24th Alzheimer Europe Conference Dignity and autonomy in dementia 20–22 October 2014 ...

138 Pages·2014·1.08 MB·English

24th Alzheimer Europe Conference
Dignity and autonomy
in dementia
20–22 October 2014 / Glasgow
Abstract Book
Index
Plenary Sessions 3
Alzheimer Scotland Sessions 7
Parallel Sessions 12
Special Symposia 56
INTERDEM Academy 57
Posters 57
The 24th Alzheimer Europe Conference in Glasgow, Scotland has received funding from
the European Union, in the framework of the Public Health Programme.
Dignity and autonomy in dementia / Glasgow 2014
Abstract Book / Plenary Sessions
Plenary Sessions In February 2014, the Council of Europe’s Committee of Ministers has
adopted a “Recommendation on the Promotion of Human Rights of
PL1.1 Scotland’s national human rights plan and its implications Older Persons”. It seeks to promote, protect and ensure the full and
for people with dementia equal enjoyment of all human rights and fundamental freedoms by
McKay Colin all older persons, and to promote respect for their inherent dignity.
The Recommendation is a common position by all 47 member states
The presentation will outline how legislation and policy affecting of the Council of Europe, and has a special chapter dedicated to the
people with dementia in Scotland has made a fundamental shift in issue of “Autonomy and participation”. It attempts to tailor already
the last 15 years from a paternalistic treatment-focused paradigm to existing European legal standards specifi cally to the situation and
one informed by a human rights perspective. needs of older persons, and to close gaps in their implementation.
In the late 90’s, it became clear that there was no adequate legal The presentation will focus on the above-mentioned standards,
framework for substitute decision making for people who lacked with a particular emphasis on the situation of persons suffering
decision-making capacity. Following a successful campaign led from dementia.
by non-governmental organizations, the Adults with Incapacity
(Scotland) Act 2000 modernized the law and established ground- PL1.3 Th e UN Disability Convention as an instrument for people
breaking rights-based principles. These principles were developed with dementia and their carers
further in the radical reform of mental health law undertaken by Mcgettrick Gráinne
the Millan committee, enshrined in the Mental Health (Care and
Treatment) (Scotland) Act 2003. It is rare to hear any explicit reference to “rights” and “dementia”.
More recently, the Scottish Human Rights Commission has worked Dementia as a disability has not had the same exposure to human
with the Scottish Government and partners to embed human rights discourses as other forms of disability. The human rights
rights based practice, including in health and social care. This has lens has not been applied in any depth in relation to the lived
informed the Government’s over-arching dementia strategy, and experience, the policy response or the services that are provided to
the Scottish National Action Plan for Human Rights sets out further people with dementia. However, in recent years a number of rights-
measures to be taken, emphasizing Participation, Accountability, based initiatives have emerged on the dementia landscape. As a
Non-discrimination, Empowerment and Legality. result, there is a new emerging dialogue in dementia which is now
The presentation will discuss the impact of these developments, beginning to translate into dementia policy. There are a number of
including the increasing emphasis on the involvement of people contributory factors to this shift in tone and emphasis not least
with dementia and their carers both in controlling their own support, the elevation of the voice of the person with dementia as well as
and in the development of policy. It will consider the evolving role national and international legislation to provide a framework.
of protective bodies like the Mental Welfare Commission, and how One such international instrument is 2006 United Nations
to build human rights standards into the design and monitoring Convention on the Rights of People with Disabilities (UNCRPD). This
of services. Finally, it will touch on emerging challenges, including international treaty promotes and protects the rights of the person
the UK Supreme Court’s recent interpretation of Article 5 of ECHR, with a disability. It aims to ensure their enjoyment of human rights
which has widened the scope of “deprivation of liberty” requiring and equality under the law. If we view dementia as a “disability”
legal authorization; and the General Comment on Article 12 of the then the UNCRPD has signifi cant relevance and meaning and can
UN Convention on the Rights of People with Disabilities, which has shape the fi eld of dementia at the global and local levels. Drawing
called into question any form of substitute decision making. on the experiences to date in Ireland and elsewhere, this paper
discusses the potential and highlights three major implications of
PL1.2 Council of Europe activities on decision making the UNCRPD for dementia. These are:
in dementia 1. Providing a framework to rethink and re-imagine dementia as
Kloth Mathias a rights and equality issue and reframe how we talk dementia
(and who does the talking)
The Council of Europe is an intergovernmental organization with 47 2. Acting as a catalyst for change as we begin to move towards
member states based in Strasbourg that seeks to promote human the social/right-based model of dementia (where people with
rights, democracy and the rule of law. Its most well-known treaty is dementia themselves as the change agents) and a shift in the
the European Convention on Human Rights, whose application is power dynamics and stakeholder relationships
supervised by the European Court of Human Rights. The Council of 3. Utilising a specifi c “human rights based approach” (HRBA) in
Europe has been advocating the human rights of older persons for our work and how that could impact on how policy gets shaped,
many years, notably through the case-law of the European Court how services are provided, what research gets done and how we
of Human Rights and the European Social Charter, which explicitly advocate, fundraise and communicate in the public spheres.
