Dementia Researcher Vodcast

Welcome to the seventh season of the Dementia Researcher X ISTAART PIA Relay Podcast. Across six episodes, leading early career and senior researchers hand the mic from one ISTAART PIA to the next, giving you an honest, peer-to-peer tour of where dementia research is actually heading, from wearables and biomarkers to policy and trial design, in the run-up to AAIC.
Lewy body pathology shows up in roughly 30% of the brains of people who had dementia, yet it gets diagnosed in only about 5% of cases. Closing that gap has shaped much of Dr Joe Kane's career. Joe is a geriatric psychiatrist at Queen's University Belfast and outgoing Chair of the ISTAART Lewy Body Dementias PIA, and with host Dr Patrick Lao he traces his work from the Diamond Lewy programme to consensus diagnostic guidelines built by Delphi process. They discuss the symptoms clinicians often miss because they don't think to ask, from constipation to loss of smell, the cardiac scans and seed amplification assays now detecting pathology in CSF and even skin, and the TOP HAT trial repurposing an anti-sickness drug for hallucinations. Joe makes the case for a Lewy body specific rating scale, explains why the prodrome may be psychiatric or delirium rather than cognitive, and runs through the PIA's biggest AAIC programme in years, including a PIA Day panel on seed amplification assays.
Takeaways
Lewy body dementia is heavily underdiagnosed: pathology appears in about 30% of brains but is diagnosed in around 5%.
Much of the disease shows outside the brain, in constipation, blood pressure and smell, so it gets missed if nobody asks.
Seed amplification assays, now usable on CSF and even a small skin biopsy, are changing how the pathology is detected.
Trials can fail on the wrong yardstick, which is why the PIA is building a Lewy body specific rating scale.
The prodrome is not only cognitive; the first sign can be depression, psychosis or delirium, and those gaps need data.

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The Alzheimer’s Association International Society to Advance Alzheimer’s Research and Treatment (ISTAART) convenes the global Alzheimer’s and dementia science community. Members share knowledge, fuel collaboration and advance research to find more effective ways to detect, treat and prevent Alzheimer’s and other dementias. Professional Interest Areas (PIA) are an assembly of ISTAART members with common subspecialties or interests.
There are currently 30 PIAs covering a wide range of interests and fields, from Neuroimaging to Diversity and Disparities and everything in between.
Find out more at https://istaart.alz.org/
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A transcript of this show, links and show notes and profile on all our guests are available on our website at https://www.dementiaresearcher.nihr.ac.uk.
If you prefer to watch rather than listen, you will find a video version of this podcast on Apple Podcasts, YouTube, and on our website.
Leave us a tip:
https://dementia-researcher.captivate.fm/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://bsky.app/profile/dementiaresearcher.bsky.social

Download and Register with our Community App:
https://www.onelink.to/dementiaresearcher
We gratefully acknowledge the support of our funders: Alzheimer’s Association, Race Against Dementia, Alzheimer’s Research UK, Alzheimer’s Society, and the National Institute for Health and Care Research.
The views and opinions expressed by guests in this podcast are their own and do not necessarily reflect those of the producers, funders, or sponsors.
Subscribe to our sister show 'Dementia Researcher The Blogs':
https://podfollow.com/dementia-researcher-blogs

Welcome to the seventh season of the Dementia Researcher X ISTAART PIA Relay Podcast. Across six episodes, leading early career and senior researchers hand the mic from one ISTAART PIA to the next, giving you an honest, peer-to-peer tour of where dementia research is actually heading, from wearables and biomarkers to policy and trial design, in the run-up to AAIC.
Almost everyone born with Down syndrome overproduces the amyloid precursor protein from birth, which makes it one of the clearest natural windows we have into how Alzheimer's begins. Dr Patrick Lao, Assistant Professor at Columbia and Programmes Chair of the ISTAART Down Syndrome and Alzheimer's Disease PIA, comes from a medical physics background and uses multimodal neuroimaging to map the disease across its genetic and sporadic forms. With host Lillian Morgado, he explains amyloid and tau PET, Thal phases and Braak staging, and how chronological age can stand in for disease stage in this population, with a typical symptom onset around 54. They talk about why people with Down syndrome were long left out of anti-amyloid trials and how that is now changing, and the risk and resilience research asking why some people fall off the expected timeline. Patrick also previews the PIA's AAIC PIA Day session on returning results, plus the separate DSAD/ADAD conference coming to London next year.
Takeaways
Genetic forms of Alzheimer's, including Down syndrome, let researchers study the earliest disease pathways before symptoms appear.
In Down syndrome, chronological age can approximate disease stage, with symptoms typically expected around age 54.
Imaging shows where amyloid and tau sit in the brain, the spatial detail a blood test cannot give.
People with Down syndrome were historically excluded from anti-amyloid trials; that is shifting, with a lecanemab safety extension now underway.
Not everyone follows the population timeline, and risk and resilience work asks what pushes onset earlier or later.

