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Final Report

EAHC Conference Grant Nr: 2013 43 02

Acronym:

24 AEC Title:

24th AE Conference: Dignity and autonomy in dementia

Authors:

Jean Georges Date:

31 January 2015

Final Report – EAHC Conference Grant 2013 43 02 24th AE Conference: Dignity and autonomy in dementia

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Table of Contents - After finalising your report, please update the Table of contents (right click on the

table of content and select "Update Field")

Table of Contents .............................................................................................. 2 Declaration by the conference coordinator ............................................................ 4 Specification of the project ................................................................................. 5 Acknowledgements ............................................................................................ 6 Final Publishable Executive Summary ................................................................... 7

Impressions from the 24th Alzheimer Europe Conference..................................... 9 Initial scope of the Conference ...........................................................................10

Background and conference scope ...................................................................10 Objectives of the conference ...........................................................................10 Targeted participants .....................................................................................11

Deliverables of the conference ...........................................................................13 Deliverable 01: ..............................................................................................13 Deliverable 02: ..............................................................................................13 Deliverable 03: ..............................................................................................13 Deliverable 04: ..............................................................................................14 Deliverable 05: ..............................................................................................14 Deliverable 06: ..............................................................................................15 Deliverable 07: ..............................................................................................15

Steering Committee ..........................................................................................16 Composition ..................................................................................................16 Short description of work ................................................................................16 Problems and changes occurred .......................................................................16

Scientific Committee .........................................................................................18 Composition ..................................................................................................18 Short description of work ................................................................................18 Problems and changes occurred .......................................................................19

Conference implementation ...............................................................................20 Final Conference programme ...........................................................................20

Monday, 20 October 2014 ............................................................................20 Tuesday, 21 October 2014 ...........................................................................21 Wednesday, 22 October 2014 .......................................................................30

Organisation and planning ..............................................................................40 Participants ...................................................................................................40 Sponsorship ..................................................................................................43 Marketing and dissemination ...........................................................................44 Financial management ....................................................................................44

Post-conference follow-up ..................................................................................45 Dissemination activities after the conference .....................................................45

Conference website .....................................................................................45 Publication, Abstracts, Articles ......................................................................46

Evaluation of the conference ...........................................................................47 Participant feedback ....................................................................................47 Process evaluation ......................................................................................49 Output evaluation .......................................................................................49 Outcome evaluation ....................................................................................50

Discussion in relation to conference objectives ..................................................50 Major results and key findings .........................................................................51 Target groups and added value .......................................................................53 Major problems and lessons learned .................................................................53 Future recommendations ................................................................................54


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Further remarks ...............................................................................................55


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Declaration by the conference coordinator

I, as conference coordinator of this conference grant and in line with the obligations

stated in the Grant Agreement declare that:

The report represents an accurate description of the work carried out under

this conference grant for this reporting period;

To my best knowledge, the financial statements that are being submitted as

part of this report are in line with the actual work carried out and are

consistent with the report on the resources used for the project and, if

applicable, with the certificate of the financial statement.

Name of the conference coordinator:

Jean GEORGES, Executive Director

....................................................................

Signature:

....................................................................

Date:

Luxembourg, 31 January, 2015

....................................................................


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Specification of the project

Conference title: 24th Alzheimer Conference: Dignity and autonomy in

dementia

Acronym:

24AEC

Date(s) of the

Conference:

20-22 October 2014

Starting date of the

grant agreement:

1 January 2014

Duration of the grant

agreement (in

months):

12 months

EC co-funding:

EUR 100,000

Priority area:

Sub-action:

Action:

Main partner

information and

contact person:

Alzheimer Europe

Jean GEORGES, Executive Director

Keywords (using MESH terms:

1. dementia

2. Alzheimer’s disease

3. caregivers

4. perceptions

5. quality of life


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Acknowledgements

The 24th Alzheimer Europe Conference in Glasgow, Scotland, UK received funding from

the European Union, in the framework of the Public Health Programme.


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Final Publishable Executive Summary This is a comprehensive summary of your conference. It should be formatted to be

printed as a stand-alone paper document - extending to a maximum of three

pages- to reach a wide audience, including the general public. Kindly ensure that it

is of suitable quality to enable direct publication by EAHC.

Please structure your executive summary as follows:

- A summary description of the conference scope and objectives (general and

specific).

- A description of the work done, including programme, evaluation and

dissemination activities.

- The final results in terms of outputs and outcomes, and their potential impact and

use by the target group (including benefits).

- The strategic relevance and contribution to the EU Health Programme.

- Conclusions and recommendations.

- Please include available diagrams or photos illustrating the work of the conference.

The theme of Alzheimer Europe’s 2014 conference was “Dignity and autonomy in

dementia”. Held in Glasgow, Scotland, UK, this international conference brought

together 832 delegates from 40 countries representing a wide range of backgrounds

within the field of dementia (including people with dementia, carers, national and

international policy makers, healthcare professionals, researchers and national

Alzheimer associations). Participants were able to choose from over 160 presentations

in plenary (dedicated to a rights-based approach to dementia, dementia policies and

strategies, involving people with dementia and innovation in care) and parallel

sessions, special symposia and workshops. People with dementia actively took part as

presenters in both the plenary and parallel sessions.

The conference opened with welcome speeches by Heike von Lützau-Hohlbein and

Henry Simmons, the respective Chairs of Alzheimer Europe and Alzheimer Scotland.

They were followed by Jeanette Maitland from the National Dementia Carers Action

Network and Henry Rankin, Chair of the Scottish Dementia Working Group. In turn,

they described their groups’ efforts to support carers of people with dementia and to

readjust to daily life after a diagnosis of dementia. Geoff Huggins, Acting Director of

Health and Social Care Integration in the Scottish Government, was the keynote

speaker for the evening. His presentation, “A rights based approach to developing and

implementing Scotland’s National Dementia Strategy”, highlighted many aspects of

the strategy that was first implemented in 2008. The opening ceremony concluded

with the official signing of the Glasgow Declaration by the speakers and also John

Laurie, Convener of Alzheimer Scotland.

On the following day, the first plenary session was chaired by Charles Scerri, General

Secretary of the Malta Dementia Society, with a focus on “Promoting a rights-based

approach to dementia”. Colin McKay, Chief Executive of the Mental Welfare

Commission for Scotland, presented Scotland’s national human rights plan and its

implications for people with dementia. He was followed by Matthias Kloth,

Administrator in the Directorate General of Human Rights and Rule of Law of the

Council of Europe. He spoke about the organisation’s promotion of human rights of

older persons, including activities of the European Court of Human Rights. Grainne

McGettrick, Manager for Research and Policy Advocacy at Acquired Brain Injury

Ireland, presented the UN Disability Convention as an instrument for people with

dementia and their carers. The last speaker was Maja Groff, Senior Legal Officer at the

Permanent Bureau of the Hague Conference on Private International Law. Ms Groff


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spoke about globalisation and the protection of vulnerable adults abroad, including

various solutions offered by the Hague 2000 Convention.

The second plenary session, chaired by Henry Simmons, consisted of presentations

and a round table discussion on dementia strategies and policies. Alex Neil, Scotland’s

Cabinet Secretary for Health and Wellbeing, opened the session with a rousing speech

about the importance of involving people with dementia in all aspects of policymaking.

He also became the first European Minister to sign the Glasgow Declaration. The next

speaker was Jürgen Scheftlein, Policy Officer in the European Commission’s

Directorate-General for Health and Consumers. He gave an overview of EU policies on

dementia, such as the ALCOVE project and EIP-AHA - the European Innovation

Partnership on Active and Healthy Ageing.

Mr Simmons then presented the participants of the round table discussion: Geoff

Huggins, Dorothée Knauf-Hübel (Head of the Division de la Médecine Curative at the

Luxembourg Ministry of Health), Benoit Lavallart (responsible for the French Alzheimer

plan among the Ministries of Health, Social Affairs and Research), Charles Scerri and

Marc Wortmann (Executive Director of ADI). They discussed the challenges of sharing

best practices among countries that have varying cultures and definitions of patient

needs and expectations. They also spoke about implementing dementia strategies in

small countries such as Luxembourg and Malta. The panellists agreed that a successful

dementia strategy requires political commitment at the highest levels, including long-

term funding. Finally, they expressed their support for the Glasgow Declaration: a

European Dementia Strategy would clearly be beneficial in countries that lack a

strategy, but also as a benchmark where strategies are already in place.

Plenary session 3 focused on involving people with dementia and was chaired by

Daphne Wallace, who is living with dementia herself. The first speaker was Helga

Rohra, Chair of the European Working Group of People with Dementia (EWGPWD),

who spoke about the changes in how people with dementia are perceived since her

own diagnosis seven years ago. She was followed by Amy Dalrymple (Head of Policy

for Alzheimer Scotland) who explained how the organisation’s “8 Pillars Model” is

developing into an integrated health and social care model of support for people with

dementia. Marie-Jo Guisset from the Fondation Médéric Alzheimer presented the

activities of EFID, the European Foundations Initiative on Dementia. She focused on

the “EFID Awards”, a campaign to reward local initiatives that promote social inclusion

of people with dementia. The final speaker was Prof Myrra Vernooij-Dassen, Director

of Nijmegen Alzheimer Centre in the Netherlands. She presented INTERDEM - a

European network of researchers on early detection and psycho-social interventions in

dementia - and expanded on the group’s current focus on dignity and the role of

stigma in dementia.

The last plenary session was chaired by Henry Simmons and concentrated on

innovation and care. Prof Debbie Tolson, Director of the Alzheimer Scotland Centre for

Policy and Practice, showed examples of practice innovation in policy development,

evidence-informed care and enabling the work force to become agents of change. She

was followed by Dianne Gove, Director of Projects for Alzheimer Europe, who

presented AE’s new report on improving continence care for people with dementia

living at home. Hugh Masters, interim Associate Chief Nursing Officer for Scotland,

explained how specialist nurses and dementia champions are driving change in acute

hospital care for people with dementia. The final presentation was made by Dr Kai

Saks, Associate Professor of Internal Medicine at the University of Tartu, Estonia. She

presented the findings of the “RightTimePlaceCare” project, which developed best

practices for the transition from formal professional home care to institutional long-

term nursing care facilities.


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Conference delegates were also able to attend 28 parallel sessions about legal, ethical

and scientific aspects of living with dementia, including four sessions dedicated to

Alzheimer Scotland’s activities. In addition, three special symposia focused on clinical

trials, nutrition and cognitive function and the activities of the EWGPWD.

The conference ended with an invitation to attend the 25th Alzheimer Europe

Conference in Slovenia. This was followed by closing remarks from Henry Simmons

and Iva Holmerova, Vice-Chairperson of Alzheimer Europe. The 24th Alzheimer Europe

Conference received funding from the European Union in the framework of the Public

Health programme.

The conference evaluation carried out by Alzheimer Europe amongst 92 of the

participating delegates revealed that 96.47% of participants would recommend this

conference to their colleagues.

All presentations, as well as videos of keynote speakers are available for download at:

http://www.alzheimer-europe.org/Conferences/Previous-conferences/2014-Glasgow.

Impressions from the 24th Alzheimer Europe Conference

Geoff Huggins speaks at the

Opening Ceremony The first signatories of the

Glasgow Declaration Welcome Reception at #24AEC

Alex Neil, Scotland’s Cabinet Secretary for Health and Wellbeing

Nina Baláčková and Helga Rohra at the EWGPWD Special Symposium

Some of the 170 posters presented during the conference

Štefanija Lukič Zlobec invites delegates to next year’s AE conference in Slovenia

Henry Simmons closes the Conference

Thank you for signing the Glasgow Declaration!

http://www.alzheimer-europe.org/Conferences/Previous-conferences/2014-Glasgow


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Initial scope of the Conference

Background and conference scope

Purpose of the conference (including scientific background)

- Please copy from Grant Agreement, Annex I

Dementia is undoubtedly one of the key public health challenges of the 21st century.

The recent Commission Communication on a European initiative on Alzheimer's

disease and other dementias states that "the importance of these conditions has long

been recognised at a European level".

According to work carried out by Alzheimer Europe's Commission financed project

"European collaboration on dementia - EuroCoDe", it is possible to estimate the

number of people living with a form of dementia in the EU in 2006 at 7.3. million. With

the ageing of European populations, this number is expected to double in Western

Europe and treble in Eastern Europe by 2050.

A number of challenges have been identified by Alzheimer Europe and its member

organisations which are common to all EU countries:

A recent survey by Alzheimer Europe identified Alzheimer's disease as the

disease the public was most afraid of getting after cancer,

A carers' survey by Alzheimer Europe highlighted that one in five carers spent

more than ten hours a day caring for the person with dementia (one in two

carers for carers of people in the later stages of dementia) and scientific

literature consistently reports on high levels of carer burden and carer

depression,

Dementia is often associated with stigma and both people with dementia and

their carers face discrimination and social exclusion,

Alzheimer's disease remains underdiagnosed and there are significant delays in

diagnosis with carers of people with dementia reporting times of between ten

and 32 months from the apparition of symptoms to receiving a diagnosis,

Interesting care approaches exist, but often these are not shared between or

even within countries,

Symptomatic treatment exists for Alzheimer's disease, but despite increased

research, no new treatments have been identified to halt or slow the progression

of the disease,

A number of EU countries have developed or are in the process of developing

dementia strategies. An exchange on dementia policies and their implementation

would be helpful on a European level.

The purpose of the 24th Alzheimer Europe Conference in Glasgow is therefore to

inform on pilot projects and to exchange best practices in the above fields to help

people with dementia and their carers live better in a dementia friendly society.