protects the right of older persons to social protection.
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Abstract Book / Plenary Sessions
PL1.4 Globalization and the protection of vulnerable adults: Ireland, Scotland and Wales), and other governments are in the
solutions off ered by the Hague 2000 Convention process of following suit. Equally, the European Commission
Groff Maja adopted its Communication on a European initiative on Alzheimer’s
disease and other dementias in which areas for European action
The ageing of the world’s population, combined with greater were outlined.
international mobility, has created the need for improved In this round-table discussion, we will have the opportunity to
international protection of vulnerable adults by means of legal contrast the approaches taken in Finland, France, Luxembourg and
regulation and international co-operation. The increased lifespan Scotland and to discuss how actions can, and should, be coordinated
in many countries is accompanied by a corresponding increase in at a European level.
the incidence of conditions linked to advanced age. As international The discussion will be moderated by Henry Simmons, Chief Executive
travel becomes easier, many people reaching the age of retirement of Alzheimer Scotland with the participation of:
decide to spend the last part of their lives abroad. - Geoff Huggins, Scottish Dementia Strategy (Scotland, UK)
Private international law issues concerning, for example, the - Dorothée Knauf-Hübel, Ministry of Health (Luxembourg)
management or sale of goods belonging to persons with an - Benoît Lavallart, French Alzheimer’s Plan (France)
impairment in their personal faculties are arising with ever greater - Jürgen Scheftlein, European Commission
frequency. Where adults themselves have organised in advance - Päivi Voutiläinen, Ministry of Health and Social Welfare (Finland)
their protection for the time when they will not be in a position to
look after their own interests, such as appointing a representative, PL3.1 People with dementia as advocates for change
it is important that such arrangements will be respected abroad. Rohra Helga
Questions arise such as which law applies and who may represent
the adult, and with what powers. In these circumstances, it is With the start of the European Working Group of People with
important to have clear rules concerning the authorities which are Dementia (EWGPWD) under the umbrella of Alzheimer Europe, the
competent to take any necessary measures to assist or protect the foundation was laid for a unique way in dementia activities. People
person or property of the adult. from all over Europe - eleven countries - diagnosed with different
The “Hague Convention of 13 January 2000” on the International forms of dementia are actively campaigning and raising awareness.
Protection of Adults addresses many of these issues by providing Their work as an impact on national dementia strategies as well as
rules on jurisdiction, applicable law and international recognition on their own lifes in dealing with this DISabilitiy.
and enforcement of protective measures. The Convention also As the chair of this group, Helga Rohra will highlight the different
establishes a mechanism for co-operation between the authorities contributions made by the EWGPWD since its creation in 2012.
of Contracting States. The fi nal message is evident: a good and active life with dementia
The Convention furthers some important objectives of the “United is possible.
Nations Convention of 13 December 2006 on the Rights of Persons with
Disabilities” (New York), which entered into force on 3 May 2008. PL3.2. Developing an integrated health and social care model of
In particular, the Hague 2000 Convention supports, in cross-border support for people with dementia
circumstances, the rights enshrined in Articles 3 (re: autonomy), Dalrymple Amy
twelve (Equal recognition before the law), 13 (Access to justice),
18 (Liberty of movement and nationality), 25 (Health) and 32 At a time of demographic change and increasing dementia
(International co-operation) of the UN 2006 Convention. prevalence, it is essential to build the resilience of carers and people
with dementia so that they can continue to live in their communities
PL2. Round table discussion on dementia strategies and policies for as long as possible.