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The Alzheimer’s Association International Society to Advance Alzheimer’s Research and Treatment (ISTAART) convenes the global Alzheimer’s and dementia science community. Members share knowledge, fuel collaboration and advance research to find more effective ways to detect, treat and prevent Alzheimer’s and other dementias. Professional Interest Areas (PIA) are an assembly of ISTAART members with common subspecialties or interests.
There are currently 30 PIAs covering a wide range of interests and fields, from Neuroimaging to Diversity and Disparities and everything in between.
Find out more at https://istaart.alz.org/
--
A transcript of this show, links and show notes and profile on all our guests are available on our website at https://www.dementiaresearcher.nihr.ac.uk.
If you prefer to watch rather than listen, you will find a video version of this podcast on Apple Podcasts, YouTube, and on our website.
Leave us a tip:
https://dementia-researcher.captivate.fm/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://bsky.app/profile/dementiaresearcher.bsky.social

Download and Register with our Community App:
https://www.onelink.to/dementiaresearcher
We gratefully acknowledge the support of our funders: Alzheimer’s Association, Race Against Dementia, Alzheimer’s Research UK, Alzheimer’s Society, and the National Institute for Health and Care Research.
The views and opinions expressed by guests in this podcast are their own and do not necessarily reflect those of the producers, funders, or sponsors.
Subscribe to our sister show 'Dementia Researcher The Blogs':
https://podfollow.com/dementia-researcher-blogs

Welcome to the seventh season of the Dementia Researcher X ISTAART PIA Relay Podcast. Across six episodes, leading early career and senior researchers hand the mic from one ISTAART PIA to the next, giving you an honest, peer-to-peer tour of where dementia research is actually heading, from wearables and biomarkers to policy and trial design, in the run-up to AAIC.
If we cured Alzheimer's tomorrow but did no work on cost, distribution or access, we would have cured it only for the richest people in the world. That line from Lillian Morgado sits at the centre of this episode. Lillian is a research coordinator at Georgia State University and Communications Chair of the ISTAART Health Policy PIA, working mainly in qualitative research and legal epidemiology. With host Dr Vanessa Young, she talks through what qualitative work actually involves, her research on caregivers and people with dementia in the justice system, and the question that opened up next: what happens to someone with no caregiver to advocate for them. They get into why AI and blood-based biomarkers are as much policy problems as scientific ones, how regulation differs across borders, and why policy is the bridge that decides whether science reaches the people it was meant for. Lillian also runs through the Health Policy PIA's busy week at AAIC, from PIA Day to a featured research session on dementia care across countries.
Takeaways
Policy is the bridge from the lab to the patient; without it, a breakthrough only reaches the few who can already afford care.
Qualitative interviews and coding surface the right questions before the big quantitative money goes in.
Caregivers matter enormously when someone with dementia meets the justice system, which raises the question of those who have none.
AI and blood-based biomarkers carry legal and access questions, and the rules differ between, say, the US and Europe under GDPR.
You do not join a PIA because you already belong; you belong because you get involved, and you need not be an expert to contribute.

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The Alzheimer’s Association International Society to Advance Alzheimer’s Research and Treatment (ISTAART) convenes the global Alzheimer’s and dementia science community. Members share knowledge, fuel collaboration and advance research to find more effective ways to detect, treat and prevent Alzheimer’s and other dementias. Professional Interest Areas (PIA) are an assembly of ISTAART members with common subspecialties or interests.
There are currently 30 PIAs covering a wide range of interests and fields, from Neuroimaging to Diversity and Disparities and everything in between.
Find out more at https://istaart.alz.org/
--
A transcript of this show, links and show notes and profile on all our guests are available on our website at https://www.dementiaresearcher.nihr.ac.uk.
If you prefer to watch rather than listen, you will find a video version of this podcast on Apple Podcasts, YouTube, and on our website.
Leave us a tip:
https://dementia-researcher.captivate.fm/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://bsky.app/profile/dementiaresearcher.bsky.social

Download and Register with our Community App:
https://www.onelink.to/dementiaresearcher
We gratefully acknowledge the support of our funders: Alzheimer’s Association, Race Against Dementia, Alzheimer’s Research UK, Alzheimer’s Society, and the National Institute for Health and Care Research.
The views and opinions expressed by guests in this podcast are their own and do not necessarily reflect those of the producers, funders, or sponsors.
Subscribe to our sister show 'Dementia Researcher The Blogs':
https://podfollow.com/dementia-researcher-blogs