Objectives of the conference


The Conference is fully in line with the areas singled out in the Commission

Communication on a European initiative on Alzheimer's disease for greater EU


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collaboration, namely 1. Acting early to diagnose dementia, 2. A shared European

effort in research, 3. National solidarity and exchange of best care practices, 4.

Respecting the rights of people with dementia.

In addition, the Conference supports key aspects of the European Innovation

Partnership on Active and Healthy Ageing in the fields of Integrated care, Prevention,

Age friendly society and Innovative solutions.

In order to support the actions outlined above, the 24th AE Conference will focus on

and organise an exchange of information, experiences, projects and best practices in

the following areas:

1. Rights (rights and responsibilities, proxy decision making, consent and advance

directives, ethical issues), 2. Policy (dementia strategies, post diagnostic support,

socio-economic cost of dementia, prevention), 3. People with dementia (involving

people with dementia, peer support groups, dementia friendly communities,

perceptions and image of dementia), 4. Care (home care, residential care, hospital

care, palliative care).

In all areas, AE will identify keynote speakers to provide state of the art presentations

on the current knowledge and understanding, whilst inviting presenters to submit

abstracts on ongoing and recently finalised research, projects and experiences.

In addition, AE will collaborate with EU funded initiatives to share the progress and

results of research initiatives of programmes and projects like the Joint Programme for

Neurodegenerative Diseases Research, the Joint Action (ALCOVE-Alzheimer

COoperation and Valuation in Europe), projects supported under the FP7 and AAL

Programmes and by the Innovative Medicines Initiative.

Targeted participants


Due to the multi-disciplinary approach chosen for AE Conferences, the programme is

targeted at different audiences. AE hopes to attract health care professionals,

researchers, academics and people involved in Alzheimer associations, but also public

health professionals, policy makers and people with dementia and their carers.

At the 22nd Alzheimer Europe Conference in Vienna, there were 518 participants

which could be broken down as follows: 167 Alzheimer association staff and

volunteers, 157 health and social care professionals, 104 academics and researchers,

44 persons with dementia and carers, 31 industry representatives and 15 policy

makers and civil servants.

Thanks to its extensive network of national member organisations and its collaboration

with other professional organisations (European Memory Clinics Association, European

Association of Geriatric Psychiatry, the European Federation of Neurological Societies,

the Interdem Network, the European Alzheimer's Disease Consortium, the European

Union Geriatric Medicine Society and the International Association of Gerontology -

European Union), AE hopes to disseminate information on the conference to the

different professional networks and nationalities.

A unique feature of AE Conferences is the involvement of people with dementia as

speakers and participants and AE has created a special bursary system to encourage

their participation. AE will waive the registration fees of all people with dementia


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registered via their national associations and cover the travel and accommodation

costs for ten people with dementia to attend the conference (including those of their

carer if necessary). At past conferences, AE was able to provide free places to carers

and people with dementia from the host country through support obtained from

foundations and will also seek this type of support for its 24th conference. AE will

investigate the possibility of providing a reduced rate to students.

Expected impact and outcomes of the conference


The focus of the conference on the priority areas identified by the European

Innovation Partnership on Active and Healthy Ageing and the Commission

Communication on a European Alzheimer's initiative will ensure the relevance of the

programme for other EU initiatives, in particular the Joint Programme on

Neurodegenerative Diseases Research.

The conference will also be a platform to analyse EU actions in the field of dementia.

The conference will therefore be a vital opportunity to support Commission services in

developing follow-up actions to the European Alzheimer's initiative and the Joint Action

on dementia (ALCOVE).

In addition, speakers and presenters will be asked to present recommendations for

future actions in the framework of the public health programme and other EU

programmes. The conference will not just be limited to analysing past activities, but

also contribute to the preparations of future work plans of the Public Health

programme.

The collaboration of AE with other specialised European networks (European

Association of Geriatric Psychiatry, the European Federation of Neurological Societies,

the INTERDEM Network, the European Alzheimer's Disease Consortium, the European

Union Geriatric Medicine Society and the International Association of Gerontology -

European Union) will ensure that analyses and recommendations cover a broad

spectrum of views and perspectives.


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Deliverables of the conference - Please fill the table for each deliverable in the grant agreement

- Please delete respective subsections, if your grant agreement foresees less than

10 deliverables

Deliverable 01:

Title of deliverable First announcement and call for abstracts

Deliverable number in

grant agreement

1

Nature

(eg. report, book, website

etc.)

Information tool

Delivery date to EAHC January 2014

Specific remarks on this

deliverable

An e-mail announcement was sent out by Alzheimer

Europe to all contacts on its mailing list. The first

conference announcement and call for abstracts was

followed up by reminders about important deadlines

and updates on the preparations of the conference

Can the deliverable be

published at EAHC's

project database?

Yes

Deliverable 02:

Title of deliverable Conference Website


grant agreement

2

Nature


etc.)

Website

Delivery date to EAHC The section of the website dedicated to the 24th AE

Conference was launched in January 2014


deliverable

A section of the existing Alzheimer Europe website was

dedicated to the 24th AE Conference in Glasgow,

Scotland, UK.


published at EAHC's

project database?

Yes

Deliverable 03:

Title of deliverable Second announcement and preliminary

programme


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grant agreement

3

Nature


etc.)

Information tool

Delivery date to EAHC May 2014


deliverable

The second announcement and preliminary

programme were sent out as part of the regular e-mail

alerts and updates about the preparations of the

Conference.


published at EAHC's

project database?

Yes

Deliverable 04:

Title of deliverable Conference programme and book of abstracts


grant agreement

4

Nature


etc.)

Programme book

Delivery date to EAHC Copies of the programme book and book of abstracts

are included with the report.


deliverable

The programme and book of abstracts were

distributed to all participants at the AE Conference.

Programme and abstracts were also included on the

website section dedicated to the AE Conference in

Glasgow, Scotland, UK.


published at EAHC's

project database?

Yes

Deliverable 05:

Title of deliverable Conference presentations


grant agreement

5

Nature


etc.)

Powerpoint presentations in PDF

Delivery date to EAHC PDF versions of the Powerpoint presentations were

included on the AE website in December 2014


deliverable

PDF versions of Powerpoint presentations were

included in the website section dedicated to the AE

Conference in Glasgow, Scotland, UK. AE only included


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presentations of authors who had expressly authorised

AE to do so.


published at EAHC's

project database?

Yes

Deliverable 06:

Title of deliverable Conference videos


grant agreement

6

Nature


etc.)

Videos

Delivery date to EAHC Videos of keynote lecturers at the AE Conference in

Glasgow, Scotland, UK were included on the AE

website in December 2014 and January 2015.


deliverable

Videos of keynote lectures were included in the

website section dedicated to the AE Conference in

Glasgow, Scotland, UK. AE only included videos of

presenters who had expressly authorised AE to do so.


published at EAHC's

project database?

Yes

Deliverable 07:

Title of deliverable Final report


grant agreement

7

Nature


etc.)

Report

Delivery date to EAHC The report on the 24th AE Conference in Glasgow,

Scotland, UK was submitted to the EAHC in February

2015.


deliverable

None


published at EAHC's

project database?

Yes


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Steering Committee

Composition

- Please list the committee members, their institution, country and tasks (You may

copy this from the grant agreement, but please adapt in case changes have taken

place).

The following experts were asked to participate in the Steering Committee (referred to

as Organising Committee on the AE website):

Jean Georges, Alzheimer Europe, Luxembourg (Overall project management,

financial administration and reporting, fundraising, contacts with scientific

committee)

Gwladys Guillory, Alzheimer Europe, Luxembourg (Contacts with conference

venue, professional conference organiser, suppliers, speakers and participants)

Iva Holmerová, Czech Alzheimer's Society, Czech Republic (Contacts with

scientific organisations and conferences)

Charles Scerri, Malta Dementia Society, Malta (Input and advice as conference

co-organiser in 2013)

Henry Simmons, Alzheimer Scotland, United Kingdom (Link with scientific

committee, contacts with local policy makers and suppliers, development of

social programme)

Kirsty Wilson, Alzheimer Scotland, United Kingdom (Contacts with local policy

makers and suppliers, development of social programme)

Short description of work

- Please shortly describe the work and activities of that committee

The organising committee communicated via e-mail and was updated on any

significant developments in the planning and organisation of the AE Conference in

Glasgow, Scotland, UK. The members provided input on keynote speakers, social

programme, policy makers to involve, dissemination activities and the evaluation of

the conference.

In addition, AE reported regularly to the AE Board which was tasked with monitoring

the expenditure and income for the conference.

Problems and changes occurred

- Please describe which problems occurred in the work of this committee and how

they have been overcome.

- Please describe which changes occurred to this committee compared to the grant

agreement and out of which reason they occurred.

With regard to membership of the committee, the only change concerned the

involvement of Armelle Leperre-Desplanques who decided not to take part in the

organising committee due to her move from the Haute Autorité de Santé.

No problems arose as to the work of the committee. Solutions proposed by AE staff to

address specific issues (determination of registration fees, organisation of welcome


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reception or gala dinner, invitation of keynote speakers, collaboration with other

organisations, identification of sponsors, etc.) were approved in a consensual fashion.


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Scientific Committee

Composition

- Please list the committee members, their institution, country and tasks (You may

copy this from the grant agreement, but please adapt in case changes have taken

place).

The following experts agreed to join the Scientific Committee (referred to as

Programme Committee on the AE website and conference publications):

Chairperson:

Mr Henry Simmons, Alzheimer Scotland, Edinburgh, Scotland, United Kingdom

Members

Mrs Annette DUMAS, Alzheimer Europe, Brussels, Belgium

Prof. Miguel A. FRANCO, Intras Foundation, Zamora, Spain

Dr Brenda FREDERIKS, VU University Medical Center, Amsterdam, The

Netherlands

Dr Dianne GOVE, Alzheimer Europe, Luxembourg, Luxembourg

Ms Sirkkaliisa HEIMONEN, Ikäinstituutti - The Age Institute, Helsinki, Finland

Prof. Iva HOLMEROVA, Gerontologické Centrum, Prague, Czech Republic

Mr Geoff HUGGINS, Scottish Government, Edinburgh, Scotland, United Kingdom

Prof. Andrzej KIEJNA, Wroclaw Medical University, Wroclaw, Poland

Dr Benoit LAVALLART, Ministry of Health - French Alzheimer Plan, Paris, France

Ms Štefanija LUKIC-ZLOBEC, Slovenian Alzheimer’s Society, Ljubljana, Slovenia

Mr Henry RANKIN, Scottish Dementia Working Group, Glasgow, Scotland, United

Kingdom

Ms Helga ROHRA, European Working Group of People with Dementia (EWGPWD),

Munich, Germany

Mr James PEARSON, Alzheimer Scotland, Glasgow, Scotland, United Kingdom

Dr Charles SCERRI, Malta Dementia Society - University of Malta, Msida, Malta

Dr Sigurd SPARR, University of Northern Norway (The arctic university), Tromsø,

Norway

Prof. Debbie TOLSON, University of West of Scotland, Hamilton, Scotland, United

Kingdom

The role of the members of the Programme Committee was to provide advice on

topics to include in the programme, speakers to invite and most importantly, to

evaluate the abstracts which were submitted in their area of expertise.

Short description of work

- Please shortly describe the work and activities of that committee


19

Communication with and between members of the Programme Committee were done

by e-mail.

After the abstract submission deadline (30 April 2014), submitted abstracts were

anonymised and sent for evaluation to members of the Programme Committee who

provided a score for each abstract (4. Highly recommended for inclusion as an oral

presentation, 3. Recommended for inclusion as an oral presentation, 2. Only

recommended for inclusion as a poster presentations, 1. Not recommended for

inclusion).

On the basis of the evaluation, abstracts with the highest average score were selected

for each topic. A draft programme with the highest scoring abstracts was put together

and circulated to members of the Programme Committee.

Problems and changes occurred

- Please describe which problems occurred in the work of this committee and how

they have been overcome.

- Please describe which changes occurred to this committee compared to the grant

agreement and out of which reason they occurred.

No problems occurred in the work of this committee. Decisions on successful abstracts

and inclusion of presenters were based on average scores obtained from the

evaluation of all members of the Programme Committee.

AE contacted all members of the Scientific Committee foreseen in the grant

application. Only Cees Hertogh was confronted with a particularly busy workload at

the time of the evaluation process and was therefore unable to attend. All other

experts took part in the evaluation process.


20

Conference implementation

Final Conference programme

- Please describe the final programme, as it has taken place

- Please describe changes to the original planning

- Why did changes occur?

On the whole, few changes were done to the initial programme which was submitted

at the same time as the project application.

The part of the programme that saw the most changes concerned the plenary sessions

and keynote speakers, as a number of suggested speakers were unable to attend on

the dates of the conference. However, in most cases it was possible to identify

speakers from the same institution than the original speaker or an alternative speaker

to address the same issue. None of the changes impacted the quality or content of the

conference, as it was possible to select replacement speakers with similar

backgrounds to present on the issues that had been initially selected.

With regard to parallel sessions, for all of the 16 foreseen session, it was possible to

choose relevant abstracts and to have between four and six speakers to present about

their research and projects in these fields. Due to the particularly high submission of

interesting and positively evaluated abstracts, it was possible to include additional

parallel sessions not originally foreseen (Assistive technologies, intellectual disability,

early-onset dementia, outreach programmes, training, sexuality and emotional well-

being, art and dementia, involving people with dementia II).

In order to accommodate these extra sessions, it was necessary to start the

conference programme at 8.30 rather than 9.00.

The detailed conference programme is included below.