Huggins Geoff, Knauf-Hübel Dorothée, Lavallart Benoit, Alzheimer Scotland’s “Eight Pillars” model of community support
Scheftlein Jürgen, Simmons Henry, Voutiläinen Päivi for people living with dementia sets out an integrated and
comprehensive approach to achieving this. Effectively tackling the
In its 2006 Paris Declaration, Alzheimer Europe and its national symptoms and consequences of dementia requires a coordinated
member organisations called upon the European institutions and range of health and social care interventions. The Eight Pillars model
national governments to recognize Alzheimer’s disease as a major of Community Support for people living with Dementia tackles the
public health challenge and to develop dementia strategies on a full range of factors that infl uence the experience of the illness.
European and national level. The development of this model necessarily took an approach
Since the adoption of the Paris Declaration, Alzheimer plans or that centered around the person with dementia. It takes a bio-
dementia strategies have been developed in Belgium, Denmark, psychosocial approach to understanding the subjective experience
Finland, France, Luxembourg, the Netherlands, Norway, Sweden of the illness leading to appropriately targeted interventions.
and the four countries of the United Kingdom (England, Northern The model is currently being tested in fi ve areas of Scotland. Each
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Abstract Book / Plenary Sessions
test sites is being managed by a partnership between the relevant local initiatives provides information on how Living well in the
health board and local authority, and involving Alzheimer Scotland. community projects must be implemented to ensure they achieve
This presentation will begin by describing the drivers behind the their goals. From the synthesis of the different practices some themes
creation of the Eight Pillars model, including: emerge, namely: Break the taboo; Raise awareness; Develop inclusive
- Ensuring the rights of people living with dementia, including services/facilities; Train staff; Promote intergenerational contacts;
being respected as an individual within their community Organize joint activities; Provide meeting places; Support (informal)
- Promoting the best possible quality of life for people living with care; Guarantee safety and empower people with dementia.
dementia Through its work, EFID will add to knowledge while identifying
- Using combined resources effectively to deliver the best possible synergies between local and regional activities, learning
care and support. about successful processes and discussing ways to transfer
It will then go on to describe the signifi cance of each of the model’s practice effectively.
“pillars”, before looking at the early lessons about the model that Living well with dementia in the community can be considered as
are beginning to emerge from the test sites. The test is still in early the fi rst step towards implementing a dementia friendly society.
stages, so current learning is focused on what is required to begin to
implement the changes required to deliver support using the Eight PL3.4. Dignity and the role of stigma in dementia
Pillars model. Vernooij-Dassen Myrra
The conclusion will outline what Alzheimer Scotland’s future aims
are for the development and implementation of the Eight Pillars Stigma causes an individual to be perceived by others in an
model and its application in creating a system of integrated and undesirable, rejected stereotype rather than an accepted normal
coordinated high quality support and care, centered on the rights one. The stigma attached to dementia reduces the person with
and wishes of people living with dementia – and why these aims are dementia to a person who is unable to maintain social relationships.
important in a context of involving people with dementia. This labeling ignores the capacities of the person and is a serious
threat to their feelings of dignity.
PL3.3. Living well with dementia in the community: new Dignity is a basic and universal need of human beings, continuing
approaches, new projects identifi ed by the European after being diagnosed with dementia. In dementia care bio-medical
Foundations Initiative on Dementia and psychosocial factors are considered to infl uence the dementia
Guisset-Martinez Marie-Jo process and quality of life. However, societal factors such as
stigmatization that threaten dignity can also negatively infl uence
EFID’s mission is to improve the lives of people with dementia quality of life. Thus societal discrediting adds to the hardship of
by enabling a dementia-friendly and inclusive environment in persons with dementia.
communities across Europe. To live well with dementia, communities Dignity is a key feature in dementia care. Loss of dignity causes
must accept and support people, and facilitate the expression of suffering, but maintaining dignity considerably contributes to a
their remaining abilities. This raises enormous challenges for our better quality of life. And dignity can be restored. To start with, stop
ageing societies. EFID has taken up two activity areas. The fi rst one offending people with dementia. Examples of offending people with
is: Communicating differently about dementia and involves editing dementia are ignoring or discussing their need for toileting and
a leafl et on how to communicate about dementia based on the denying their presence by talking about the person with dementia
different perceptions of the disease across Europe for policymakers, rather than talking with him. Addressing dignity is neither costly nor
media and other stakeholders at national and European levels. time consuming and can make the difference.