Welcome to the seventh season of the Dementia Researcher X ISTAART PIA Relay Podcast. Across six episodes, leading early career and senior researchers hand the mic from one ISTAART PIA to the next, giving you an honest, peer-to-peer tour of where dementia research is actually heading, from wearables and biomarkers to policy and trial design, in the run-up to AAIC.
Sleep might be one of the earliest windows we have into brain health, and Dr Vanessa Young thinks the way we measure it is about to change. Fresh from finishing her PhD in May, Vanessa is a postdoc at the Glenn Biggs Institute and Communications Chair of the Technology and Dementia PIA. She studies sleep and the ageing brain, where the relationship seems to run both ways: as dementia develops, sleep gets worse, and poor sleep may feed back into the disease. With host Dr Carla Abdelnour, she gets into digital biomarkers, why wearables let you capture sleep continuously at home rather than in a one-off sleep study, and the move from wearables to "nearables", bed sensors and room radar that ask nothing of the participant at all. They also cover the analysis headache that comes with years of continuous data, the equity problem when a study needs home Wi-Fi, and what the PIA has planned for its full-day AAIC preconference on AI.
Takeaways
Sleep and dementia feed each other, so sleep is worth studying as somewhere we might actually step in and help.
Wearables capture sleep night after night at home, which reaches people who live nowhere near a big sleep centre.
The field is shifting from wearables to "nearables", sensors in the mattress or radar in the room, to cut participant burden and bias.
Years of continuous data brings its own problem: telling meaningful signal apart from background noise.
If a study needs Wi-Fi to send its data, it quietly excludes people, so digital equity has to be designed in.

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The Alzheimer’s Association International Society to Advance Alzheimer’s Research and Treatment (ISTAART) convenes the global Alzheimer’s and dementia science community. Members share knowledge, fuel collaboration and advance research to find more effective ways to detect, treat and prevent Alzheimer’s and other dementias. Professional Interest Areas (PIA) are an assembly of ISTAART members with common subspecialties or interests.
There are currently 30 PIAs covering a wide range of interests and fields, from Neuroimaging to Diversity and Disparities and everything in between.
Find out more at https://istaart.alz.org/
--
A transcript of this show, links and show notes and profile on all our guests are available on our website at https://www.dementiaresearcher.nihr.ac.uk.
If you prefer to watch rather than listen, you will find a video version of this podcast on Apple Podcasts, YouTube, and on our website.
Leave us a tip:
https://dementia-researcher.captivate.fm/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://bsky.app/profile/dementiaresearcher.bsky.social

Download and Register with our Community App:
https://www.onelink.to/dementiaresearcher
We gratefully acknowledge the support of our funders: Alzheimer’s Association, Race Against Dementia, Alzheimer’s Research UK, Alzheimer’s Society, and the National Institute for Health and Care Research.
The views and opinions expressed by guests in this podcast are their own and do not necessarily reflect those of the producers, funders, or sponsors.
Subscribe to our sister show 'Dementia Researcher The Blogs':
https://podfollow.com/dementia-researcher-blogs

Most people with dementia live, and many die, at home. The person who knows them best in those final months is often not a clinician but a home care worker coming through the door several times a day, doing some of the hardest work in the dementia pathway with little training and almost no research behind them. This episode asks what good home care actually looks like, why it is so hard to deliver, and what one study is doing about it.
Host Dr Alice Carstairs is joined by the PALLDEM Homecare team from the Cicely Saunders Institute at King's College London: Dr Lesley Williamson, who co-leads the study; research assistant Annika Dhawan, who runs the engagement work; and Dr Clare Ellis-Smith, who developed the IPOS Dem outcome measure. They are joined by lived experience expert Alan Richardson, who cared for his mother for 15 years, and Tony O'Flaherty, director at Home Instead Wandsworth, Lambeth and Dulwich.
Together they cover what IPOS Dem is, why home care gets so little attention, what it really takes to get a tool used on the ground, and why recognition for this workforce is overdue.
Essential Links:
Famileo - https://bit.ly/FamileoDR26
PALLDEM-Homecare - https://bit.ly/4e6bdvd
IPOS-Dem - https://bit.ly/4vJgkaA

Key topics:
Role of home care workers in dementia support
Implementation of iPOSDEM in home care settings
Challenges and solutions in home care for dementia
Research and innovation in community dementia care

This episode is sponsored by Famileo. Helping families living with dementia stay close with a personalised printed magazine, delivered monthly. Over a quarter of a million families already use Famileo to stay connected. First month free with code DR26. https://bit.ly/FamileoDR26
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A transcript of this show, links and show notes and profile on all our guests are available on our website at https://www.dementiaresearcher.nihr.ac.uk.
If you prefer to watch rather than listen, you will find a video version of this podcast on Apple Podcasts, YouTube, and on our website.
Leave us a tip:
https://dementia-researcher.captivate.fm/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://bsky.app/profile/dementiaresearcher.bsky.social

Download and Register with our Community App:
https://www.onelink.to/dementiaresearcher
We gratefully acknowledge the support of our funders: Alzheimer’s Association, Race Against Dementia, Alzheimer’s Research UK, Alzheimer’s Society, and the National Institute for Health and Care Research.
The views and opinions expressed by guests in this podcast are their own and do not necessarily reflect those of the producers, funders, or sponsors.
Subscribe to our sister show 'Dementia Researcher The Blogs':
https://podfollow.com/dementia-researcher-blogs
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This podcast is sponsored by Famileo. The sponsor had no involvement in the planning, production, editorial decisions, or content of this episode.