Monday, 20 October 2014

09.00–12.00 (Barra): Alzheimer Europe Board Meeting

09.00–12.00 (Shuna/Staffa/Jura): INTERDEM Meeting

14.00–17.00 (Castle I and II): Alzheimer Europe Annual General Meeting

14.00–17.00 (Shuna/Staffa/Jura): INTERDEM Meeting

18.00-19.00 (Argyll Suite): Opening Ceremony

Opening ceremony

Heike von Lützau-Hohlbein, Chairperson, Alzheimer Europe

Henry Simmons, Chief Executive, Alzheimer Scotland

Representatives of the Scottish Dementia Working Group and the National

Dementia Carers Action Network

Keynote lecture:

Geoff Huggins (Scotland, UK): A rights based approach to developing and

implementing Scotland’s National Dementia Strategy


21

19.00–20.30: Welcome Reception

Tuesday, 21 October 2014

08.30–10.00 (Argyll I-III) Plenary Session PL1: Promoting a rights based

approach to dementia

Chairperson: Charles Scerri (Malta)

PL1.1. Colin McKay (Scotland, UK): Scotland’s national human rights plan and its

implications for people with dementia

PL1.2. Matthias Kloth (Council of Europe): The promotion of human rights of

older persons by the Council of Europe

PL1.3. Gráinne McGettrick (Ireland): The UN Disability Convention as an

instrument for people with dementia and their carers

PL1.4. Maja Groff (Netherlands): Rethinking the protection of vulnerable adults

in the light of the 2000 Hague Convention

10.00–10.30 Coffee break and poster exhibition PO1-PO50

PO1. Margaret Winbolt (Australia): Another string to my bow: MP3 technolopgy

supporting family carers of people with dementia

PO2. Zoe Elkins and Rory Maclachlan (England, UK): The challenges of delivering

person centred dementia care at a “nursing need” level in the patient’s home

PO3. Inger Molvik (Norway): GPS & dementia

PO5. Roxana Carare (England, UK): Active friends in the dementia friendly

Southampton, UK

PO6. Charles Scerri (Malta): Caring at home: Dementia training programme

evaluation for community caregivers in Malta

PO7. Pauline Cameron (Scotland, UK): Meeting dementia carer’s information

needs: Community based dementia information workshops for family carers

PO8. Tatjana Cvetko (Slovenia): One-day school about dementia – practical

approach to learning about caregiving

PO9. Beril Imamogullari (Italy): Impact of ICT-based design support for

managing the behavioural and psychological symptoms in terms of dignity and

autonomy in dementia: A systematic review

PO10. Jennifer Wenborn (England, UK): Developing the UK version of

Community Occupational Therapy in Dementia (COTiD-UK)

PO11 Juan Luis Muñoz-Sanchez (Spain): Care needs for people suffering from

Alzheimer's disease in Spain

PO12. Elisabeth Reitinger (Austria): Family care for people with dementia:

Empowerment and inclusion

PO13. Sandra Schaller (Germany): Individual needs of family caregivers in

dementia: The Erlanger dementia Registry (EDR)

PO14. Ida Wulff Jacobsen (Norway): Alma supervisors –health personnel with

specialised knowledge and skills

PO15. Jeni Bell (England, UK): A dementia friendly acute hospital: one year on


22

PO16. Sian Jones (England, UK): 12000 Trained in Dementia

PO17. Sandra Shields (Scotland, UK): “The Power of Two” - A multi-disciplinary

approach to appreciative inquiry facilitates transformational change in attitudes

to dementia care in acute hospital setting

PO18. Lynne Renals-O’Kane (England, UK): Hospital care

PO19. Karen Goudie (Scotland, UK): Improving delirium care in acute hospitals,

a national approach

PO20. Hana Vanková (Czech Republic): Palliative care in dementia: Czech

experience

PO21. Arlene Astell (England, UK): Adaptive interaction training to equip care

home staff

PO25. Jenny Henderson (Scotland, UK): Enhanced sensory day care for people in

the advanced stage of dementia – evaluation of a new model

PO28. Iva Holmerová (Czech Republic): Assisted self-assessment as a tool to

improve quality of long term care

PO30. Giovannio Carletti (France): Through an in depth understanding of the

nature of interaction in people living with dementia

PO31. Arlene Astell (England, UK): Crossing cultural divides in dementia care:

the UK-Bulgaria experience

PO33. Christophe Reintjens (France): Caregivers at risk: an environmental

perspective

PO34. Barbara Manni (Italy): The earthquake impact in people with dementia:

an experience of an Alzheimer’s special care unit

PO35. Anders Møller Jensen (Denmark): An evaluation of the DVD box set "Life

in the memories"

PO36. Silke Kammer (Germany): Music is the key – It is?

PO37. Feija Schaap (Netherlands): Dementia Care Mapping in the care for

elderly people with an intellectual disability and dementia – feasibility study

PO38. Andrea Fabbo (Italy): The Snoezelen approach during bath in an

Alzheimer care unit

PO39. Theo Hazelhof (Netherlands): “The Educating Nursing Staff Effectively

(TENSE) Study”: Study Design

PO40. Silvia Ragni (Italy): Sense of smell, touch, memory and emotions: an

opportunity for cognitive stimulation

PO42. Verena Christina Tatzer (Austria): Subjective experiences of activity and

participation of people with moderate to severe dementia in two long term-

setting – findings from a study inspired by ethnography”

PO43. Mary Marshall (Scotland, UK): Designing mental health units: designing a

place that heals

PO44. Ninoslav Mimica (Croatia): Psychiatric hospitals in Croatia and their role in

palliative care for people with Alzheimer's dementia

PO45. Elena Mariani (Italy): Shared decision making on a ‘life-and-care plan’ in

long-term care facilities: research protocol


23

PO46. Sandra Shields (Scotland, UK): Research into action: Therapeutic Gardens

can improve the quality of a persons stay in an acute hospital environment

PO47. Jenny Reid (Scotland, UK): Partnership working to support and embed the

Promoting Excellence Framework in occupational therapy education

PO48. Elena de Andrés-Jiménez (Spain): Home carer: Elderly caregiver for

elderly people with dementia

PO49. Lorraine Douglas (Scotland, UK): Self-efficacy in informal caregivers of

people with dementia

PO50. Carrie Milligan (Scotland, UK): Opportunities and challenges of working in

an assessment ward following dementia design guidelines: An occupational

therapist’s reflection

10.30–12.00 (Argyll I-III) Plenary Session PL2: Round table discussion on

dementia strategies and policies

Moderator: Henry Simmons (Scotland, UK) with an introduction by

Alex Neil, Cabinet Secretary for Health, Scottish Government

And the participation of

Geoff Huggins, Scottish Dementia Strategy (Scotland, UK)

Dorothée Knauf-Hübel, Ministry of Health (Luxembourg)

Benoit Lavallart, French Alzheimer’s Plan (France)

Jürgen Scheftlein, Directorate General for Health (European Commission)

Päivi Voutilainen, Ministry of Health and Social Welfare (Finland)

12.00–13.00 Lunch

13.00–14.00 (Shuna/Staffa) Special Symposium SS1: Snapshots of our lives

– European Working Group of People with Dementia

Chairperson: Helga Rohra (Germany)

SS1.1 Helga Rohra (Germany): Chairing the European Working Group of People

With Dementia

SS1.2 Agnes Houston (Scotland, UK): 8 years on, here I am

SS1.3 Jean-Pierre Frognet (Belgium): My expereience of day care in Belgium

SS1.4 Stig Atle Aavik (Norway): I do what I always do

13.30–15.30 (Orkney) INTERDEM Academy: Raising the standard: better

evaluations of psychosocial interventions in dementia care through improved

methodology (Invitation only)

IA1. Frans Verhey (Netherlands): Introduction to the INTERDEM Academy

IA2. Bob Woods (Wales, UK): Introduction to the session

IA3. Jill Manthorpe (England, UK): Qualitative methods in the evaluation of

psychosocial interventions

IA4. Myrra Vernooij-Dassen (Netherlands): Addressing the implementation

error in psychosocial dementia research


24

IA5. Bob Woods (Wales, UK): Randomised controlled trials – what place do

they have

14.00–15.30 (Castle I) Parallel Session P1: Rights and responsibilities of


Chairperson: Dianne Gove (Luxembourg)

P1.1. Fabrice Gzil (France): National surveys on the rights of people with

dementia in French nursing homes, long-term care units, home health care

services and community care services

P1.2. Valerie Carr (Scotland, UK): Exploring a technological framework to

support control and Conservation of Resources through cognitive decline

P1.4. Elvira Martín (Spain): Evolution of legal incapacity decisions for people

with dementia

P1.5. Margaret Crean (Ireland): Human rights

14.00–15.30 (Castle II) Parallel Session P2: Dementia strategies

Chairperson: Amy Dalrymple (Scotland, UK)

P2.1. Sophie Hodge and Emma Hailey (United Kingdom): Findings from the

English national memory clinics audit

P2.2. Marc Wortmann (United Kingdom): Global actions on dementia: Update

and the important country role

P2.3. Emer Begley (Ireland): Involving people with dementia in national policy

development: A case study of the Irish national dementia strategy

P2.4. Elaine Hunter (Scotland, UK): Writing policy, influencing practice:

Contribution of the allied health professionals

P2.5. Maria Moglan (Romania): One step forward in Romania: national

dementia strategy 2014-2020

14.00–15.30 (Argyll II) Parallel Session P3: Involving people with dementia

Chairperson: Helga Rohra (Germany)

P3.1. Maribel Pino (France): Involvement of persons with dementia and their

carers in the development of assistive technology solutions: the Living Lab

approach

P3.2. Gill Phillips and Ken Howard (England, UK): We can't cure you. We can't

cure you but... A story with two endings.

P3.3. Rachael Litherland (England, UK): Dementia engagement &

empowerment project – making involvement and influencing meaningful

P3.4. Matt Murray and Barbara Woodward (England, UK): Alzheimer’s Society’s

Research Network: 15 years of involving people affected by dementia in

research

P3.5. Members of the Scottish Dementia Working Group Research Sub-group

(Scotland, UK): Core principles for involving people with dementia in research

14.00–15.30 (Argyll III) Parallel Session P4: Home care


25

Chairperson: Teresa Fraser (Scotland, UK)

P4.1. Marion Villez (France): Caregiving for a better life at home with

Alzheimer’s disease

P4.2. Rose-Marie Dröes (Netherlands): MEETINGDEM; adaptive implementation

and validation of the Meeting Centers Support Programme for people with

dementia and their carers in Europe

P4.3. Marijke Van Haeften-Van Dijk (Netherlands): Transforming nursing home

based day care for people with dementia into socially integrated community

day care: an effect study

P4.4. Arlene Astell (United Kingdom): Supporting autonomy independence in

dementia: what is important?

P4.5. Jan Hamers (Netherlands): The use of physical restraints and involuntary

care at home

14.00–15.30 (Shuna/Staffa) Parallel Session P5: Assistive technologies

Chairperson: Heike von Lützau-Hohlbein (Germany)

P5.1. Louise Hopper (Ireland): Dementia Ambient Care: Multi-sensor support to

enable independent home-based living for people with dementia

P5.2. Areti Efthymiou (Greece): ICT solutions for informal carers across

Europe: A new European web platform

P5.3. Tone Øderud (Norway): “The GPS meant a new life for us – we will never

give it back!”

P5.4. Mandy Salomon (Australia): “I’m doing it”: How people experiencing

moderate to advanced dementia respond to an interactive graphical 3D world

designed specifically for them.

P5.5. Philipp Koldrack (Germany): Situation-aware navigation assistance:

beyond the Map App

P5.6. Torhild Holthe (Norway): Assistive technology as an early intervention for

younger people with dementia and their family carers: Benefits and challenges

14.00–15.30 (Jura/Barra) Parallel Session P6: Training

Chairperson: Jan Beattie (Scotland, UK)

P6.1. Jenny Mackenzie (United Kingdom): “From Newsnight to Downton” –

Improving participants’ learning, recall and retention in training outcomes

through instructional design embracing story-telling techniques

P6.2. Dawn Brooker (United Kingdom): FITS into practice: The role of the

dementia practice Development Coach and the Dementia Care Coach

P6.3. Ralf Schattschneider (Germany): Basic qualification for coping with

dementia – a training offer for companies and institutions in the service sector

P6.4. Sarah Reed (United Kingdom): REAL Communication workshops

P6.5. Margaret Brown (Scotland, UK): Preparing the Nurses of the Future

14.00–15.30 (Argyll I) Alzheimer Scotland Session AS1: Transformation of

the health and social care journey


26

Chairperson: Helen Hay (Scotland, UK)

AS1.1. Henry Simmons (Scotland, UK): The importance of systemic change

AS1.2. Kate Fearnley (Scotland, UK): Post diagnostic support: the 5 Pillar

model of good practice

AS1.3. Jim Pearson (Scotland, UK): Five pillars to eight pillars: connecting the

models, creating a continuum

AS1.4. Lindsay Kinnaird (Scotland, UK): Principles and development of the

eight pillars model, and next steps


PO51. Lyn Irvine-Brinklow (Scotland, UK): Dementia champions and best

practice in dementia care

PO52. Anders Møller Jensen (Denmark): Patients with dementia admitted to

somatic hospital wards – a focus on dementia care and the use of psychosocial

methods in the caring for patients with dementia

PO53. Helen Skinner (Scotland, UK): Use of activity boxes in the acute care

setting

PO54. Mei Lin Sharifah Rose Amie Ee (Singapore): The effectiveness of various

dementia therapies in a multicultural society

PO55. Liz Sampson (England, UK): UCL partners dementia training initiative:

Improving the care of people with dementia in general hospitals

PO56. Elizabeth Taylor (Scotland, UK): Redesigning an occupational therapy

service to promote a culture of engagement in activity within an NHS Nursing

Home

PO57. Rebecca Kellett (Scotland, UK): Does training with the Communication

and Mealtimes Toolkit improve the quality of care at mealtimes for people with

dementia?

