Supporting Dementia at Home: Insights from PALLDEM
Dementia Researcher Vodcast
06/19/26
•64m
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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.
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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.
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Previous Episode
In this episode, Professor Louise Serpell brings together Dr Niranjan Bose from the Alzheimer's Disease Data Initiative, Jonathan Hoover from the AI company Prima Mente, and Dr Kexin Huang from Stanford University and Biomni AD. They discuss the Alzheimer’s Insights AI Prize and what agentic AI could mean for the future of dementia research.
We hear about the Alzheimer’s Disease Data Initiative and AD Workbench, and their role in making research data more accessible, usable and secure. The conversation also looks at how the Alzheimer’s Insights AI Prize could help researchers make better use of that data, turning complex resources into practical tools for discovery.
Kexin introduces Biomni AD, an AI research assistant designed to help scientists develop questions, bring data together and move from ideas to results more efficiently. Jonathan introduces Parthenon and Athena, a virtual wet lab system that helps researchers model cell states, test perturbations and plan experiments.
Together, the guests consider how AI can support researchers without replacing human judgement, and why confidence in using these tools is likely to become an important skill for dementia researchers.
Essential Links:
- Sign up for AD Workbench
- Learn more about the AD Data Initiative
- Learn more about the Alzheimer's Insights AI Prize
- Prima Mente
- Biomni-AD
In this episode:
- AI can support researchers by helping with data, workflows and experimental planning, but it still needs human judgement, review and validation.
- AD Workbench from Alzheimer's Disease Data Initiative is helping make dementia research data more accessible, usable and secure, giving researchers better ways to work across complex datasets.
- Agentic AI could help researchers move more quickly from a research question to an analysis plan, useful evidence or a possible experiment.
- Biomni AD, Parthenon and Athena show how AI tools are becoming more specialised, from research assistants to virtual wet lab systems.
- AI literacy is likely to become an important skill for dementia researchers, including those without coding or data science backgrounds.
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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...
Next Episode
Relay Podcast - Technology and Dementia PIA
June 29
•36m
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/
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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 Healt...
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