The second activity issue is about the social inclusion of people De-stigmatising dementia can be done by acknowledging the
with dementia in the community. With the “Living well with capacities of the person with dementia to have pleasure and to give
Dementia in the Community” 2012 and 2014 calls for proposals, EFID pleasure, and by improving and maintaining their capacities. This
partners have rewarded twenty European local projects promoting allows the person with dementia to reciprocate and to contribute. In
the integration and support of people with dementia in the local addition, respecting and actively enabling their needs for autonomy
community. to maintain valued relationships and meaningful activities is
In the last few decades, people with dementia have been seen from crucial. By acknowledging the capacity of the person with dementia
the perspective of the “medical model” which reduces their identity to contribute to family and society (REciprocity) and respecting and
to symptoms. Over the past ten years, the “life model” has proved enabling needs for Autonomy and self-maintenance, DIgnity can be
that another approach is possible and relevant. Some barriers have enhanced (READI).
been broken by giving a voice to people with dementia. The EFID Until recently, dignity has had scant attention. The INTERDEM
action falls into this new paradigm on promoting social inclusion. manifesto has placed dignity on the agenda and there is
We then consider the different types of actions implemented by the growing interest in research. For example the Joint Program
EFID awardees in several European countries. The analysis of these Neurodegenerative Diseases included dignity as an important topic,
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24th Alzheimer Europe Conference
Abstract Book / Plenary Sessions
there is a US campaign to preserve dignity in dementia and this very is a lack of comprehensive guidelines for the many people with
Alzheimer Europe conference has dignity as central theme. Dignity dementia who live at home and experience continence problems.
is acknowledged as a powerful means of improving the quality of Methods: An approach based on expert consensus and wider
persons with dementia. consultation was adopted for the development of guidelines on
improving continence care for people with dementia living at home.
PL4.1. Practice innovation and policy development The experts involved in the development of the guidelines had
Tolson Debbie experience and expertise in the fi elds of dementia, continence care,
general practice, policy development, nursing, psychology and as
There is no doubt that our collective international goal is to provide the informal carers and people with dementia.
best possible support to individuals with dementia and their families. Results: The continence care of people with dementia living at home
What we can achieve within family caring, or within health and social should be understood in the more global context of the long-term
care provision varies in accordance with our dementia capabilities care of people with complex care needs. This requires a collaborative
and capacities, policy commitments and available resource. approach involving social and healthcare professionals in co-
Innovation within dementia practice implies introducing something operation with people with dementia and, for those who do not live
new that makes a positive contribution, often as a result of new alone, their informal carers. We emphasize the need to consider
knowledge. For many practitioners this is about translating evidence continence care of people with dementia living at home as the point at
into practice, for example guideline implementation. Tools such as which factors related to age, dementia and continence intersect. The
clinical guidelines privilege certain types of knowledge based upon guidelines also explore the experience and challenges faced by people
an evidence hierarchy. In contrast within family caring innovation with dementia and their carers and include statements by people
might involve trial and error to discover new approaches based on with dementia and their carers, which highlight what representatives
preferences, or perhaps trying something that has worked well for from those groups consider important in relation to continence
another carer. These examples illustrate that we draw on different care and in the wider context of their rights as equal and valued
forms of knowledge in different caring situations. citizens. The actual guidelines are organised into three main sections
New information however simply raises our awareness of covering detection, continence assessment and the management of
alternatives, it may promote a predisposition to change but often continence problems. In this presentation, a broad overview of the
there are stronger infl uences that shape what we do. In other words guidelines and background information will be provided.
just knowing that there is a better way to do something does not
guarantee that we adopt it, or sustain it within our family caring or PL4.3. Improving care in acute hospitals
professional practices or embrace it within our policy developments. Masters Hugh
Our decision making, judgments and actions in the moment of
care, and indeed some of our policy responses involve a multiplex Improving acute care was one of two key change areas in Scotland’s
of considerations and infl uences that are not necessarily as rational fi rst National Dementia Strategy published in 2010. Scotland’s
as we may like to believe. second National Dementia Strategy launched in 2013 reaffi rmed
There is no doubt that learning and information access plays a crucial a commitment to ensure that, when admission to hospital is
role in practice change and innovation, but there is accumulating unavoidable for people with dementia, the care experienced, on
evidence suggesting that education and information per se are every occasion, is safe, effective, dignifi ed and person-centred.
insuffi cient triggers for embedding change. For practitioners and Using international, UK and Scottish evidence, the impact and costs
family carers additional elements to be considered include: of care for people with dementia at an individual, and at a whole
beliefs about the evidence/information system level in hospitals, will be explored. At a hospital level, this
beliefs about the consequences and benefi ts of the new approach will include patterns of admission, lengths of stay, and associated
feasibility of the innovation in the particular caring situation. costs of care.