PO58. Laura Guidi (Italy): “Giovani nel Tempo”: A project to stimulate memory

functions in the elderly

PO60. Liane Schirra-Weirich (Germany): DementiaNet CityRegion Aachen:

Outcomes of the scientific evaluation

PO61. Verena Christina Tatzer (Austria): Every day experiences, needs and

innovative ideas of caregivers of people with dementia – findings from a

participatory research project with community pharmacies

PO62. Zoe Harris (England, UK): Bridging the gap between care plan and carer

PO63. Paraskevi Sakka (Greece): Development of a comprehensive outpatient

memory clinic meeting patient and family needs in Athens: The Athens

Association of Alzheimer’s disease and Related Disorders (AAADRD)

PO65. Marijke Span (Netherlands): The meaning of a supportive IT application

facilitating shared decision making in dementia

PO66. Bridget Johnston (England, UK): Living well with dementia: Enhancing

dignity and quality of life, using a novel intervention, dignity therapy

PO67. Johannes Gräske (Germany): Quality of life in dementia care – Differences

in self- and family-ratings

PO68. Helga Fabianits (Austria): “Enjoy your meal!” – How to reach more

autonomy and quality of life in the ability to eat through occupational therapy


27

PO70. Catherine Hennessy (England, UK): The development of dementia-friendly

communities within the rural ageing context of South West England

PO71. Ann Pascoe (Scotland, UK): How an international sporting event was used

to enhance a remote rural Scottish dementia friendly community

PO72. Ann Pascoe (Scotland, UK): How technology was used to connect arts and

health therapeutic interventions to remote rural communities

PO73. Ingo Kilimann (Germany): Short-term caregiver psychotherapy

PO74. Rosalie van Knippenberg (Netherlands): Deal-iD Study: Dealing with daily

challenges in Dementia - A feasibility study of the Experience Sampling

Methodology in spousal caregivers of dementia patients

PO75. Joany Millenaar (Netherlands): The impact of young onset dementia on

caregivers compared to late onset dementia: Results from the NeedYD study

PO76. Laura Maio (England, UK): Family carers’ experiences of Admiral nursing

PO77. Rabih Chattat (Italy): Unspecialised carers and family caregivers: factors

influencing distress

PO78. Lizzy Boots (Netherlands): Development and feasibility of an Internet-

based self-management intervention for spousal caregivers of people with early-

stage dementia

PO79. Alieska Dam (Netherlands): The effectiveness of social support

interventions for caregivers of persons with dementia

PO80. Gillian Davies (Scotland, UK): Being mindful of the carers

PO81. Jenny Reid (Scotland, UK): Bridging the gap: bringing evidence into AHP

Practice for people living with dementia

PO82. Gabriela Stoppe (Switzerland): Guideline adherence in outpatient care of

memory disorders: A survey of Swiss physicians

PO83. Reinhard Guss (England, UK): Influencing the professionals – A UK wide

project of dementia service user involvement in professional practice guidance

PO84. Clarissa Giebel (England, UK): Relating cognition to activities of daily

living in mild dementia: Establishing a basis for future interventions

PO85. Rónán O’Caoimh (Ireland): The Quick Memory Check (QMC):

Development and validation of a “Home” caregiver administered cognitive screen

PO86. Jenny Mackenzie (England, UK): “Educating for excellence”: Determining

the values, skills and knowledge framework behind `excellent’ dementia care

PO88. Mary Hattie (Scotland, UK): MWC report on dementia care in NHS

continuing care units

PO89. Agnes Monaghan (Scotland, UK): Improving the quality of care of elderly

patients in acute medicine by using an innovative dementia delirium care bundle

six (DD 6): an experience from a district general hospital in Scotland

PO90. Jochen René Thyrian (Germany): Does an interdisciplinary network

improve dementia care? Results from the IDemUck-study

PO91. Karin Wolf-Ostermann (Germany): Multiprofessional care and support for

people with dementia in the community – First results of the DEMNET-D-study

PO92. Els Derksen (Netherlands): Day care activities for people with dementia

important for staying to live at home


28

PO93. Colin MacDonald (Scotland, UK): The Edinburgh Behaviour Support

Service (EBSS)

PO94. Nicola Cooper (Scotland, UK): “Happiness, volunteering and dementia” - 5

forget me not stories

PO96. Julie Christie (Scotland, UK): PRESENT: Co-production with people

affected by dementia in East Dunbartonshire

PO98. Julie Christie (Scotland, UK): Resilience, dementia and social work

practice

PO100. Caroline Ryder-Jones (England, UK): Myth-busting through partnership

working in reablement for people with dementia

16.00–17.30 (Castle I) Parallel Session P7: Proxy decision-making

Chairperson: Federico Palermiti (Monaco)

P7.1. Rajdeep Routh (Scotland, UK): How useful is it to have a power of

attorney in Scotland?

P7.2. Jill Carson (Scotland, UK): The power is in your hands: Promoting power

of attorney in Scotland

P7.3. Patricia McParland (Ireland): Public responses to risk, safety and decision

making in the context of dementia

P7.4. Toby Williamson (United Kingdom): Best interests decision making for

people living with dementia – best interests for whom?

P7.5. Eleanor Edmond (Ireland): Support or substitution – the implications of

the UNCRPD for decision making in dementia.

16.00–17.30 (Castle II) Parallel Session P8: Post diagnostic support

Chairperson: Jean Armitage (Scotland, UK)

P8.1. Sandra Schaller (Germany): Empowerment of informal caregivers in

dementia: individualised & web-based post-diagnostic support

P8.2. Karim Saad (England, UK): Reducing inappropriate use of antipsychotics

in dementia - The ALzheimer COoperative Valuation in Europe (ALCOVE)

Toolbox

P8.3. Pauline Banks (Scotland, UK): Dementia in the workplace: the potential

for continued employment post diagnosis.

P8.4. Anna Dowrick (England, UK): Improving access to post diagnosis support

for people with dementia

P8.5. Hannele Moisio and Lotta Olofsson (Sweden): Family concept to support

the entire family in early stages of dementia

16.00–17.30 (Argyll II) Parallel Session P9: Peer support groups

Chairperson: Paraskevi Sakka (Greece)

P9.1. May-Hilde Garden (Norway): Training programme for peer support

workers

P9.2. Štefanija Lukiz Zlobec (Slovenia): How Alzheimer Cafe became successful

in Slovenia


29

P9.3. Nan Greenwood (England, UK): Peer support for carers: the experiences

of carers and peer volunteers

P9.4. Charlotte Clarke (England, UK): The role and impact of peer support by

and for people with dementia and their carers in implementing the national

dementia strategy for England (DH 2009)

P9.5. Rebecca Poz (England, UK): Delivering compassion focused therapy to

couples experiencing a diagnosis of dementia in a group setting: is it feasible?

16.00–17.30 (Argyll III) Parallel Session P10: Residential care

Chairperson: Fiona Robert (Scotland, UK)

P10.1. Hanneke Beerens (Netherlands): Factors associated with change in

quality of life of people with dementia recently admitted to long-term care

facilities

P10.2. Margareta Halek (Germany): Dementia Care Mapping: the challenge of

improving daily practice in nursing homes – results of a quasi-experimental

trial

P10.3. Nele Spruytte (Belgium): Frameworks of care for persons with dementia

and their relationship with the material environment of nursing homes

P10.4. Susanne Rishøj (Denmark): Reminiscence dancing in nursing homes in

Denmark

P10.5. Hilde Verbeek (Netherlands): Green care farm for people with dementia

as an alternative to traditional nursing home care

16.00–17.30 (Shuna/Staffa) Parallel Session P11: Dementia and intellectual

disability

Chairperson: Monika Natlacen (Austria)

P11.1. Karen Watchman (Scotland, UK): Post-diagnostic support for people

with an intellectual disability and dementia

P11.2. Alison Spencer and Karolina Walewska (England, UK): Making memory

assessment services accessible to individuals with learning disabilities

P11.3. Matthew P. Janicki (USA): An update on a dementia services advocacy

effort for adults with intellectual disability using a national task group approach

P11.4. Emma Killick (England, UK): Meeting the challenge of dementia amongst

an ageing learning disability population – a providers story

P11.5. Päivi Jääskeläinen (Finland): Improving health care personnel´s

professional skills in examining and treating elderly persons with intellectual

disability and memory disorders

16.00–17.30 (Jura/Barra) Parallel Session P12: Sexuality and emotional

well-being

Chairperson: Barbara Sharp (Scotland, UK)

P12.1. Rakel Berenbaum (Israel): The right to mourn - Grieving of people with

dementia?

P12.2. Eine Korhonen (Finland): Sexual well-being in progressive memory

disorders project 2012- 2014


30

P12.3. Jane Youell (England, UK): Double beds and nice warm bodies –

sexuality and dementia

P12.4. Helen Irwin (England, UK): Exploring the shared experience of humour

in people living with dementia and their partners

P12.5. Kirsty Patterson (England, UK): Positive experiences whilst living with

dementia: A qualitative exploration of growth in older adults

16.00–17.30 (Argyll I) Alzheimer Scotland Session AS2: Making dementia

everyone’s Business

Chairperson: Maxine Dinnes (Scotland, UK)

AS2.1. Ann Pascoe (Scotland, UK): Carer support: why it is needed and what it

should look like

AS2.2. Elaine Hunter (Scotland, UK): Allied health professionals’ role in

supporting people with dementia

AS2.3. Arlene Crockett and Sandra Shafii (Scotland, UK): The importance of

fementia friendly communities

AS2.4. Janice McAlistair and Gladys Haining (Scotland, UK): Transforming

acute care: the role of the Alzheimer Scotland

AS2.5. Rebecca Kellett (Scotland, UK): Improving dementia awareness in care

settings: being a Dementia Champion

16.00–17.30 (Orkney) INTERDEM Academy: Raising the standard: better

evaluations of psychosocial interventions in dementia care through improved

methodology (Invitation only)

IA6. Esme Moniz-Cook (England, UK): Selecting and developing measures

IA7. Martin Orrell (England, UK): Selecting control groups

IA8. Panel Discussion

Wednesday, 22 October 2014

08.30–10.00 (Castle I) Parallel Session P13: Consent and advance directives

Chairperson: Eleanor Edmond (Ireland)

P13.1. Henna Nikumaa (Finland): Later life legal planning is still unfamiliar

P13.2. Leontine Groen-Van De Ven (Netherlands): To anticipate or not to

anticipate future decisions for people with dementia

P13.3. Daniel Bianchi (Malta/United Kingdom): Dementia and participation in

clinical decision-making by using an advance directive.

P13.4. Maria do Rosário Zincke dos Reis (Portugal): Consent - advance

directives - research

P13.5.Chantal Van Audenhove (Belgium): “We DECide”: Advance care planning

for nursing home residents with dementia

P13.6. Natalie Rigaux (Belgium): Thinking earlier…about later. Advance care

planning for persons with dementia


31

08.30-10.00 (Castle II) Parallel Session P14: Socio economic cost of

dementia

Chairperson: Kate Fearnley (Scotland, UK)

P14.1. Gavin Terry (England, UK): Socio-economic costs of dementia to

business and employers

P14.2. Caterina Musella (Italy): Alzheimer's disease: costs of care and the

needs of families in the Campania region

P14.3. Marie-Odile Desana (France): 2014: Alzheimer’s disease and related

diseases at the heart of French public policies

P14.4. Shibley Rahman (England, UK): Would future NHS dementia care easily

lend itself to private markets?

P14.5. Angela Brewin (England, UK): Use of amyloid positron emission

tomography (pet) in the diagnosis of Alzheimer’s disease (AD) in the United

States (US) – a budget impact analysis

08.30-10.00 (Argyll II) Parallel Session P15: Dementia-friendly communities

Chairperson: Karishma Chandaria (England, UK)

P15.1. Richard Ward (Scotland, UK): Memory friendly neighbourhoods:

Highlights from a programme of knowledge exchange

P15.2. Petra Plunger (Austria): Perspectives of community pharmacy staff on

caring for people living with dementia and their caregivers – findings from a

participatory research project with community pharmacies in Austria

P15.3. Anita Pohjanvuori (Finland): Third sector values in Memory Programme

implementation in Finland

P15.4. Sabine Henry-Gössing (Belgium); Dementia-friendly cities and police: a

new collaboration

P15.5. Heather Lundy (Northern Ireland, UK): Can dementia friendly

communities improve the quality of life for people with dementia enabling them

to remain living within their own community?

