The 33rd Alzheimer Europe Conference (#33AEC) themed “New opportunities in dementia care, policy and research” was formally opened on 16 October 2023. The conference took place as a hybrid event, with delegates and presenters able to join either on site at the Messukeskus Helsinki Expo and Convention Centre or online, with the aim of ensuring the event is as accessible, inclusive and interactive as possible. A record number of over 1,100 participants (1,000 of these in person) from 48 countries attended the conference, which took place from 16 to 18 October 2023.
During the conference Dementia Researcher worked with Alzheimer Europe to interview members of their European Working Group of People with Dementia (EWGPWD) and European Dementia Carers Working Group (EDCWG). They played a key role in the event, and were at the heart of both deciding on the conference programming in in delivering key sessions.
We aked them about their work with Alzheimer Europe, their roles in the event and gained insights into their backgrounds, and live living with dementia or caring for a loved one.
During the 2023 Alzheimer Europe Conference Adam Smith, Dementia Researcher Programme Director interviewed members of Alzheimer Europe's European Working Group of People with Dementia (EWPWD), and the European Dementia Carers Working Group (EDCWG).
In this show we hear from Chris Roberts and Pia Knudsen.
Chris is from Wales in the UK and is the Chair of the European Working Group of People with Dementia. He was diagnosed with early onset mixed dementia (vascular and Alzheimer’s) in 2012, in his early 50’s. He is an Honorary Lecturer and Honorary Fellow at Bangor University, co-founder of the 3 Nations Dementia Working Group and contributes to several different expert groups.
Pia is from Aarhus, Denmark. She is 59 years old and has a son and a daughter. She is educated as a visual artist, designer and teacher and was diagnosed with Alzheimer’s dementia in 2020 and is a member of the European Working Group of People with Dementia. Additionally, she has been involved in speaking at the Parliament in Denmark, as an ambassador of dementia in Aarhus, in public media activities and has participated in lectures with the Danish Alzheimer’s Association.
For more information about Alzheimer Europe, its work, and how to get involved visit:
https://www.alzheimer-europe.org/
@AlzheimerEurope #33AEC #alzheimerdisease #alzheimer #dementia #helsinki #chrisroberts #PiaKnudsen
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00:00 Introductions
03:19 Introducing the European Working Group of People with Dementia & its work
05:52 Why Pia got involved in the EWGPWD
07:07 Influencing policy and care at home and acorss Europe
08:43 EWGPWD delivering its on 33AEC Plenary Session
10:25 How the EWGPWD approached organising 33AEC sessions
11:23 Reflecting on the EWGPWD Plenary
15:18 What's it like presenting to such a large audience?
16:53 Roundup and Goodbyes
0
YouTube Video UExlVUkxR0hCNEV2Um1GNFJPSVVqb1g1TEpJeGRQMG11My4wOTA3OTZBNzVEMTUzOTMy
Postcards from Alzheimer Europe 2023 - Chris Roberts and Pia Knudsen
Dementia Researcher
14/11/2023 4:09 pm
During the 2023 Alzheimer Europe Conference Adam Smith, Dementia Researcher Programme Director interviewed members of Alzheimer Europe's European Working Group of People with Dementia (EWPWD), and the European Dementia Carers Working Group (EDCWG).
In this show we hear from Sonata Mačiulskytė and Trevor Salomon.
Sonata lives in Klaipeda, in the Western part of Lithuania and is the Chair of the EDCWG, she is also a board member of “Dementia Lithuania”. This involvement was inspired when her mother was diagnosed with Parkinson’s disease and started experiencing symptoms of pre-dementia in 2015, and as a result Sonata became her caregiver. Away from that Sonata was awarded a doctoral degree in Social Sciences and currently serves as the vice-rector of a university and is chairwoman of the national committee that forms the higher education policy in her country.
Trevor Salomon is the Vice-Chair of the EDCWG and lives in Northwest London. Following a career as an international marketer director in business software, Trevor chose to step away from his role in 2011 when it became evident, he needed to devote time to his wife, Yvonne, who has started to experience memory problems. She would eventually go on to be diagnosed with young onset Alzheimer’s disease at the age of just 57 and is now a care home resident. Trevor supports other carers and always with a positive, decisive outlook on life. He is a regular speaker at events and in the media, helping to raise awareness about those living with dementia and the challenges faced by family members who support them.
For more information about Alzheimer Europe, its work, and how to get involved visit:
https://www.alzheimer-europe.org/
@AlzheimerEurope #33AEC
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00:00 Introductions
03:46 Introduction to the European Dementia Carers Working Group
06:17 Experience of working within the group
08:10 Trevor's story and journey to the EDCWG
10:15 Sonata's story and journey to the EDCWG
11:57 Reflecting on their roles at the conference
17:59 What should areas should be addressed as a priority in Dementia
18:57 Roundup and Goodbyes
3
YouTube Video UExlVUkxR0hCNEV2Um1GNFJPSVVqb1g1TEpJeGRQMG11My41MjE1MkI0OTQ2QzJGNzNG
Postcards from Alzheimer Europe 2023 - Sonata Mačiulskytė and Trevor Salomon
Dementia Researcher
14/11/2023 4:09 pm
During the 2023 Alzheimer Europe Conference Adam Smith, Dementia Researcher Programme Director interviewed members of Alzheimer Europe's European Working Group of People with Dementia (EWPWD), and the European Dementia Carers Working Group (EDCWG).
In this show we hear from Kevin Quaid & Lieselotte Klotz.