Drawing on recent initiatives and applied research this talk will This presentation will then outline the range of approaches that are
explore these factors and the conditions necessary for practice being taken in Scotland to improve the outcomes for people with
innovation and impactful policy development. dementia including the development and implementation of the
national ten Dementia Care Actions in Hospital, which have been
PL4.2. Improving continence care for people with dementia agreed as the core actions necessary to drive improvements. The
living at home impact that these actions are having will be highlighted. Using real
Gove Dianne examples the presentation will show how effective partnerships
between people with dementia and families, professionals, the
Background: Whilst guidelines for dementia care and for continence organisations they work for, and policy makers have been crucial
care exist, and there are some guidelines for the continence care in achieving improvements in care. The role of formal scrutiny and
of people with dementia in residential or nursing settings, there inspection in driving improvements will also be discussed.
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Dignity and autonomy in dementia / Glasgow 2014
Abstract Book / Alzheimer Scotland Sessions
Importantly, the presentation will conclude by discussing the Alzheimer Scotland Sessions
importance of understanding, infl uencing and changing the
way that a large workforce across a wide range of professions, AS1.1. Th e importance of systemic change
approaches and views their work when caring for with people living Simmons Henry
with dementia in acute hospital settings.
Alzheimer Scotland has a long term aim to ensure that people living
PL4.4. Patterns of transition from home care towards with dementia are able to be supported to have the best possible
institutional dementia care: Findings of the quality of life at all stages of their journey with the condition. This
RightTimePlaceCare project session provides an overview of Alzheimer Scotland’s major work in
Saks Kai, Challis David, Hamers Jan Ph, Hallberg Ingalill R, this area, including our focus on systemic change, the “Five Pillars”
Sauerland Dirk, Zabalegui Adelaida, Soto Maria E, Leino-Kilpi model of post diagnostic support and the “Eight Pillars” model of
Helena, Meyer Gabriele community support for people with dementia.
European governments aim to enhance and expand home care This presentation will explore the importance of changing public
resources to enable people with dementia (PwD) to live at home as policy and re-forming health and social care delivery systems and
long as possible. Nevertheless, the majority of PwD will require care structures. The presentation will argue that systemic change is
home placement at some point of the course of the disease. Rates necessary to deliver improvements of signifi cance that will have
of institutionalization and time to admission to a care home of the impact that we seek to improve the lives of people living
PwD may vary substantially among countries. In making decisions with dementia.
about most appropriate care settings for PwD, professionals and
other decision makers have to consider many factors. These include AS1.2. Post Diagnostic Support: the 5 Pillar model of good practice
the preferences and quality of life of the PwD and their informal Fearnley Kate
caregivers, quality of care, safety, service availability and costs as
well as cultural traditions and norms. Alzheimer Scotland has a long term aim to ensure that people living
The European project “RightTimePlaceCare” (RTPC; FP7- with dementia are able to be supported to have the best possible
Health-F3-2010-242153) was designed to contribute to improved quality of life at all stages of their journey with the condition. This
dementia care for European citizens, with a particular focus on session provides an overview of Alzheimer Scotland’s major work in
the development of best practice strategies for the transition from this area, including our focus on systemic change, the “Five Pillars”
home care to institutional long-term care facilities. The project model of post diagnostic support and the “Eight Pillars” model of
combines recent insights from scientifi c literature, primary data community support for people with dementia.
collection, cost-analyses, and information on health care structures Alzheimer Scotland’s ground breaking “Five Pillar” model of post
and patterns of communication between professionals and others diagnostic support for people with dementia has been adopted
from the perspective of eight European countries: Estonia, Finland, by the Scottish Government to describe what should be delivered
France, Germany, the Netherlands, Spain, Sweden and the UK. Data as part of its world-leading guarantee of twelve months post
were collected between June 2010 and January 2012. Interviews using diagnostic support for everyone diagnosed with dementia since
structured questionnaires were conducted with 2014 PwD, 65 years April 2013. This presentation will provide the background to this
or older, in two care settings: model and describe the impact that its delivery is having on the lives
1. Either recently admitted to a care home (1–3 months ago; n=791) of people with dementia and the people around them.
2. Living in the community in receipt of home care but deemed
at risk of admission to a care home within the following six AS1.3. Five Pillars to Eight Pillars: connecting the models,
months (n=1223). creating a continuum
Recommendations for best practice were based on a review of Pearson Jim
published literature and a “balance of care” study combining
different sets of empirical data. Main results will be presented at Alzheimer Scotland has a long term aim to ensure that people living
the conference. with dementia are able to be supported to have the best possible
quality of life at all stages of their journey with the condition. This
session provides an overview of Alzheimer Scotland’s major work in
this area, including our focus on systemic change, the “Five Pillars”
model of post diagnostic support, the “Eight Pillars” model of
community support for people with dementia.