08.30-10.00 (Argyll III) Parallel Session P16: People with dementia in

hospitals

Chairperson: Anne Buchanan (Scotland, UK)

P16.1. Shirley Law (Scotland, UK): Changing the culture of dementia care in

hospitals: An evaluation of the best practice in dementia care learning

programme designed for healthcare staff working in hospitals

P16.2. Francesca Neviani (Italy): The geriatric day service for behavioural and

psychological symptoms in dementia: a model of integration between hospital

and primary care in management of dementia

P16.3. Andrea Fabbo (Italy): A special hospital unit (shu) for management of

neuropsychiatric symptoms in people with dementia

P16.4. Wolfgang Hasemann (Switzerland): Effects of the interdisciplinary basel

delirium and dementia prevention and management program demdel


32

P16.5. Scott Hamilton (Scotland, UK): Promoting excellence: Meeting the

learning and development needs of acute staff and advocating quality care

provision for people with dementia

P16.6. Anna Waugh (Scotland, UK): Achieving better services for people with

dementia and carers in acute hospital and community settings - Scotlands

national dementia champions programme: Three years on

08.30-10.00 (Shuna/Staffa) Parallel Session P17: Early-onset dementia

Chairperson: Marco Blom (Netherlands)

P17.1. Aud Johannessen (Norway): A shifting sense of being: A secondary

analysis and comparison of two qualitative studies on young-onset dementia

P17.2. Jackie Tuppen and Julia Burton (England, UK): Cogs Clubs – A popular

model of support in early dementia

P17.3. Jacqueline Parkes (England, UK): The Forget-me-nots: Developing a

social group for people with young onset dementia and their carers

P17.4. Diana Schack Thoft (Denmark): An insight into the Lifeworlds of people

with early dementia-development of a qualitative participatory research model

P17.5. Deliane Van Vliet (Netherlands): Retaining a sense of usefulness in

Young Onset dementia: A qualitative study

P17.6. Rikki Lorenti and Jacqui Hussey (England, UK): Younger people with

dementia: A new service model

08.30-10.00 (Jura/Barra) Parallel Session P18: Art and dementia

Chairperson: Chris Lynch (Scotland, UK)

P18.1. Heather Edwards (England, UK): Music Mirrors – self-help in early

dementia

P18.2.Franka Meiland (Netherlands): Evaluation of the national implementation

of the Alzheimer art programme in Dutch museums

P18.3. Claire Garabedian (Scotland, UK): Music and dementia: An embodied

space

P18.4. Sandra Oppikofer (Switzerland): “Awakened Art Stories” – rediscovering

art with dementia – final results from the pilot study

P18.5. Beth Luxmoore (England, UK): Creative activities in the community

improve well-being for people affected by dementia

08.30-10.00 (Argyll I) Alzheimer Scotland Session AS3: Creating a rights-

based National Dementia Strategy, delivering it in partnership

Chairperson: Sarah Burgess (Scotland, UK)

AS3.1. Jim Pearson (Scotland, UK): Background to the Scottish dementia

strategy: the Charter of Rights

AS3.2. Geoff Huggins (Scotland, UK): Why have a Dementia Strategy: what it

does

AS3.3. Hugh Masters (Scotland, UK): Acute care and the 10 point action plan


33

AS3.4. Susanne Forrest (Scotland, UK): Successful partnership working:

creating and delivering the Promoting Excellence Framework


PO101. Adrienne Vince (England, UK): An exploration into psychiatrists’

understanding of what it means to live well with dementia, and experiences of

engaging in discussions about positive wellbeing when sharing a diagnosis

PO102. Mojca Stopar (Slovenia): Public knowledge of dementia-friendly city in

Slovenia – a pilot study

PO103. Ursula Kienberger (Austria): “Mission Dementia”: A dementia education

programme for police officers

PO104. Toby Williamson (England, UK): Dementia friendly communities and

positive risk taking

PO105. Alessandro Biamonti (Italy): New environments for Alzheimer’s

community

PO106. Anna Brorsson (Sweden): Characteristics of the space of a grocery shop

in relation to people with Alzheimer’s disease

PO107. Saul Mason and Loraine Butterworth (England, UK): Falmouth: A beacon

for a dementia friendly community

PO108. Maria A. Hoppe (Asutria): Return to an unknown beginning - living with

Alzheimer’s patients

PO109. Irene Mackay (Scotland, UK): Campaign to raise dementia awareness in

primary schools

PO110. Arlene Astell (England, UK): In-Touch: Making the most of touch tablets

for people with dementia

PO111. Anne-Ragnhild Moseby (Norway): Hillveig`s Safety box

PO112. Arlene Astell (England, UK): Enabling a good life with dementia through

everyday technology

PO113. Matt Murray (England, UK): Utilising personal experiences of dementia to

improve the quality and quantity of dementia research funded in the UK

PO114. Pam Schweitzer (England, UK): Spreading the word: multiplication of

best practice in carer support through a new apprentice scheme in reminiscence

arts in dementia care

PO115. Jane Burns (Scotland, UK): “A picture is worth a thousand words

(Frederick R. Barnard, 1921) - involving the person with dementia in art therapy

PO116. Pilar Cañabate (Spain): Support groups for couples of people with early

onset dementia

PO117. Toby Williamson (England, UK): Doing it for ourselves. Self help groups

for people living with dementia

PO118. Stephanie Leemans (Belgium): Reminiscence group for people with

dementia and family carers

PO119. Patrizia Bruno (Italy): Caregivers Training as presupposed condition to

the care of people affected by dementia

PO120. Maaret Meriläinen (Finland): Memories to Music - participatory group

method for people with dementia


34

PO121. Nathalie Rigaux (Belgium): In town with people with dementia: a moral

and political experience

PO124. Shibley Rahman (England, UK): Who were the biggest winners and

losers of the G8 Dementia Summit? An online survey

PO126. Silvia Maria Gramegna (Italy): Towards an extra-ordinary sensitivity of

people with dementia due to Alzheimer’s Disease (AD): a design point of view

PO128. Mei Lin Sharifah Rose Amie Ee (Singapore): Developing dementia

services to help people age-in place

PO130. Raymond Smith (England, UK): The impact of volunteer mentoring on

carers of people with dementia

PO131. Chantal van Audenhove (Belgium): Supporting family caregivers of

persons with dementia: a pilot-study on the impact of a psycho-educational

programme

PO132. Mei Lin Sharifah Rose Amie Ee (Singapore): Dementia-friendly

community – Singapore’s vision

PO133. Karishma Chandaria (England, UK): Putting people at the centre –

dementia friendly communities in England

PO134. Ben Bano (England, UK): Promoting autonomy and dignity –

Understanding and meeting the spiritual needs of people with dementia

PO135. Michael Hagedorn (Germany): KONFETTI-Cafés – a step forward in

creating community-based meeting spaces for people with and without dementia

PO136. Eva Lindqvist (Sweden): What everyday activities do people with mild

cognitive impairment or early dementia want to maintain mastery of - and why?

PO137. Leontine Groen-van de Ven (Netherlands): Preferences, emotions and

actions. People with dementia influencing decision-making about day-care

PO141. Flavio Paoletti (Italy): New cognitive stimulation approaches based on

foreign language teaching for people suffering from mild dementia on a primary

and mixed neurodegenerative basis: a pilot study

PO143. Jennifer Wenborn (England, UK): Community Occupational Therapy in

Dementia (COTiD-UK): a pilot trial

PO144. Anna Dowrick (England, UK): Is quality of life for people with dementia

in the UK improving?

PO145. Gavin Terry (England, UK): Barriers to autonomy and dignity – how the

lack of widespread effective integrated care limits how people live with dementia

PO147. Ruth Bartlett (England, UK): Post-diagnostic opportunities, as well as

support: why the policy emphasis needs to shift to promote the citizenship of


PO148. Sanna Aavaluoma (Finland): Psychotherapy in dementia care

PO149. Rónán O’Caoimh (Ireland): Use of a “Memory Gym” Intervention as a

post-diagnostic support in the management of cognitive ompairment

10.30-12.00 (Castle I) Parallel Session P19: Ethics

Chairperson: Iva Holmerová (Czech Republic)


35

P19.1. Peter Kevern (England, UK): “Truth is rarely pure and never simple” –

on the ethics of lying to people with dementia

P19.2. Marie Poole (England, UK): Going home? A study of capacity and best

interests in people with dementia being discharged from hospital

P19.3. Tracey Rehling (England, UK): Engaging people with dementia in

research – best practice and person centred approaches considered in

accordance with the demands for ethical scrutiny.

P19.4. Roberta Caiazza (England, UK): Should we tell lies to people with

dementia in their best interests? The views of Italian and UK clinicians.

P19.5. Louisa Jackman (England, UK): Moral and legal issues of forced care

P19.6. Julian C Hughes (England, UK): Ethical dilemmas: a daily challenge

10.30-12.00 (Castle II) Parallel Session P20: Prevention

Chairperson: Maureen Thom (Scotland, UK)

P20.1. Knud D. Andersen (Denmark): How leaders can support implementation

of new knowledge about preventing agressive behaviour

P20.2. Susan Browne (Scotland, UK): Innovative midlife intervention for

dementia deterrence (In-MINDD): a feasibility randomised controlled trial

P20.3. Michael Splaine (USA): Messaging about dementia risk and prevention:

It’s complicated but necessary

P20.4. Maria Pierce (Ireland): Primary prevention of dementia: Potential for

alignment with health promotion policy

P20.5. Maarit Salonen (Finland): Brain orientation in Finland

10.30-12.00 (Argyll II) Parallel Session P21: Perceptions and image of

dementia

Chairperson: Birgitta Martensson (Switzerland)

P21.1. Nancy McAdam (Scotland, UK): Nancy– A purposeful life with dementia

P21.2. Philly Hare (England, UK): Time bombs and tsunamis: the impact of

negative language and images on people with dementia

P21.3. Dianne Gove (Luxembourg): Ethical issues linked to the way that

dementia and people with dementia are perceived and portrayed

P21.4. Pilar Cañabete (Spain): Perception of dementia in 5882 families

evaluated in Fundació ACE

P21.5. Erika Moisl (England, UK): Talking about dementia: the views of people

affected

P21.6. Neva Železnik (Slovenia): Dementia and the media

10.30-12.00 (Argyll III) Parallel Session P22: Palliative care

Chairperson: Jan Johnston (Scotland, UK)

P22.1. Fiona Kelly (England, UK): What aspects of the physical environment

are important to people with dementia nearing the end of life? A consultation to

inform current design principles.


36

P22.2. Beth Britton (England, UK): End-of-life care: A very personal story

P22.3. Marie Lynch (Ireland): Changing Minds: Promoting excellence in end of

life care for people living with dementia

P22.4. Leena Reddy (England, UK): A beautiful death

P22.5. Mary Schulz (Canada): Dementia and staff grief

10.30-12.00 (Shuna/Staffa) Parallel Session P23: Outreach programmes

Chairperson: Tina Leonard (Ireland)

P23.1. Arlene Crockett (Scotland, UK): Dementia – Everyone’s Business!

Working with our black minority ethnic communities and faith communities

P23.2. Samuel R. Nyman and Simon Evans (England, UK): The social care and

support needs of adults with concurrent dementia and sight loss

P23.3. Justine McGovern (USA): Dignity: dementia and LGBT older adults

P23.4. Karan Jutlla (England, UK): Working with migrant communities:

achieving culturally competency in dementia care

P23.5. Michael White (Scotland, UK): The value of football memories in

reminiscence therapy

10.30-12.00 (Jura/Barra) Parallel Session P24: Involving people with

dementia II

Chairperson: Joyce Gray (Scotland, UK)

P24.1. Christopher Russell (England, UK): Experts by experience tutors –

People with dementia contributing directly to the academic experience of

students

P24.2. Sophie Razzel, Keith Oliver and Reinhard Guss (England, UK): “The

Forget-Me-Nots: A collaborative service-user involvement network”?

P24.3. Alexandra Bone and Keith Oliver (England, UK): Life Writing Project

P24.4. Kate Allan (Scotland, UK): “I don’t want to stop because I’m thriving”:

Optimal experience in persons with dementia

P24.5. Marijke Span (Netherlands): Participation of people with dementia in

developing IT applications: peril or pearl?

10.30-12.00 (Argyll I) Alzheimer Scotland Session AS4: The success and

impact of the Scottish Dementia Working Group

Chairperson: Jim Pearson (Scotland, UK)

AS4.1. SDWG members (Scotland, UK): History of the Scottish Dementia

Working Group

AS4.2. David Berry (Scotland, UK): Scottish Dementia Working Group input into

the National Dementia Strategy

AS4.3. Patricia Howie (Scotland, UK): Scottish Dementia Working Group

contribution to creating and delivering the Promoting Excellence Framework

AS4.4. SDWG members (Scotland, UK) Hopes for the future

12.00–13.00 Lunch


37

13.00–14.00 (Shuna/Staffa) Special Symposium SS2: Clinical trials in

Alzheimer’s disease

SS2.1 Mike Hutton (England, UK): Bringing new medicines to people with

Alzheimer’s disease: the current research framework and overview of ongoing

clinical trials

SS3.2 Ana Diaz (Luxembourg): Accessing information on clinical trials: existing

databases and Alzheimer Europe’s clinical trial project

SS3.3 Robert Kroes (Netherlands): Trials4me: Lilly’s initiative to improve

information on clinical trials

This symposium is supported by Lilly

13.00–14.00 (Jura/Barra) Special Symposium SS3: Nutrition and cognitive

function

Chairperson: Iva Holmerova (Czech Republic)

SS3.1 Neville Vassallo (Malta): The role of nutrition in Alzheimer’s Disease risk

reduction

SS3.2 Arfan Ikram (Netherlands): Coffee and Alzheimer’s Disease – the

epidemiological evidence

SS3.3 Astrid Nehlig (France): Coffee and Alzheimer’s Disease – the underlying

mechanisms

This symposium is supported by the Institute for Scientific Information on Coffee

14.00–15.30 (Argyll I-III): Plenary Session PL3: Involving people with

dementia

Chairperson: Daphne Wallace (England, UK)

PL3.1. Helga Rohra (Germany): People with dementia as advocates for change

PL3.2. Amy Dalrymple (Scotland, UK): Developing an integrated health and

social care model of support for people with dementia

PL3.3. Marie-Jo Guisset (France): Living well with dementia in the community:

new approaches, new projects identified by the European Foundations Initiative

on Dementia

PL3.4. Myrra Vernooij-Dassen (Netherlands): Dignity and the role of stigma in

dementia


PO152. Hilda Hayo (England, UK): Living with behavioural variant frontotemporal

dementia

PO153. Areti Efthymiou (Greece): Profile of Cognitive Complaints of Older Adults

visiting an outpatient Memory Clinic for the first time

PO154. Rosalam Che Me (Italy): A review on the needs to provide supportive

environment to encourage an active lifestyle among elderly in reducing the risks

against the onset of Alzheimer’s disease (AD)

