lee on Brain Donation: The Gift Of Knowledge, Hussein Zalzale on The Many Faces Of Alzheimer’s Dementia, Subtypes And Unique Features, Dawn Mechanic-Hamilton on How Can We Improve Cognitive Testing? The Answer May Be In The Palm Of Your Hand, Cerise Elliot on Building Inclusive Alzheimer’s And Related Dementias Research Studies, Wiesje van der Flier on 'Risk Reduction', Jonathan Schott on 'Diagnosis And Treatment', Nancy Hodgson on 'Dementia Care', Ozioma Okonkwo on 'Health Equity'. #AAIC24 -- Find more information on our guests, and a full transcript of this podcast on our website at: www.dementiaresearcher.nihr.ac.uk/podcast -- The views and opinions expressed by guests in this podcast represent those of the guests and do not necessarily reflect those of NIHR Dementia Researchers, PIA membership, ISTAART or the Alzheimer's Association.

In this podcast we share a few selected highlights from the fourth day of the Alzheimer’s Association International Conference (AAIC) taking place in Philadelphia and Online, 28th July to 1st August. Dr Amanda Heslegrave, Principle Research Fellow at University College London, hosts the show with special guests: Dr Darina Petrovsky, Assistant Professor at Duke University Dr Emily Ho, Assistant Professor at Northwestern University Meenakshi Menon, ISTAART Ambassador and incoming PhD student in Cognitive Sciences at Georgia State University The AAIC brings together distinguished basic scientists, clinical researchers, early career investigators, clinicians and the care research community at the largest and most influential international conference on dementia science. They share theories and breakthroughs while exploring opportunities to accelerate work and elevate careers. Main plenary talks from the day included Tara Spires-Jones presenting on 'Synaptic Oligomeric Tau In Alzheimer’s Disease — A Potential Culprit In The Spread Of Tau Pathology Through The Brain ', Ricardo F. Allegri on 'Dementia Research In Low- And Middle-Income Countries: Initiatives That Seize Opportunities, Overcome Challenges And Build Capacity'. #AAIC24 -- Find more information on our guests, and a full transcript of this podcast on our website at: www.dementiaresearcher.nihr.ac.uk/podcast -- The views and opinions expressed by guests in this podcast represent those of the guests and do not necessarily reflect those of NIHR Dementia Researchers, PIA membership, ISTAART or the Alzheimer's Association.

In this podcast we share a few selected highlights from the third day of the Alzheimer’s Association International Conference (AAIC) taking place in Philadelphia and Online, 28th July to 1st August. Caitlyn Fastenau,  PhD Candidate at University of Texas Health San Antonio, hosts the show with special guests: Balogun Wasiu, Postdoctoral Associate at University of Pittsburgh Jessica Caldwell, Director, Women’s Alzheimer’s Movement Prevention and Research Center, Cleveland Clinic Sophia Krix, PhD Student at University of Bonn, working on the ADIS Project The AAIC brings together distinguished basic scientists, clinical researchers, early career investigators, clinicians and the care research community at the largest and most influential international conference on dementia science. They share theories and breakthroughs while exploring opportunities to accelerate work and elevate careers. Main plenary talks from the day included Suvarna Alladi 'Bilingualism And Dementia: Implications For Brain Health And Policy Development', Clive Ballard on 'Psychosis In Alzheimer’s Disease'. #AAIC24 -- Find more information on our guests, and a full transcript of this podcast on our website at: www.dementiaresearcher.nihr.ac.uk/podcast -- The views and opinions expressed by guests in this podcast represent those of the guests and do not necessarily reflect those of NIHR Dementia Researchers, PIA membership, ISTAART or the Alzheimer's Association.