Alzheimer Scotland’s ground breaking “Five Pillar” model of post
diagnostic support for people with dementia has been adopted
by the Scottish Government to describe what should be delivered
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24th Alzheimer Europe Conference
Abstract Book / Alzheimer Scotland Sessions
as part of its world-leading guarantee of twelve months post AS2.2 Allied Health Professionals’ role in supporting people
diagnostic support for everyone diagnosed with dementia since with dementia
April 2013. Hunter Elaine
The “8 Pillars” model of community care takes a holistic approach
to the support needs of people in the moderate stages of dementia Holistic, person-centred support and a high quality of life for people
to enable them to live in the community with a higher quality of with dementia and their families require:
life, for longer. - Skilled professionals
This presentation will demonstrate how the two models of care - Recognition of and response to the individual needs of people
connect to provide a continuous system of support at a level that is with dementia and their families and carers
what is required at each stage of a person’s journey with dementia, - A wider awareness and de-stigmatisation of agenda to enable
supporting people with dementia and their families to achieve the with dementia to go about their daily lives.
best possible quality of life. In Scotland the Allied Health Professional community is made up
of people working in ten different professions: Arts Therapists,
AS1.4. Principles and development of the Eight Pillars model, Dietitians, Occupational Therapists, Orthoptists, Paramedics,
and next steps Prothetists and Orthotists, Physiotherapists, Radiographers, and
Kinnaird Lindsay Speech and Language Therapists.
A holistic, person centred approach to supporting people with
Alzheimer Scotland has a long term aim to ensure that people living dementia requires partnership between a multi-disciplinary
with dementia are able to be supported to have the best possible professional team. Allied Health Professionals are key members of
quality of life at all stages of their journey with the condition. This this team and play an important role at every stage of someone’s
session provides an overview of Alzheimer Scotland’s major work in dementia journey, supporting them to live as independently as
this area, including our focus on systemic change, the “Five Pillars” possible and to achieve and maintain the best possible quality of life.
model of post diagnostic support, the “Eight Pillars” model of This presentation will describe the impact that Allied Health
community support for people with dementia. Professionals can have, and demonstrate why it is important that
The “Eight Pillars” model of community care takes a holistic they are recognized as key team members at every stage - and at
approach to the support needs of people in the moderate stages every level, from the personal, through the operational, to the policy
of dementia to enable them to live in the community with a higher and strategic stage.
quality of life, for longer.
This presentation will describe the approach that was used to AS2.3. Th e importance of Dementia Friendly Communities
develop the Eight Pillars model and how this approach resulted in Crockett Arlene And Shafi i Sandra
the fi nal model. It will conclude with an introduction to Alzheimer
Scotland’s next policy research project. Holistic, person-centred support and a high quality of life for people
with dementia and their families require:
AS2.1. Carer support: why it is needed and what it should look like - Skilled professionals
Pascoe Ann - Recognition of and response to the individual needs of people
with dementia and their families and carers
Holistic, person-centred support and a high quality of life for people - A wider awareness and de-stigmatisation of agenda to enable
with dementia and their families require: with dementia to go about their daily lives.
- Skilled professionals Arlene Crockett and Sandra Shafi i are part of the partnership team
- Recognition of and response to the individual needs of people behind one of Scotland’s most successful and long established
with dementia and their families and carers Dementia Friendly Communities initiatives in Motherwell,
- A wider awareness and de-stigmatisation of agenda to enable Lanarkshire, and winner of an EU wide EFID award in 2014.
with dementia to go about their daily lives. This presentation will describe the importance of a supportive
This presentation will be made by Ann Pascoe, a carer and a member community to the wellbeing of people with dementia and those
of Alzheimer Scotland’s National Dementia Carers Action Network. around them.
Ann will use her experience as a carer and as a carer activist to This presentation will include the launch of the report of the
provide an illustration not only of why care and support systems for Motherwell initiative, focusing on the learning that others can take
people with dementia should also support carers, but also what that away and use to develop their own dementia friendly communities.
carer support can look like and how it can best be done. This will be attendees’ fi rst chance to access this key publication,
which charts the journey of this initiative from inception to its
present success.