PO155. Anna Damulina (Russia): Vascular cognitive impairment. A comparative

neuropsychological and VBM study


38

PO156. Susan Ross (Scotland, UK): Sustainably implementing national training

to meet local needs

PO157. Johannes Gräske (Germany): Participating in dementia care research

projects – Analysis of motivation of people with dementia and health care

providers

PO158. Chantale Buerli (Switzerland): National dementia strategy 2014-2017

PO160. Emma Coutts (Scotland, UK): The home based memory rehabilitation

programme, a pilot study for occupational therapy early intervention in dementia

PO161. Gillian McMillan (Scotland, UK): Eating well with dementia – A carers’

guide

PO162. Hana Vanková (Czech Republic): Common pathogenetic factors of

Alzheimer disease and type 2 diabetes Mellitus

PO163. Lisa McGarrigle (Ireland): Investigating the construct validity of a model

of cognitive reserve based on protective factors in dementia

PO164. Sofia Pavarini (Brazil): Cognition and frailty in Brazilian elderly in rural

communities

PO165. Sofia Pavarini (Brazil): Factors associated with caregivers physical

vulnerability

PO166. Sofia Pavarini (Brazil): Relation between cognition, quality of life (QOL)

and time of elderly who attend education programmes

PO167. Shibley Rahman (England, UK): An analysis of 75 English language

online articles on the G8 Dementia Summit

PO168. Mercé Boada (Spain): Fundació ACE, US national Alzheimer plan: an

engagement to fit patients and family needs

PO169. Lynda Forrest (Scotland, UK): Getting the dementia strategy to rural

grass roots in the Scottish Highlands

PO170. Gill Gowran (Scotland, UK): Supported self memory management

programme

PO171. Toby Williamson (England, UK): Dementia – what is truth? Exploring the

real experience of people living with more severe dementia

PO173. David Mason (Scotland, UK): How people with dementia achieved their

dream to roam freely in remote, rural Highlands

PO174. Anna Mäki-Petäjä-Leinonen (Finland): Counselling and later life legal

planning for persons with dementia

PO175. Mei Lin Sharifah Rose Amie Ee (Singapore): Ethical concerns in

institutionalised care settings

PO178. Clare Cutler (England, UK): Dementia friendly communties: Dorset

PO180. Zoe Elkins (England, UK): Communication between people with dementia

and there care-givers: Finding a common language

PO182. Debby Gerritsen (Netherlands): Nature as an intervention in dementia:

design of a qualitative pilot study

PO183. Jan Goddaer (Belgium): “Go back in the time”. A reminiscence

promenade in Aalbeke (Flanders, Belgium)


39

PO184. Marteen Milders (Scotland, UK): Developing a cost-effective psychosocial

program of training and support for people with dementia and their family

caregivers

PO186. Mandy Cook (Scotland, UK): Forests as places of mental wellbeing: the

meaning and use of urban forests by people with early-stage dementia

PO188. Annette Beyer (Germany): Strengthening the autonomy of people with

dementia via a community-based approach on a low threshold

PO189. Maud Graff (Netherlands): Development, implementation and evaluation

of a social fitness programme to improve social participation

PO190. Marie Lynch (Ireland): The palliative care needs of people with young

onset dementia: A literature review

PO191. Saadia Aziz Dhedhi (England, UK): GP perceptions on timely diagnosis

PO192. Frances Bunn (England, UK): Improving physical health of people with

dementia

PO193. Amanda McCarren (Scotland, UK): “Your Choice, Our Change”:

Delivering self directed support in the community

PO194. Caroline Sutcliffe (England, UK): Dementia care in England: perspectives

from inter-professional staff groups

PO195. Caterina Musella (Italy): Multi-method evaluation of “Home Care

Premium AIMA…Amiamoci” a home care project aimed at people with Alzheimer

and their caregivers

PO196. Susanne Schäfer-Walkmann (Germany): Local dementia care networks

in Germany – Types and governance structures

PO197. Alison Dawson (Scotland, UK): Best practice in the design of homes and

living spaces for people with dementia and sight loss: creating evidence-based

resources

PO198. Caterina Musella (Italy): The “AIMA…AMIAMOCI” model as part of a

process of humanisation and continuity of care

16.00–17.15 (Argyll I-III): Plenary Session PL4: Innovation and care

Chairperson: Henry Simmons (Scotland, UK)

PL4.1. Debbie Tolson (Scotland, UK) Practice innovation and policy development

PL4.2. Dianne Gove (Luxembourg): Improving continence care for people with

dementia living at home

PL4.3. Hugh Masters (Scotland, UK): Improving care in acute hospitals

PL4.4. Kai Saks (Estonia): Patterns of transition from home care towards

institutional dementia care: Findings of the RightTimePlaceCare

17.15–17.30 (Argyll I-III): Closing Ceremony

Presentation and invitation to 25th Alzheimer Europe Conference in Ljubljana, Slovenia

Closing comments and farewell by:

Henry Simmons, Chief Executive, Alzheimer Scotland

Iva Holmerová, Vice-Chairperson, Alzheimer Europe


40

Organisation and planning

- Which activities have been carried out?

- Which problems occurred and how did you solve them?

The following activities were carried out as part of the organisation and planning of the

24th Alzheimer Europe conference in Glasgow, Scotland, UK.

January 2014: Development of conference website including call for abstracts,

presentation of conference sponsorship opportunities to potential sponsors,

circulation of first conference announcement, publication of call for abstracts

February 2014: Field visit to conference venue and hotel, assessment of

technical needs, call for quotes for gala dinner, conference audiovisual

equipment and conference material, invitation of keynote speakers, Update on

conference planning, finances and programme to AE Board

March 2014: Decision on gala dinner and conference material, agreements with

vendors and suppliers, reminders sent out about conference call for abstracts,

invitations sent out to programme committee members

April 2014: Final reminder about abstract submission deadline, inclusion and

anonymisation of all abstracts into document to be evaluated by programme

committee

May 2014: Evaluation of abstracts by programme committee, Updating of

website with information on keynote speakers, keynote abstracts and CVs of

keynote speakers, contacts with company for development of mibile app for

conference delegates

June 2014: Development of programme based on evaluation by programme

committee, Information to abstract submitters on acceptance of presentation

and/or posters, reminder about approaching early bird registration deadline,

registration of delegates and sending out of confirmations and invoices, Update

of website with detailed conference programme, Update on conference planning,

finances and programme to AE Board

July 2014: Registration of delegates and sending out of confirmations and

invoices, update of website with all accepted abstracts

August 2014: Inclusion of programme, speakers info and CVs on conference app,

Registration of delegates and sending out of confirmations and invoices

September 2014: Registration of delegates and sending out of confirmations and

invoices, Finalisation of programme for opening ceremony and involvement of EU

and Scottish officials

October 2014: Conference taking place, Update on conference planning, finances

and programme to AE Board

November 2014: Evaluation of conference evaluation forms received at

conference, Financial reporting, Inclusion of all powerpoint presentations on

conference website

December 2014: Inclusion of conference videos on conference website,

finalisation of conference accounts, Presentation of conference accounts and

evaluation to AE Board

Participants

- Please give an analysis of numbers, country of origin and organisational/scientific

background of participants


41

- European vs. International participants

- How did you attract participants?

- Did you achieve your target in participation rate?

In total, 832 participants were registered for the Alzheimer Europe Conference in

Glasgow, Scotland, UK. Since Alzheimer Europe had budgeted for a participation of

between 400 and 500 delegates, the target was more than achieved.

In its marketing activities, AE mainly focused on e-mail communication with the

members of its significant mailing lists of over 3,000 contacts with an interest in

dementia.

In addition, AE was able to rely on the support of its national member organisations

and its collaboration with other European networks (Interdem, European Association

of Geriatric Psychiatry, etc) to further circulate and dissemination conference related

announcements.

The following tables provide a breakdown of participants by country and by

professional background.

Breakdown by country

2014

Glasgow 2013 Malta

2012 Vienna

2011 Warsaw

United Kingdom 479 73 57 42

Netherlands 36 24 28 7

Italy 29 27 29 24

Germany 28 29 24 27

Finland 24 18 3 2

Iceland 22 3 3 2

Ireland 20 12 19 8

Norway 18 11 8 6

Switzerland 18 12 19 6

France 15 18 20 20

Luxembourg 14 11 17 17

Turkey 13 13 0 50

Belgium 12 16 22 11

Austria 11 4 136 3

Spain 11 5 7 14

Denmark 8 8 4 3

Japan 7 3 1 1

Greece 6 8 7 63

Singapore 6 0 0 1

USA 6 13 11 10

Australia 5 9 13 4

Czech Republic 5 8 8 2

Hungary 5 6 3 0


42

Sweden 5 12 7 3

Jersey 4 4 4 0

Slovenia 4 5 4 0

Israel 3 1 0 0

Cyprus 2 0 4 3

Gibraltar 2 0 0 0

Malta 2 105 1 1

Monaco 2 7 6 3

Poland 2 3 3 99

Brazil 1 0 0 0

Canada 1 1 0 1

Croatia 1 9 1 1

Estonia 1 0 0 0

Portugal 1 1 6 19

Romania 1 34 7 2

Russia 1 0 16 0

Slovakia 1 1 8 1

Bulgaria 0 0 4 2

Chili 0 0 1 0

Georgia 0 0 1 0

Hong Kong 0 0 1 0

India 0 0 1 0

Lebanon 0 2 0 0

Liechtenstein 0 1 0 0

Lithuania 0 2 0 4

Macedonia 0 1 1 1

Mexico 0 0 1 1

Morocco 0 2 0 0

New Zealand 0 1 0 0

Saudi Arabia 0 0 1 0

South Africa 0 1 0 1

Taiwan 0 1 1 1

Thailand 0 2 0 3

Tunisia 0 2 0 0

Uganda 0 0 0 3

Total 832 529 518 472


43

Breakdown by category

2014 2013 2012 2011

Glasgow Malta Vienna Warsaw

Health or social care professionals 232 161 104 132

Alzheimer association staff and volunteers 240 147 157 119

Academics/Researchers 164 140 167 166

Industry representatives 50 38 31 30

Persons with dementia/carers 75 30 44 19

Policy makers/Civil servants 25 13 15 6

Students 46 0 0 0

Total: 832 529 518 472

Breakdown by registration date

2014 2013 2012

Vienna

2011

Glasgow Malta Warsaw

February 0 0 2 0

March 0 2 4 0

April 12 7 7 11

May 11 15 21 7

June 283 150 177 143

July 181 171 104 42

August 42 26 74 80

September 93 147 112 168

October 210 11 17 21

Total 832 529 518 472

Sponsorship

- Who contributed in which way to your conference?

In addition to the European Commission, Alzheimer Europe received a grant from the

Scottish Government which supported the welcome reception of the conference.

Alzheimer Europe had also developed a sponsorship programme targeted at

companies interested in supporting the Annual Conferences. Based on previous

conferences and similar conferences, AE provided three tiers of sponsorship for

companies: bronze as general support, silver for companies interested in having a

stand and gold for companies wishing to organise a satellite symposium. The

sponsorship programme clearly specified that companies had to abide by EU

legislation with regard to direct to consumer advertising on medicinal products.

The following companies provided sponsorship:

Bronze: Piramal

Silver: Roche and SCA Hygiene Products

Gold: Lilly


44

All sponsorship was acknowledged on the conference website and published

programme:

http://www.alzheimer-europe.org/Conferences/Previous-conferences/2014-

Glasgow/Sponsors

Marketing and dissemination

- Which marketing and dissemination activities did you carry out before and during

the conference.

Alzheimer Europe dedicated a section of its established website (with over 500,000

visitors in 2014) to its 24th AE Conference in Glasgow, Scotland, UKa and provided up-

to-date information on the programme, as well as abstract submission and registration

facilities.

AE also developed an extensive e-mail mailing list (containing over 4,500 contacts)

which it keeps up-to-date and expands upon. This was used for the dissemination of

conference announcements via e-mail. Since 2013, AE has been partnering with

Newsweaver which provides more advanced e-mail sending facilities to Alzheimer

Europe free of charge.

Regular updates on important deadlines (abstract submission deadline, early bird

registration deadline etc) and planning developments (conference programme, invited

speakers etc) were sent via this facility.

Leaflets with information on the conference were printed and sent to other

conferences to be included in participants bags.

All conference announcement and news were also spread via the Facebook pages and

Twitter of Alzheimer Europe, as well as those of a number of AE member

organisations.

During the conference, Alzheimer Europe used live tweeting. The hashtag #24AEC was

used prior to and during the conference to inform people about key messages and

findings presented at the conference. The hashtag generated a lot of interest and AE

will use this method for future events as well.

Financial management

- Did you incur fewer costs of more than 10% to the estimated budget of the grant

agreement?

- If yes, please describe the major reasons for that.

- Did you have difficulties in the financial management of the conference?

Alzheimer Europe did not incur fewer costs than estimated. Also, the organisation did

not encounter any difficulties with the financial management of the conference.


45

Post-conference follow-up

Dissemination activities after the conference

- Please describe shortly the dissemination activities carried out after the

conference.

- How can EAHC or the EC further communicate on this conference?

