PPIE
Public and Patient Involvement and Engagement (PPIE) is a priority at the Dementia Research Centre.
The Dementia Reseach Centre is committed to building awareness of dementia, its diversity and its human implications, among our fellow clinicians and scientists; and to improving inclusivity and communication in dementia research and care for the wider public, in particular members of under-served communities.
We have convened a dedicated PPIE workforce to harness expertise in PPI, inclusivity and diversity throughout the Centre, with the key aim of increasing co-production and dissemination of our work with the general public.
The following is a list of some patient and public involvement events run by teams at the Dementia Research Centre in recent years. Click on the name of the event to be taken to a more detailed description of the event further down the page.
- (2024, 2025) In2STEM
- (2024) The Jennings vs Alzheimer's
- (2024) How and Why We Should Measure the Type of Dementia and Level of Disease Progression
- (2024) Greengross Arts for Brain Health, Changemaker Conversation
- (2024) Research Poetry
- (2024) Talking Lines
- (2024) Partnership Activities with Sweet Patootee Arts
- (2022) Partnership Activities with WWT London Wetland Centre
- (2021) RDS Creativity Club
In2STEM Summer Placements
In2STEM offers 16-19 year-olds from underrepresented backgrounds summer placements to explore STEM careers and build the skills and confidence to succeed in the field. The Dementia Research Centre has proudly hosted students for a one-week In2STEM placement in both 2024 and 2025.
The students took part in an insightful week, gaining hands-on experience in our labs, connecting with experts, and deepening their understanding of different forms of dementia alongside the latest advancements in technology.
Feedback from the students was overwhelmingly positive. They found the placement very informative and appreciated the chance to discover the diverse career paths available within STEM. Many highlighted how much they enjoyed seeing the collaborative environment of the DRC, noting how the team interacts as a supportive community. Students also expressed that while work experience can be daunting, the welcoming and approachable staff made the experience comfortable, enjoyable, and highly engaging.
Learn more about the In2STEM programme here: https://in2scienceuk.org/our-programmes/in2stem
The Jennings vs Alzheimer's
BBC documentary, The Jennings vs Alzheimer's, shares the story of a very special family and jointly, discoveries made by researchers (including Prof Nick Fox, Dr Cath Mummery, Prof Martin Rossor and colleagues) that have given hope for Alzheimer's disease over the past four decades.
How and Why We Should Measure the Type of Dementia and Level of Disease Progression
This public engagement event held on 17th July 2024 was an interactive educational event for people living with dementia, their carers, their supporters and the public. The focus of this event was dementia sub-typing, which identifies the type of brain disease causing the dementia, and its staging, which looks at the level of disease present. This event was held as part of the Amyloid Dual-biomarker PET for Dementia diagnosis and subtyping (ADAPT DEfEAT) project, funded by the NIHR (NIHR302139).
We had talks from both experts by experience: patients, carers and supporters, as well as experts by profession including Neurologists, Speech & language therapists and research scientists. Following the talks we also had interactive sessions where participants could speak to our experts about medical imaging, subtyping and staging using artificial intelligence (AI), support for those living with dementia and their carers/supporters, and Patient and Public Involvement (PPI).
The event aimed to:
- Educate participants in research in dementia diagnosis and staging
- Share different perspectives on dementia diagnosis
- Inspire people to get involved in research
- Listen to patients, carers, supporters and the public
To listen to the full day of talks you can follow the link here, or select an individual talk below.
On the day of the event we had a variety of interactive sessions that attendees could take part in.
- Experts from the Institute of Nuclear Medicine talked to participants about how we can use Positron Emission Tomography (PET) to diagnose dementia.
- A researcher at the Institute of Nuclear Medicine and Dementia Research Centre explained how we can use artificial intelligence (AI) on Positron Emission Tomograghy (PET) scans to subtype and stage dementia.
- Representatives from the Dyscover charity and Rare Dementia Support spoke to participants about their work.
We got excellent feedback from the participants about what they gained from the event and what they would like researchers to know. This information will feed into future projects and events.
Many thanks to all those who participated in this event, including speakers, volunteers and all those who attended.
Greengross Arts for Brain Health, Changemaker Conversation
RDS clinical lead, Prof Seb Crutch and Rare Space co-ordinator Charlie Harrison chaired an informal series of conversations with RDS members and partner organisations as part of this online event. Learn more about the history and motivations for Rare Space, hear lived experiences of creative adaptation and the arts alongside discussion about social prescribing, access, inclusivity and how to make sustainable change in Creative Health.
Talking Lines
Stories of diagnosis and support as told by those with lived experience of rarer forms of dementia.
Over the past 4 years, an interdisciplinary team of artists, social scientists, neuropsychologists, and people living with or affected by rare dementias have been working together to develop a line-drawing methodology to better understand experiences of rare dementia diagnosis and support.
Talking Lines is a research project which combines both visual and verbal modes of communication, taking the concept of the drawn line as a starting point to promote communication and narrative construction.
Partnership Activities with Sweet Patootee Arts
We are currently undertaking a knowledge exchange with community groups, arts venues, football clubs and dementia networks to learn more about Black British Caribbean Heritage, share information about rare dementias and generate new creative ideas.
This year we’re hoping to develop workshops and activities in Birmingham and London, please visit the link above to find out more.
Partnership Activities with WWT London Wetland Centre
RDS partnered with WWT London Wetland Centre to run a series of activities and events for RDS members. These activities and events were linked to the Wildfowl and Wetland Trust (WWT) and Mental Health Foundation (MHF) Blue Prescribing Project – a six-week nature-based programme at London Wetland Centre offering the opportunity for people to be active, take notice of wildlife and connect with other people in a wetland setting, all with the aim to improve mental health and wellbeing.
A group of ten RDS members came together to pilot these activities for people living with rare dementias and over the course of 6 weeks the group met each Monday and ventured out into the London Wetland Centre – whatever the weather! Luckily the sun came out most days and there were clear skies for spotting birds, cows, sheep, insects and even a lizard! We experimented with a range of activities to help get in touch with the surrounding nature, slow down and explore.
RDS Creativity Club
This online arts group explored people, place and friendship during COVID-19. Members of the group were based around the UK and also joined us from other countries.
Some of the group had a lot of experience with art making whilst others were trying things out for the first time. We sent each of our Creativity Club members a pack of basic art materials and over the weeks we worked on themes such as People, Place and Friendship.