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Dignity and autonomy in dementia / Glasgow 2014
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AS2.4. Transforming acute care: the role of the Alzheimer Scotland champion about why the role is important and the impact that it has
Mcalistair Janice And Haining Gladys had on the experiences of people with dementia and their families.
Holistic, person-centred support and a high quality of life for people AS3.1. Background to the Scottish Dementia Strategy: the
with dementia and their families require: Charter of Rights
- Skilled professionals Pearson Jim
- Recognition of and response to the individual needs of people
with dementia and their families and carers Scotland’s fi rst National Dementia Strategy was launched in 2010
- A wider awareness and de-stigmatisation of agenda to enable and ran for three years. In 2013, the second National Dementia
with dementia to go about their daily lives. Strategy was launched and its 17 commitments are in process
In preparation for Scotland’s fi rst National Dementia Strategy, of being implemented by a range of organisations. This session
launched in 2010, a series of dialogue events was held across recognizes that successful implementation of a national dementia
Scotland, hosted by Alzheimer Scotland in partnership with the strategy requires partnership between many organisations and
Scottish Government. These gave people with dementia, carers, and actors to ensure that it has a real impact on the lives of people living
other stakeholders the opportunity to identify what should be the with dementia.
priorities for action in that fi rst dementia strategy. Alongside issues This presentation will describe the rights-based approach that
around support after diagnosis, the clear steer from these events has been taken in Scotland to dementia policy in general and the
was that a transformation was required in the experiences of people National Dementia Strategy in particular.
with dementia in acute hospital care. The presentation will begin by looking at the
The four years since then have seen a vast amount of work across Charter of Rights, which is available to download at
the country to engender change in our hospitals to improve http://www.alzscot.org/assets/0000/2678/Charter_of_Rights.pdf .
the experiences of people with dementia and their families. The It will then demonstrate why a rights based approach is necessary
Alzheimer Scotland nurses are the key drivers of these changes. This and how this approach has shaped both the process of strategy
presentation is an opportunity to hear from two senior, experienced development, the content of the strategy itself, its implementation
dementia nurse consultants about the work they do, the impact of and the way that we will decide how successful the strategy has been.
their role and the changes taking place in acute hospital care.
AS3.2. Why have a Dementia Strategy: what it does
AS2.5. Improving dementia awareness in care settings: being a Huggins Geoff
Dementia Champion
Kellett Rebecca Scotland’s fi rst National Dementia Strategy was launched in 2010
and ran for three years. In 2013, the second National Dementia
Holistic, person-centred support and a high quality of life for people Strategy was launched and its 17 commitments are in process
with dementia and their families require: of being implemented by a range of organisations. This session
- Skilled professionals recognizes that successful implementation of a national dementia
- Recognition of and response to the individual needs of people strategy requires partnership between many organisations and
with dementia and their families and carers actors to ensure that it has a real impact on the lives of people living
- A wider awareness and de-stigmatisation of agenda to enable with dementia.
with dementia to go about their daily lives. Geoff is Acting Director of Health and Social Care Integration at
In preparation for Scotland’s fi rst National Dementia Strategy, the Scottish Government. He has responsibility for major public
launched in 2010, a series of dialogue events was held across service reform programs to integrate health and social care in
Scotland, hosted by Alzheimer Scotland in partnership with the Scotland, to modernize primary care services and to improve
Scottish Government. These gave people with dementia, carers, and mental health services, including dementia. He is a member of
other stakeholders the opportunity to identify what should be the the Health and Social Care Management Board. Previously he was
priorities for action in that fi rst dementia strategy. Alongside issues Head of the Mental Health and Protection of Rights Division and
around support after diagnosis, the clear steer from these events led work to develop Scotland’s fi rst two dementia strategies and on
was that a transformation was required in the experiences of people improving diagnosis rate and post diagnostic support.
with dementia in acute hospital care. Geoff’s presentation will focus on the impact of a national dementia
Dementia Champions are members of a range of professions who strategy, and what can be achieved by pursuing policy and system
are trained to have a greater awareness and knowledge of dementia, change through this strategic approach. He will us Scotland’s
and to “champion” greater dementia awareness, knowledge and current National Dementia Strategy as an example of a rights-
responsiveness among their professional colleagues in acute based, practical approach to achieving transformational change for
care. This presentation is an opportunity to hear from a dementia people with dementia and their families and carers.