Alzheimer Europe reported on the 24th AE Conference in Glasgow, Scotland, UK in its

e-mail newsletter which was circulated to over 4,500 contacts in Europe with an

interest in dementia. The organisation also dedicated a special supplement of its

Dementia in Europe Magazine to a presentation of the conference. This special

supplement will be disseminated in March 2015 together with Issue 19 of the

Dementia in Europe magazine and provided

an update on the policy makers attending the opening ceremony of the

conference and their statements on dementia,

an overview of all keynote speakers and their key messages at the conference,

a special presentation of the contributions of people with dementia participating

at the Alzheimer Europe conference.

Conference website

- Please give the address of the conference website

- Are presentations available

- How long will the conference website be available after the conference

Alzheimer Europe has a special section on its general website which is dedicated to its

Annual Conferences: http://www.alzheimer-europe.org/Conferences

Rather than dedicating a website solely to its conference, the organisation opted for

integrating conference information on the existing AE website, as this will ensure that

visitors:

Become familiar with the website and can come back in future years to submit

abstracts and register without needing to learn a new website address,

Can find information on other activities of Alzheimer Europe,

Find out information about previous conferences.

Alzheimer Europe has included pdf versions of Powerpoint presentations on the

website section dedicated to the Glasgow conference:

http://www.alzheimer-europe.org/Conferences/Previous-conferences/2014-Glasgow

It has done so for all presentations for which the speakers gave consent for their

presentations to be used in such a way.

In addition, Alzheimer Europe videoed a number of keynote presentations which have

also been made available on the conference website. Again consent was requested

from speakers before including the videos of presentations online.

The presentations and videos will remain online on the website of Alzheimer Europe

for an indefinite period. This constitutes another advantage of having opted to include

http://www.alzheimer-europe.org/Conferences


46

all conference information on the existing AE website rather than a new conference

website.

Publication, Abstracts, Articles

- Please list the publications arising from this conference.

- Where are they accessible?

The conference did not give rise to any scientific publication.

The abstracts of all presentations were included in the conference programme, as well

as the conference website. All abstracts remain available and are fully searchable on

the AE website:

http://www.alzheimer-europe.org/Conferences/Previous-conferences/2014-

Glasgow/Detailed-Programme-abstracts-and-presentations

The conference also generated interesting media coverage as can be seen from the

below list:

12 October 2014, Scottish Express: http://www.express.co.uk/news/uk/521657/Downton-Abbey-helps-the-carers-of-dementia-sufferers

14 October 2014, allmediascotland.com: http://www.allmediascotland.com/media-releases/73428/biggest-dementia-conference-in-scotland-to-be-held-in-glasgow-this-month/

15 October 2014, Glasgow Evening Times: S:\DOCUMENTS\AE MEETINGS\Annual Conferences\2014 Glasgow\PRESS\15Oct2014 Glasgow Evening Times.pdf

15 October 2014, Holyrood: https://www.holyrood.com/articles/interviews/keeping-it-dignified

15 October 2014, Alzheimer Scotland: http://www.alzscot.org/news_and_community/news/3164_biggest_dementia_conference_in_scotland_happening_next_week

19 October 2014, radio appearance by Amy Dalrymple (Head of Policy, Alzheimer Scotland) on “Crossfire”, covering weekly headlines and featuring dementia & conference discussion (Radio Scotland - http://www.bbc.co.uk/programmes/b04lsq2g)

Monday 20 October – interview with Nancy McAdam and conference feature on lunchtime and

evening television news, STV (Scottish television)

Wednesday 22 October – short piece as part of radio Morning Call programme (Radio Scotland, approx. 9.25am)

22 October 2014, The Courier UK: http://www.thecourier.co.uk/news/politics/frank-kopel-s-widow-urges-health-secretary-to-stop-pussyfooting-around-care-pledge-1.640785

23 October 2014, Let’s Talk About Dementia blog: http://letstalkaboutdementia.wordpress.com/2014/10/23/24aec-dignity-and-autonomy-in-dementia/

25 October 2014, BBC News Scotland: http://www.bbc.com/news/uk-scotland-29758896

26 October 2014, Pippa Kelly blog: http://pippakelly.co.uk/2014/10/alzheimer-europe-2014/

26 October 2014, Shibley Rahman blog: http://livingwelldementia.org/2014/10/26/the-24th-annual-conference-for-alzheimer-europe-put-people-with-dementia-in-the-driving-seat-deservedly-so/

27 October 2014, D for Dementia blog: http://d4dementia.blogspot.com/2014/10/inspiring-end-of-life-care.html?spref=tw

28 October 2014, The Scotsman: http://www.scotsman.com/news/health/eye-test-could-detect-early-stages-of-dementia-1-3584553

29 October 2014, NoviLunio (Italy): http://novilunio.net/dignita-e-autonomia-alla-conferenza-annuale-di-alzheimer-europe/

5 November 2014, SDWG blog (Scotland): http://www.sdwg.org.uk/news-scottish-dementia-working-group/2293/

7 November 2014, Twitter (Record of remaining Tweets as at this date): S:\DOCUMENTS\AE MEETINGS\Annual Conferences\2014 Glasgow\PRESS\Hashtag 24 AEC.docx

http://www.express.co.uk/news/uk/521657/Downton-Abbey-helps-the-carers-of-dementia-sufferers

http://www.express.co.uk/news/uk/521657/Downton-Abbey-helps-the-carers-of-dementia-sufferers

http://www.allmediascotland.com/media-releases/73428/biggest-dementia-conference-in-scotland-to-be-held-in-glasgow-this-month/

http://www.allmediascotland.com/media-releases/73428/biggest-dementia-conference-in-scotland-to-be-held-in-glasgow-this-month/

https://www.holyrood.com/articles/interviews/keeping-it-dignified

http://www.alzscot.org/news_and_community/news/3164_biggest_dementia_conference_in_scotland_happening_next_week

http://www.alzscot.org/news_and_community/news/3164_biggest_dementia_conference_in_scotland_happening_next_week

http://www.bbc.co.uk/programmes/b04lsq2g

http://www.thecourier.co.uk/news/politics/frank-kopel-s-widow-urges-health-secretary-to-stop-pussyfooting-around-care-pledge-1.640785

http://www.thecourier.co.uk/news/politics/frank-kopel-s-widow-urges-health-secretary-to-stop-pussyfooting-around-care-pledge-1.640785

http://www.bbc.com/news/uk-scotland-29758896

http://pippakelly.co.uk/2014/10/alzheimer-europe-2014/

http://livingwelldementia.org/2014/10/26/the-24th-annual-conference-for-alzheimer-europe-put-people-with-dementia-in-the-driving-seat-deservedly-so/

http://livingwelldementia.org/2014/10/26/the-24th-annual-conference-for-alzheimer-europe-put-people-with-dementia-in-the-driving-seat-deservedly-so/

http://d4dementia.blogspot.com/2014/10/inspiring-end-of-life-care.html?spref=tw

http://d4dementia.blogspot.com/2014/10/inspiring-end-of-life-care.html?spref=tw

http://www.scotsman.com/news/health/eye-test-could-detect-early-stages-of-dementia-1-3584553

http://www.scotsman.com/news/health/eye-test-could-detect-early-stages-of-dementia-1-3584553

http://novilunio.net/dignita-e-autonomia-alla-conferenza-annuale-di-alzheimer-europe/

http://novilunio.net/dignita-e-autonomia-alla-conferenza-annuale-di-alzheimer-europe/


47

11 November 2014, CEAFA web article: http://www.ceafa.es/es/proyectos/ceafa-alzheimer-europe

14 November 2014, European Brain Council newsletter: S:\DOCUMENTS\AE MEETINGS\Annual Conferences\2014 Glasgow\PRESS\14Nov2014 European Brain Council newsletter.docx

14 November 2014, Nuffield Bioethics blog: http://nuffieldbioethics.org/blog/2014/dementia-truth-rights/

2 December 2014, Aging Care online article: http://www.care2.com/greenliving/how-coffee-can-protect-your-brain.html

2 December 2014, Vending Market Watch online article: http://www.vendingmarketwatch.com/news/12023564/moderate-coffee-consumption-may-lower-the-risk-of-alzheimers-disease-by-up-to-20-percent

4 December 2014, Alzheimer’s News Today article: http://alzheimersnewstoday.com/2014/12/04/life-long-consumption-of-3-5-cups-of-coffee-lowers-alzheimers-risk/

8 December 2014, D for Dementia blog - highlights of 2014: http://d4dementia.blogspot.com/2014/12/reflections-on-2014.html

Evaluation of the conference

- Please describe shortly the evaluation activities carried out

- If this is a recurrent conference, please compare your findings to the earlier

conferences

Alzheimer Europe carried out a user evaluation which is included below.

Participant feedback

- Did you make a participant feedback survey?

- What were the major issues stated?

- Which session has attracted most participants, which the least

- How was the plenary session rated?

- How useful was the programme perceived?

In total 92 feedback forms were received. These were filled in and returned by:

23 volunteers or staff members of an Alzheimer association (25%)

45 health and social care professionals (48.91%)

24 academics and researchers (26.09%)

4 carers (4.35%)

2 people with dementia (2.17%)

1 policy makers or civil servants (1.09%)

1 industry representatives (1.09%) and

2 other (2.17%)

Plenary sessions

The various plenary sessions were rated as follows (Malta percentages in brackets):

Poor Adequate Good Very Good

Opening ceremony

1.92% (1.9%) 5.77% (10.48%) 48.08% (29.52%) 44.23% (58.1%)

Plenary 1 4.55% (0%) 9.09% (4.62%) 40.91% (43.85%) 45.45% (51.54%)

Plenary 2 2.86% (1.48%) 12.86% (6.67%) 40.00% (46.67%) 44.29% (45.19%)

Plenary 3 1.35% (0.82%) 8.11% (9.84%) 21.62% (33.61%) 68.92 %(55.74%)

http://www.ceafa.es/es/proyectos/ceafa-alzheimer-europe

http://nuffieldbioethics.org/blog/2014/dementia-truth-rights/

http://nuffieldbioethics.org/blog/2014/dementia-truth-rights/

http://www.care2.com/greenliving/how-coffee-can-protect-your-brain.html

http://www.care2.com/greenliving/how-coffee-can-protect-your-brain.html

http://www.vendingmarketwatch.com/news/12023564/moderate-coffee-consumption-may-lower-the-risk-of-alzheimers-disease-by-up-to-20-percent

http://www.vendingmarketwatch.com/news/12023564/moderate-coffee-consumption-may-lower-the-risk-of-alzheimers-disease-by-up-to-20-percent

http://alzheimersnewstoday.com/2014/12/04/life-long-consumption-of-3-5-cups-of-coffee-lowers-alzheimers-risk/

http://alzheimersnewstoday.com/2014/12/04/life-long-consumption-of-3-5-cups-of-coffee-lowers-alzheimers-risk/

http://d4dementia.blogspot.com/2014/12/reflections-on-2014.html


48

Plenary 4 1.96% (0%) 5.88% (2.07%) 33.33% (20%) 58.82% (54.48%)

Poor/Adequate Good/Very Good

Opening ceremony 7.69% (12.38%) 92.31% (87.62%)

Plenary 1 13.64% (4.62%) 86.36% (95.38%)

Plenary 2 15.71% (8.15%) 84.29% (91.85%)

Plenary 3 9.46% (10.66%) 90.54% (89.34%)

Plenary 4 7.84% (2.07%) 92.16% (97.93%)

Parallel sessions


Topics chosen 0% (0%) 5.81% (9.03%) 48.84%

(47.74%) 45.35%

(43.23%)

Quality of presentations 1.20% (1.28%) 7.23% (19.23%) 55.42%

(57.69%) 36.14%

(21.79%)

Duration of presentations 10.23% (4.49%) 25.00%

(21.79%) 36.36%

(51.28%) 28.41%

(21.79%)

Time for discussion 27.91% (27.1%) 23.26%

(29.03%) 26.74%

(26.45%) 22.09%

(17.42%)


Topics chosen 5.81% (9.03%) 94.19% (90.97%)

Quality of presentations 8.43% (20.51%) 91.57% (79.49%)

Duration of presentations 35.23% (26.28%) 67.77% (73.72%)

Time for discussion 51.16% (56.03%) 48.84% (43.97%)

Social programme


Welcome Reception 1.85% (0%) 12.96% (1.89%) 35.19%

(25.47%) 50% (72.64%)

Gala Dinner 0% (3.23%) 6.67% (4.84%) 36.67%

(29.03%) 56.67% (62.9%)

Coffee breaks 10.34% (0.66%) 28.74% (5.96%) 42.53%

(28.48%) 18.39% (64.9%)

Lunches 17.24% (0.68%) 34.48% (3.42%) 34.48%

(20.62%) 13.79%

(73.79%)


Welcome Reception 14.81% (1.89%) 85.19%

(98.11%)

Gala Dinner 6.67% (8.07%) 93.33%

(91.93%)

Coffee breaks 39.08% (6.62%) 60.92%

(93.38%)

Lunches 51.72% (4.1%) 48.28%

(95.90%)


49

Conference venue and organisation


Online registration 3.80% (3.1%) 13.92% (5.43%) 40.51%

(33.33%) 41.77%

(58.14%)

Conference website 2.44% (0.71%) 10.98% (5%) 46.34%

(42.14%) 40.24%

(52.14%)

Welcome desk 3.49% (0.66%) 17.44% (5.26%) 32.56%

(28.95%) 46.51%

(65.13%)

Conference venue 12.05% (0% ) 15.66% (1.29%) 48.19%

(18.71%) 24.10% (80%)

Staff friendliness 0% (0%) 7.06% (1.94%) 30.59%

(19.35%) 62.35%

(78.71%)

Orientation and sign-posting 10.23% (0%) 15.91% (7.89%) 44.32%

(35.53%) 29.55%

(56.58%)

Meeting room for PWD 3.57% (0%) 3.57% (6.82%) 35.71%

(22.73%) 57.14%

(70.45%)

Conference material and book 1.16% (0%) 9.30% (2.55%) 24.42%

(26.11%) 65.12%

(71.34%)

Poster exhibition 8.05% (0.66%) 21.84%

(14.47%) 28.74%

(46.71%) 41.38%

(38.16%)


Online registration 17.72% (8.53%) 82.28%

(91.47%)

Conference website 13.41% (5.71%) 86.59%

(94.29%)

Welcome desk 20.93% (5.92%) 79.07%

(94.08%)

Conference venue 27.71% (1.29%) 72.29%

(98.71%)

Staff friendliness 7.06% (1.94%) 92.94%

(98.06%)

Orientation and sign-posting 26.14% (7.89%) 73.86%

(92.11%)

Meeting room for PWD 7.14% (6.82%) 92.86%

(93.18%)

Conference material and book 10.47% (2.55%) 89.53%

(97.45%)

Poster exhibition 29.89% (15.13%) 70.11%

(84.87%)

Final verdict

Asked whether they would recommend an Alzheimer Europe Conference, the

breakdown was as follows (Malta statistics in brackets):

yes 96.47% (97.44%)

no 3.53% (2.56%)

Process evaluation

- Please use the indicators set out in the Grant Agreement

- Provide concrete numbers for the indicators

- Please discuss the numbers in relation to the target and your objectives

Output evaluation





50

Outcome evaluation




As the project agreement did not make a clear distinction between process, output

and outcome indicators, these issues are discussed together: Alzheimer Europe was

able to achieve and surpass the majority of output indicators included in the project

agreement.

