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APPG on Dementia: Prevention - Shared screen with speaker view
Tom Redfearn, Alzheimer's Society
Welcome to the third session of the APPG's inquiry into dementia research and the dementia moonshot. As our co-chair, Debbie Abrahams MP, has said, we'll be focussing today on prevention.
Tom Redfearn, Alzheimer's Society
Panellists will be unable to respond to the chat, but we will ensure any comments shared in the chat are fed in to the inquiry.
Tom Redfearn, Alzheimer's Society
If you tweet, you can find the APPG on Twitter @APPGDementia
Tom Redfearn, Alzheimer's Society
Please do share any thoughts you might have in the chat box (directed at 'All panellists and attendees"). Unfortunately the panel won't be able to respond during the session, but we will ensure all comments and questions are fed in to the inquiry.
Alan G. Richardson
Good range of discussion right from the start. Viewpoints being put over - particularly causes and when occur in past.
Paul Edwards
Last point from Craig is a crucial one I think . There are things we can do now while we continue to ask questions in research
Siobhan Reilly
Big message for memory services? - need to move to brain health and prevention
Dominic Trépel
Good points from all panel about knowing the risk factors and great point from Prof Livingstone on that we ‘don’t know what to do to mitigate risk’. What should be the research strategy to determine the right interventions and, in that strategy, how will we ultimately encourage policymakers to allocate resources to seemingly healthy individuals?
Toby Williamson
If ‘what’s good for your heart is good for your health’ (and vice versa) are there research studies into preventing other conditions e.g. cardiovascular illness, which provide useful learning, and might there be opportunities to join forces with researchers from those fields to design studies that addressed both/several illnesses? And given that health inequalities are affected by wider social and economic factors, how can these be addressed in research? Are there research studies that show improvements in wider public health interventions from these fields, rather than just focusing on changing the behaviours of individuals? Really interesting webinar – thank you.
Tessa Gutteridge
whilst prevention is the optimum, delaying or modifying the course of dementia in those who experience young onset would be of great benefit considering the inadequacy of enabling support for those people and their families
Nicky Taylor
I think the point about applied research that positively impacts people with dementia now, is a critical one. It would be fantastic to prioritise research exploring and harnessing the preventative potential of arts and creative approaches. We know them in practice to provide supportive, socially-connecting, destigmatising and generative processes which offer people with dementia hope and purpose.
Alan G. Richardson
With the head injury scenario from Road Traffic Accidents. Looking back to time when people had head injuries hitting windscreen. With introduction of seat belts, and then airbags in cars - wondering with my health service background - whether there were statistical changes. Sport can also be same with protective measures now and previously.
Jordan Clark, Azheimer's Society
Please do keep on sharing your comments and questions - we'll be collating them for after the session, even if we don't get an opportunity to get to them today.
Eric Deeson
Thanks, Jordan - and best wishes - Eric
Zibiah Loakthar
Our charity Irish in Britain identifies the need for greater research into prevention, caring and experiences of BAME communities. In terms of BAME groups the Irish are often aggregated into the "white" ethnicity category but we feel strongly that there is a need to look at the Irish as a distinct category for a variety of reasons. ypsy Roma and Traveller groups despite lower life expectancy seem to have increasing levels of young age dementia and there is a need too for greater research into young onset dementia and possible psychosocial interventions here.
Tessa Gutteridge
i would echo the need for more research into young onset dementia - in every aspect. Under 65s almost always excluded from research studies - perpetuating low levels of knowledge/expertise.
Eric Deeson
Zibiah's point about Roma needs being missed cos of being lumped under "white" applies also to Ashkenazim (European Jews). We have higher risk of BRCA-related cancers and Parkinson's as well as some dementias.
Siobhan Reilly
Thank you everyone - such an important fascinating discussion.
Somanah Achadoo
Thanks everyone for such an interesting conversation on this subject. Looks like there is amazing progress. However, there's still a lot of work to be done in the under 65's groups and the minority groups. With COVID-19, there is the need for more support. During our conversation on Dementia, we shouldn't forger the role of Carers, the support they need not only in financial term, but also in emotional support. This needs to be looked at during this pandemic. We know it's not a curable disease yet, but the support for people with Dementia and their carers is still paramount.
Toby Williamson
Sharing research data is good in principle but it is complicated because of GDPR and people’s understandable concerns about who else might access data they provide to a research study. If what a person is consenting to in terms of data sharing when they sign up for a research study isn’t clear or too broad, this may put people off participating in research.
Kritika Samsi
Excellent panel and thoughtful discussion; thank you all. Keen to see how longitudinal studies develop and what messages there may be for Black, Asian and minority ethnic groups.
Rosa Hui
Thank you everyone for such an inspiring and interesting discussion on the Prevention of Dementia. I have certainly learned a lot today which would help with my work in Chairing the BAME Dementia Working Group in Bristol. My special thanks to both Tom and Jordan of Alzheimer's Society for the invite. 'Hello' to both Sally and Debbie. Loving seeing you both again today.
Jordan Clark, Azheimer's Society
Thanks to everyone for joining today, and for your comments and questions. Our next session in on June 8th - please keep an eye on our site for updates on how you can join. https://www.alzheimers.org.uk/about-us/policy-and-influencing/all-party-parliamentary-group-dementia
Rebecca Andersen
Fantastic, encouraging discussion. Prevention and reducing risk factors are critical for future. However, for the millions with disease progression that is too far gone for prevention/risk reduction measures to have impact, a disease modifying treatment is required. The TauRx research program targets the tau pathology, thought to be a key component in TBI. Prudent to also point out it is World Clinical Trials day today!
Alan G. Richardson
it is really good to see the Research moving up the agenda - those of us that take part see it as a privilege.
Tom Redfearn, Alzheimer's Society
If you want to be added to the mailing list for the APPG, please email APPGonDementia@alzheimers.org.uk
Eric Deeson
Very interesting and useful - thanks, all, for having me and other lay witnesses! Good luck with the Moonshot, bringing dementia research a tiny bit closer to cancer research as regards funding. AND with persuading GPs to be er more open to research (a problem other health/care charities share, I find) .... Regards - Eric
Kevin White