Kevin Quaid is from Limerick and was diagnosed with Lewy Body Dementia in 2017 aged 53, after being diagnosed firstly with Parkinson's. He is a member of the Irish Dementia Working Group as well as Vice Chair of the EWGPWD and co-founder of Lewy Body Ireland. Many of you will already know Kevin through his brilliant books ‘Lewy Body Dementia Survival and Me’ and ‘I am KEVIN not Lewy’ (available in all good bookshops).
Lieselotte Klotz is a wife, mother, daughter, sister, aunt, friend, and passionate sailor. She lives next to the German Baltic Sea near Schwerin and Rostock. She was diagnosed in 2017 with Lewy Body Dementia, but before that, she worked in the IT sector having founded her own company and then working as managing director and strategic manager. She is a member of the EWGPWD, an active volunteer at the Alzheimer Society Berlin and a member of the Advisory Board of the German Alzheimer Society.
For more information about Alzheimer Europe, its work, and how to get involved visit:
https://www.alzheimer-europe.org/
@AlzheimerEurope #33AEC #dementia #alzheimerdisease #AlzheimerEurope #DementiaResearch #Helsinki #adamsmith #LieselotteKlotz #KevinQuaid
Resources Mentioned in the show:
Having Conversations with someone living with dementia:
https://www.scie.org.uk/dementia/after-diagnosis/communication/conversation.asp
Books by Kevin Quaid
https://www.goodreads.com/author/show/18277721.Kevin_Quaid
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00:00 Introductions
02:14 Living with Lewy body dementia (LBD)
06:13 About Alzheimer Europe
06:53 How Kevin & Lilo got involved with Alzheimer Europe
11:04 Sharing experiences as conference speakers
15:58 National dementia strategies & listening to people with lived experience
19:48 Listening to people living with dementia
21:09 What area of research needs more attention?
25:41 Roundup and Goodbyes
2
YouTube Video UExlVUkxR0hCNEV2Um1GNFJPSVVqb1g1TEpJeGRQMG11My41NkI0NEY2RDEwNTU3Q0M2
Postcards from Alzheimer Europe 2023 - Kevin Quaid & Lieselotte Klotz
Dementia Researcher
14/11/2023 4:09 pm
Postcards from Alzheimer Europe 2023 - Petri Lampinen & Anna Rosenberg
Dementia Researcher
14/11/2023 5:17 pm
Guests
Chris Roberts is from Wales in the UK and is the Chair of the European Working Group of People with Dementia. He was diagnosed with early onset mixed dementia (vascular and Alzheimer’s) in 2012, in his early 50’s. He is an Honorary Lecturer and Honorary Fellow at Bangor University, co-founder of the 3 Nations Dementia Working Group and contributes to several different expert groups.
Pia Knudsen is from Aarhus, Denmark. She is 59 years old and has a son and a daughter. She is educated as a visual artist, designer and teacher and was diagnosed with Alzheimer’s dementia in 2020 and is a member of the European Working Group of People with Dementia. Additionally, she has been involved in speaking at the Parliament in Denmark, as an ambassador of dementia in Aarhus, in public media activities and has participated in lectures with the Danish Alzheimer’s Association.
Dr Sonata Mačiulskytė lives in Klaipeda, in the Western part of Lithuania and is the Chair of the EDCWG, she is also a board member of “Dementia Lithuania”. This involvement was inspired when her mother was diagnosed with Parkinson’s disease and started experiencing symptoms of pre-dementia in 2015, and as a result Sonata became her caregiver. Away from that Sonata was awarded a doctoral degree in Social Sciences and currently serves as the vice-rector of a university and is chairwoman of the national committee that forms the higher education policy in her country.
Trevor Salomon is the Vice-Chair of the EDCWG and lives in Northwest London. Following a career as an international marketer director in business software, Trevor chose to step away from his role in 2011 when it became evident, he needed to devote time to his wife, Yvonne, who has started to experience memory problems. She would eventually go on to be diagnosed with young onset Alzheimer’s disease at the age of just 57 and is now a care home resident. Trevor supports other carers and always with a positive, decisive outlook on life. He is a regular speaker at events and in the media, helping to raise awareness about those living with dementia and the challenges faced by family members who support them.
Kevin Quaid is from Limerick and was diagnosed with Lewy Body Dementia in 2017 aged 53, after being diagnosed firstly with Parkinson’s. He is a member of the Irish Dementia Working Group as well as Vice Chair of the EWGPWD and co-founder of Lewy Body Ireland. Many of you will already know Kevin through his brilliant books ‘Lewy Body Dementia Survival and Me’ and ‘I am KEVIN not Lewy’ (available in all good bookshops).
Lieselotte Klotz is a wife, mother, daughter, sister, aunt, friend, and passionate sailor. She lives next to the German Baltic Sea near Schwerin and Rostock. She was diagnosed in 2017 with Lewy Body Dementia, but before that, she worked in the IT sector having founded her own company and then working as managing director and strategic manager. She is a member of the EWGPWD, an active volunteer at the Alzheimer Society Berlin and a member of the Advisory Board of the German Alzheimer Society.
Petri Lampinen lives in Finland and is a member of the EWGPWD. He was diagnosed with Fronto-Temporal Dementia (FTD) in 2015 and since then, he has been working to raise awareness about dementia and to educate health and care professionals in Finland about FTD and what it is like to live with this less common type of dementia.
Dr Anna Rosenberg is a senior researcher at the Finnish Institute for Health and Welfare and Karolinska Institute, Sweden. Her research interest is dementia prevention, and she participates in Public Involvement activities for research projects in this field.
Host
Adam Smith
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Adam Smith