Indicator Result Target

First announcements distributed 4,600 5,000

Second announcements distributed 4,600 2,500

Submitted abstracts 331 100

Registered participants by early bird deadline 306 200

Bronze sponsors 2 4

Silver sponsors 2 2

Gold sponsors 1 1

Respected deadlines (key dates) 100% 100%

Participants 832 450

EU countries represented 25 20

People with dementia/carers attending 75 20

Speakers and presenters 191 80

Sessions respecting time table for beginning and end of sessions

Not monitored separately, but no timing issues reported

95%

Returned feedback forms for evaluation 11.06% 10%

Percentage rating conference programme as good or very good

84.29-92.31% 80%

Percentage rating organisational92.94% aspects as good or very good

70.11-92.94% 80%

Plenary and parallel session presentations linked to EU initiatives and projects

7/37 4/25

Discussion in relation to conference objectives

- Did you achieve your objectives?

- Please state clear reasons, why you think you achieved and/or did not achieve the

conference objectives!

- Please support your arguments with objective numbers.

As indicated above, the key aim of the conference was to focus on the promotion of

autonomy and dignity in dementia and to organise an exchange of information and

best practices in the fields of rights (rights and responsibilities, proxy decision making,

consent and advance directives, ethical issues), policy (dementia strategies, post-

diagnostic support, socio-economic cost of dementia, prevention), people with

dementia (involving people with dementia, peer support groups, dementia-friendly

communities, perceptions and image of dementia) and care (home care, residential

care, hospital caree, palliative care).

When launching the call for abstracts and presentations on these issues, AE was

unsure whether sufficient numbers of high quality abstracts would be submitted. This

concern proved to be unfounded as 331 abstracts were submitted in total with 25 for

for the category rights, 59 for policy, 129 for people and 118 under care. The aim of

stimulating an exchange of information, experiences, projects and best practices was

therefore fully met. The chosen keynote speakers were able to present additional

examples of best practices in the chosen fields.

The aim of collaborating with existing EU initiatives was also met, as key contributions

were provided by:


51

Jürgen Scheftlein from DG Health and Food Safety, C1 on the European Union’s

contribution to addressing the challenge of dementia and Alzheimer’s disease,

Armelle Leperre-Desplanques, French Health Authority on the ALCOVE Joint

Action on Dementia and its tool box for preventing behavioural problems in

dementia and avoiding the use of anti-psychotics,

Major results and key findings

- Please shortly summarise the major results of this conference

- Please shortly summarise the key findings?

Alzheimer Europe held its 24th Annual Conference in Glasgow during 20-22 October

2014 under the motto “Dignity and autonomy in dementia”. This year’s conference

was co-organised with Alzheimer Scotland and attracted more than 800 delegates,

including 44 people with dementia. The programme included some 190 speakers and

170 poster presentations.

The conference opened with welcome speeches by Heike von Lützau-Hohlbein and

Henry Simmons, the respective Chairs of Alzheimer Europe and Alzheimer Scotland.

They were followed by Jeanette Maitland from the National Dementia Carers Action

Network and Henry Rankin, Chair of the Scottish Dementia Working Group. In turn,

they described their groups’ efforts to support carers of people with dementia and to

readjust to daily life after a diagnosis of dementia. Geoff Huggins, Acting Director of

Health and Social Care Integration in the Scottish Government, was the keynote

speaker for the evening. His presentation, “A rights based approach to developing and

implementing Scotland’s National Dementia Strategy”, highlighted many aspects of

the strategy that was first implemented in 2008. The opening ceremony concluded

with the official signing of the Glasgow Declaration by the speakers and also John

Laurie, Convener of Alzheimer Scotland.

On the following day, the first plenary session was chaired by Charles Scerri, General

Secretary of the Malta Dementia Society, with a focus on “Promoting a rights-based

approach to dementia”. Colin McKay, Chief Executive of the Mental Welfare

Commission for Scotland, presented Scotland’s national human rights plan and its

implications for people with dementia. He was followed by Matthias Kloth,

Administrator in the Directorate General of Human Rights and Rule of Law of the

Council of Europe. He spoke about the organisation’s promotion of human rights of

older persons, including activities of the European Court of Human Rights. Grainne

McGettrick, Manager for Research and Policy Advocacy at Acquired Brain Injury

Ireland, presented the UN Disability Convention as an instrument for people with

dementia and their carers. The last speaker was Maja Groff, Senior Legal Officer at the

Permanent Bureau of the Hague Conference on Private International Law. Ms Groff

spoke about globalisation and the protection of vulnerable adults abroad, including

various solutions offered by the Hague 2000 Convention.

The second plenary session, chaired by Henry Simmons, consisted of presentations

and a round table discussion on dementia strategies and policies. Alex Neil, Scotland’s

Cabinet Secretary for Health and Wellbeing, opened the session with a rousing speech

about the importance of involving people with dementia in all aspects of policymaking.

He also became the first European Minister to sign the Glasgow Declaration. The next

speaker was Jürgen Scheftlein, Policy Officer in the European Commission’s

Directorate-General for Health and Consumers. He gave an overview of EU policies on

dementia, such as the ALCOVE project and EIP-AHA - the European Innovation

Partnership on Active and Healthy Ageing.


52

Mr Simmons then presented the participants of the round table discussion: Geoff

Huggins, Dorothée Knauf-Hübel (Head of the Division de la Médecine Curative at the

Luxembourg Ministry of Health), Benoit Lavallart (responsible for the French Alzheimer

plan among the Ministries of Health, Social Affairs and Research), Charles Scerri and

Marc Wortmann (Executive Director of ADI). They discussed the challenges of sharing

best practices among countries that have varying cultures and definitions of patient

needs and expectations. They also spoke about implementing dementia strategies in

small countries such as Luxembourg and Malta. The panellists agreed that a successful

dementia strategy requires political commitment at the highest levels, including long-

term funding. Finally, they expressed their support for the Glasgow Declaration: a

European Dementia Strategy would clearly be beneficial in countries that lack a

strategy, but also as a benchmark where strategies are already in place.

Plenary session 3 focused on involving people with dementia and was chaired by

Daphne Wallace, who is living with dementia herself. The first speaker was Helga

Rohra, Chair of the European Working Group of People with Dementia (EWGPWD),

who spoke about the changes in how people with dementia are perceived since her

own diagnosis seven years ago. She was followed by Amy Dalrymple (Head of Policy

for Alzheimer Scotland) who explained how the organisation’s “8 Pillars Model” is

developing into an integrated health and social care model of support for people with

dementia. Marie-Jo Guisset from the Fondation Médéric Alzheimer presented the

activities of EFID, the European Foundations Initiative on Dementia. She focused on

the “EFID Awards”, a campaign to reward local initiatives that promote social inclusion

of people with dementia. The final speaker was Prof Myrra Vernooij-Dassen, Director

of Nijmegen Alzheimer Centre in the Netherlands. She presented INTERDEM - a

European network of researchers on early detection and psycho-social interventions in

dementia - and expanded on the group’s current focus on dignity and the role of

stigma in dementia.

The last plenary session was chaired by Henry Simmons and concentrated on

innovation and care. Prof Debbie Tolson, Director of the Alzheimer Scotland Centre for

Policy and Practice, showed examples of practice innovation in policy development,

evidence-informed care and enabling the work force to become agents of change. She

was followed by Dianne Gove, Director of Projects for Alzheimer Europe, who

presented AE’s new report on improving continence care for people with dementia

living at home. Hugh Masters, interim Associate Chief Nursing Officer for Scotland,

explained how specialist nurses and dementia champions are driving change in acute

hospital care for people with dementia. The final presentation was made by Dr Kai

Saks, Associate Professor of Internal Medicine at the University of Tartu, Estonia. She

presented the findings of the “RightTimePlaceCare” project, which developed best

practices for the transition from formal professional home care to institutional long-

term nursing care facilities.

Conference delegates were also able to attend 28 parallel sessions about legal, ethical

and scientific aspects of living with dementia, including four sessions dedicated to

Alzheimer Scotland’s activities. In addition, three special symposia focused on clinical

trials, nutrition and cognitive function and the activities of the EWGPWD.

The conference ended with an invitation to attend the 25th Alzheimer Europe

Conference in Slovenia. This was followed by closing remarks from Henry Simmons

and Iva Holmerova, Vice-Chairperson of Alzheimer Europe. The 24th Alzheimer Europe

Conference received funding from the European Union in the framework of the Public

Health programme.


53

Target groups and added value

- How does the target group(s) benefit from this conference?

- Please describe the added value of the conference for the EU citizen.

- Which added value has the EU co-funding given to the organisation of the

conference?

In the field of dementia, Alzheimer Europe Conferences are unique in that they target

a very mixed audience comprised on the one hand of healthcare professionals and

academics and on the other hand of representatives of Alzheimer associations, family

carers and people with dementia. In addition, some policy makers and industry

representatives also attend these conferences. This was also the case for the 24th

Alzheimer Europe conference and it was this multi-disciplinary approach that was

highlighted by many participants in their feedback about the conference.

Also, an innovative aspect of the conference was the full involvement of people with

dementia in the planning and organisation of the conference. The European Working

Group of People with dementia, which advises Alzheimer Europe and campaigns to

change the perceptions of the disease and of people affected, provided invaluable

input. A representative was involved in the evaluation of submitted abstracts and

provided advice on using a non-stigmatising language when referring to people with

dementia (rather than victims or sufferers etc). Also, a workshop was organised by

the group and representatives were involved in the opening ceremony and as a

keynote speaker in one of the plenary sessions. The impact of their experiences and

testimonies on other participants was a highlight of the conference. Thanks to the

collaboration with Life Changes Trust, over 50 people with dementia from Scotland

were able to attend the Annual Conference.

The AE Conference was also a great opportunity for PhD students to present their

latest research and exchange information with other students from other EU countries.

The partnership which Alzheimer Europe developed with the Interdem network and

which enabled this network to have its business meetings in the framework of the AE

conference were of particular importance in that respect. For its 24th conference, AE

was able to specially reduced rates for students.

EU co-funding was key in developing a financial plan which had to rely less on

registration fees by individuals and as a result, AE was able to provide much lower

registration fees than similar length conferences in the field of dementia. In addition,

AE was in a position to invite high level key opinion leaders to share their latest

research and activities with a wider audience. Finally, AE was delighted to have the

participation of a Commission representative in the plenary session dedicated to a

discussion on the development of dementia strategies.

EU funding was also considered important in the decision of Scottish overnment

officials to support the conference and as a result, Alex Neil, the Cabinet Secretary for

Health attended the opening of the conference.

Major problems and lessons learned

- Which major problems did the conference face?

- Were these problems addressed in your Risk analysis and contingency planning?

- Were these problems unforeseen?

- How did you handle them?

- Which lessons did you learn from organising this conference?


54

Alzheimer Europe did not encounter any major problems in the run-up and

organisation of the conference nor were any particular problems encountered during

the conference days.

Alzheimer Europe had identified financial shortfalls, flight disruptions, lower than

expected numbers of submitted abstracts and participants and technical problems

during the conference as potential risks and had included these in contingency

planning. However, none of these risks materialised.

Future recommendations

- What would you do different, if you would plan this conference with your

knowledge of today?

- Which recommendations can you give to other conference organisers?

The higher than expected attendance and participation at the conference (over 800

rather than the anticipated 450 participants) meant that a bigger venue may have

been preferable. Due to the greater number of participants, a more moderate

sandwich lunch rather than sit down menu had to be selected. Also, we received some

complaints that the area for the poster exhibition was too and that the question and

answer time was sometimes limited if there were 6 speakers in a parallel session.

For future conferences, AE will consider limiting the number of speakers and explore

different presentation models which will allow for greater interaction with the

audience.

Based on the qualitative feedback by participants, it is clear however that the chosen

themes and presenters were well received and appreciated by participants.

Participants enjoyed the available networking opportunities. The involvement of people

with dementia as participants, speakers and moderators was particularly welcomed.


55

Further remarks - Please state further remarks that you find noteworthy

No further remarks

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