9
24th Alzheimer Europe Conference
Abstract Book / Alzheimer Scotland Sessions
AS3.3. Acute Care and the 10 Point Action Plan skills all health and social services staff should aspire to achieve in
Masters Hugh relation to the role they play in supporting people with a diagnosis
of dementia, and their families, and carers.
Scotland’s fi rst National Dementia Strategy was launched in 2010 The development and implementation of the Promoting Excellence
and ran for three years. In 2013, the second National Dementia Framework has been uniquely innovative in its approach to
Strategy was launched and its 17 commitments are in process partnership and involvement. The two statutory bodies worked
of being implemented by a range of organisations. This session closely – and continue to do so – with Alzheimer Scotland and with
recognizes that successful implementation of a national dementia people with dementia who are members of the Scottish Dementia
strategy requires partnership between many organisations and Working Group, in the development and implementation of the
actors to ensure that it has a real impact on the lives of people living framework. The Promoting Excellence Framework is an excellent
with dementia. example of the benefi ts of successful partnership working.
Transforming experiences that people living with dementia have of This presentation will describe why this partnership approach was
acute care settings is a key element of Scotland’s National Dementia taken to this program, what impact it has had and continues to
Strategy. This commitment involves infl uencing and changing have, and how partnership is developing as increasing numbers
the way that a large workforce across a wide range of professions, of people working with people with dementia and their families
approach their work with people living with dementia. are benefi t from training to enhance their knowledge and skills
Partnership between professionals, the organisations they work for, according to the framework.
and policy makers is crucial to achieving the required outcomes.
Hugh Masters will describe why this element of the National AS4.1. History of the Scottish Dementia Working Group
Dementia Strategy is key to achieving it broader aims. He will go on SDWG members
to outline the approach that is being taken to improving acute care
experiences, including the ten Dementia Care Actions in Hospital The Scottish Dementia Working Group was established in 2002. The
that have been agreed as necessary to make change happen – and Scottish Dementia Working Group (SDWG) is the independent voice
will then discuss the impact that these actions are having. of people with dementia within Alzheimer Scotland. It is funded
After training as a mental health nurse, Hugh worked in a variety by Alzheimer Scotland and the Scottish Government. Membership
of practice settings, before moving to Edinburgh Napier University is open to people with dementia. The purpose of the Working Group
as a senior lecturer. In 2009, he took up a post in the Scottish is to campaign to improve services for people with dementia and to
Government as Nursing Offi cer for Mental Health and Learning improve attitudes towards people with dementia.
Disabilities and in March 2012 moved to his present post in the SDWG is one of the longest established groups of its kind in the
Scottish Government. He is currently focused on assuring the world, providing a direct voice for people with dementia and a
care of older people in hospitals and the implementation of the forum for members to work on the issues that affect their lives.
Standards of Care for Dementia in hospital settings. This session will provide attendees with the background to the
SDWG, and explore the impact that it has had, and what has made
AS3.4. Successful partnership working: creating and delivering it successful, as well as looking to what might come in the future.
the Promoting Excellence Framework This presentation by members of the group will describe the history
Forrest Susanne of the group, covering the background to the group’s establishment
and how it has developed and evolved into the well-known and
Scotland’s fi rst National Dementia Strategy was launched in 2010 respected group it is today.
and ran for three years. In 2013, the second National Dementia
Strategy was launched and its 17 commitments are in process AS4.2. Scottish Dementia Working Group input into the National
of being implemented by a range of organisations. This session Dementia Strategy
recognizes that successful implementation of a national dementia Berry David
strategy requires partnership between many organisations and
actors to ensure that it has a real impact on the lives of people living The Scottish Dementia Working Group was established in 2002. The
with dementia. Scottish Dementia Working Group (SDWG) is the independent voice
NHS Education for Scotland ( NES) and the Scottish Social Services of people with dementia within Alzheimer Scotland. It is funded
Council ( SSSC) developed Promoting Excellence: A framework for by Alzheimer Scotland and the Scottish Government. Membership
health and social services staff working with people with dementia, is open to people with dementia. The purpose of the Working Group
their families and carers to support delivery of the aspirations and is to campaign to improve services for people with dementia and to
change actions outlined in the fi rst Scottish National Dementia improve attitudes towards people with dementia.
Strategy. The framework was launched in 2011.The NES/SSSC SDWG is one of the longest established groups of its kind in the
Promoting Excellence framework details the knowledge and world, providing a direct voice for people with dementia and a
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