Living with Lewy

Online Registration Form

The experience of people living with Lewy body dementia is so important to both the research agenda and to improving clinical practice. The conference will have a distinct strand that is aimed at people living with LBD and their families and carers, and you will be supported to attend and participate, either in person or virtually. 

If you are a person living with Lewy body dementia or a carer and are considering attending the conference, these are the benefits that you will experience:

  • Hear the latest research developments and the progress we are making in diagnosing and managing Lewy body dementia, and find out how you can participate in research.
  • Have the opportunity to meet and network with other people living with dementia and their carers, who will understand what you are going through.
  • Hear inspirational speakers who can help you build resilience and maintain positivity as you live with the impact of Lewy body dementia. 

An international organising committee, led by The Lewy Body Society, is working together to design the Living with Lewy strand of the event, and to ensure that the voices of people living with LBD and carers is integrated as part of the main agenda.   

To keep up to date with further information on Living with Lewy, please sign up to The Lewy Body Society's newsletter here.

                 REGISTER NOW


Living with Lewy Programme

The Full programme is below and can also be viewed as PDF  

DAY 1: Wednesday June 15th 2022




12:45 – 1:00 PM

Welcome to Conference

The Lewy Body Society

1:00 – 1:15 PM

Welcome to Newcastle

Dr Lynne Corner

1:15 - 2:15 PM


2.15 - 3.45 PM

Empowerment through Information
Session Co-Chairs: Norma Loeb & Jose Gigante

2:15 – 2:20 PM

Introduction to Lewy Body Dementia

Rachel Thompson

2:20 – 2:35 PM

Is my brain playing tricks on me? - Understanding visual –perceptual changes, hallucinations, and delusions in Lewy body dementia

Rachel Thompson

2:35 – 2:50 PM

Sleep – lived experience 

Kevin Quaid

2:50 – 3:05 PM

Taste of Yoga

Sidsel McKeith

3:05 – 3:20 PM

Motor symptoms/ Therapies

Dr Jennifer Goldman
Shirley Ryan – Ability Lab

3:20 - 3:35 PM

Mood & Cognition – Lived experience

Chris Maddocks

3:35 - 3:45 PM

Panel Discussion


3:45 - 4:15 PM


4.15 - 5.30 PM

Joint Plenary with Scientific Strand
Session Co-Chairs: Prof Alan Thomas (Newcastle, UK) and Jacqui Cannon (Lewy Body Society, UK)

4:15 - 4:45 PM

DLB: Past, Present and Future

Prof John O’Brien (Cambridge, UK)

4:45 - 5:15 PM

Lewy body dementia:  the invisible monster

Susan Williams (San Francisco, USA)

5:15 - 5:30 PM

Launch of International Coalition of Lewy Body Charities

Lewy Body Society (Ashley Bayston & Dr Lynne Corner)

6:00pm - 8:00pm

Drinks Reception at Baltic Centre for Contemporary Art


DAY 2: Thursday June 16th 2022




08:45 – 09:00 AM


The Lewy Body Society

09:00 - 11.00 AM

Hope through Research
Session Co-Chairs: Julia Wood & Prof Blanc

09:00 - 09:15 AM

Goal orientated Cognitive Rehabilitation

John Hindle /Linda Clare

09:15 - 09:30 AM

Prodromal stage of dementia with Lewy bodies: cognitive and symptom progression

Prof Blanc

09:30 - 09:45 AM

(1) Virtual Tour of the Toon
(2) Book Launch: All about Lewy Bodies, a children’s book created for The Lewy Body Society by award winning author Alex Winstanley

Ashley Bayston
Alex Winstanley

09:45 - 10:00 AM



10:00 - 10:15 AM

Research – Biomarkers

Dr Marzena Kurzawa-Akanbi

10:15 - 10:30 AM


Prof John- Paul Taylor

10:30 - 11:00 AM

Panel Discussion


11:00 - 11:45 AM


11.45 - 1.15PM

Connection Through Community
Session Co-Chairs: Catherine Butcher & Janice Clasper

11:45 - 12:00 PM

Choir – The Forget Me Nots

Karen Meenan – Lewy Body Ireland

12:00 - 12:15 PM

Lewy Body – Spanish Community

Jose Gigante

12:15 - 12:30 PM

The (possible) impact(s) of Lewy Body Disease on carers

Emmanuel Monfort - Senior lecturer, Univ Grenoble Alpes, TIMC laboratory

12:30 - 12:45 PM

Lewy Body Canada

Tim Hudson

12:45 - 1:15 PM

Panel Discussion


1:15 - 2:15 PM


2:15 - 3.45PM

Lewy Body Organisations
Session Co-Chairs: Ashley Bayston & Dr Lynne Corner

2:15 - 2:30 PM

The Admiral Nurse Service

Rachel Thompson

2:30 - 2:45 PM

LBDA – Lewy Body Dementia Association

Julia Wood

2:45 - 3:00 PM

Lewy Body Society

Jacqueline Cannon

3:00 - 3:15 PM

Lewy Body Dementia Resource Center New York

Norma Loeb

3:15 - 3:30 PM

Lewy Body Ireland

Karen Meenan

3:30 - 3:45 PM

Lewy Body Society - France

Sylvie Seuret – von Zeppelin

3:45 - 4:15 PM


4:15 PM



Living with Lewy programme pdf PDF 159Kb

ILDB Conference 2022 Living with Lewy Programme