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Governing dementia

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Paris declaration on the political priorities of the European Alzheimer movement ... ( Westerhof and Tulle 2007: 238) Finally and back to the beginning ... – PowerPoint PPT presentation

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Title: Governing dementia


1
Governing dementia
  • Ursula Naue
  • Life Science Governance Research Platform
  • Department of Political Science
  • University of Vienna
  • Conference/workshop
  • Doing research together
  • Different ways to identify human potentials and
    needs
  • Paris, Auditorium Hôtel de Ville
  • February 2, 2008

2
Paris declaration on the political priorities of
the European Alzheimer movement 2006, Alzheimer
Europe (1)
  • Now, 5.8 million people live with a form of
    dementia in the European Union alone, but the
    real number of people affected is of course
    significantly higher due to the impact the
    disease has on partners, carers and family
    members.


3
Paris declaration on the political priorities of
the European Alzheimer movement 2006, Alzheimer
Europe (2)
  • ...recognise Alzheimer's disease as a major
    public health challenge and to develop European,
    International and national action programmes
  • support awareness campaigns


4
Paris declaration on the political priorities of
the European Alzheimer movement 2006, Alzheimer
Europe (3)
  • foster pan-European research into the causes,
    prevention and treatment
  • increase the funding


5
Short overview on the ongoing socio-political and
medical debate about dementia and dementia
research
  • Medical debate
  • ...understandings of what constitutes the disease
    have changed significantly
  • ...dementia is a contested and not an undisputed
    clinical entity with a clear definition


6
Short overview on the ongoing socio-political and
medical debate about dementia and dementia
research
  • Socio-political debate
  • ...global threat, epidemic, threatening the
    future of our society
  • ...cost-intensive
  • ...window of opportunity still open?


7
Dementia A disease or normal ageing?
  • Dementia is not perceived as a normal part of the
    ageing process, but as an age-related disease
  • Age and ageing per se are increasingly viewed
    from a medicalising point of view
  • Therefore, great scientific efforts are made to
    develop and enhance diagnosis, cure and treatment


8
Dementia and the risk factor age (1)
  • Persons with dementia Perceived as a peril for
    their environment on an individual level and the
    increasingly growing group of persons with
    dementia worldwide seems to threaten society,
    economy and politics at a collective level


9
Dementia and the risk factor age (2)
  • How to finance social entitlement programmes,
    service and care provisions, insurances and the
    health care system in whole, how to cope with
    changing family structures, functions and values?


10
Globalising dementia From individual to
collective concerns/
  • important step towards understanding dementia as
    a socio-political challenge
  • shift from understanding dementia as an
    individual/bodily medical problem to a global
    problem that affects and will affect large parts
    of the worldwide population
  • increasingly medicalised viewpoint on people
    with dementia


11
New focal points in dementia research (1)
  • ...so far, the hopes in genomics research with
    regard to certain types of dementia remains
    unfulfilled
  • ...anyway, genomics research has a significant
    effect on health care strategies and policies


12
New focal points in dementia research (2)
  • ...one of the unintended side-effects of this
    development is that this has an impact on the
    general understanding and the management of
    dementia


13
Changing objectives and practices in the field of
managing and governing dementia (1)
  • ...new policies for being able to cope with new
    demographic structures
  • ...nowadays, the focus seems to shift from the
    genes again to life-course questions with regard
    to dementia


14
Changing objectives and practices in the field of
managing and governing dementia (2)
  • ...this implies that care settings gain anew
    importance (person-centred)
  • ...tensions between focussing on the subject
    (people with dementia) or/and evacuating the
    subject (research)


15
Changing objectives and practices in the field of
managing and governing dementia (3)
  • ...personhood/self of people with dementia
  • ...quality of life
  • ...local/regional/transnational/global levels of
    managing dementia


16
Exclusion or inclusion of people with dementia?
Vienna International Plan of Action on Aging,
1982, UN General Assembly -
  • Recommendation 2
  •  The care of elderly persons should go beyond
    disease orientation and should involve their
    total well-being, taking into account the
    interdependence of the physical, mental, social,
    spiritual and environmental factors. ... enabling
    the elderly to lead independent lives in their
    own family and community for as long as possible
    instead of being excluded and cut off from all
    activities of society.


17
The project EuroCoDe European Collaboration
on dementia, leader organisation Alzheimer
Europe (1)
  • Aim
  • To develop a European network of all the players
    active in the area of dementia (dialogue,
    collaboration)


18
The project EuroCoDe European Collaboration
on dementia, leader organisation Alzheimer
Europe (2)
  • Developing
  • consensual prevalence rates
  • guidelines on diagnosis and treatment
  • guidelines on non-pharmacological interventions
  • risk factors and risk reduction and prevention
    strategies
  • socio-economic cost of Alzheimers disease
  • inventory of social support systems


19
Defining adequate research on dementia What
is this or what could it be?
  • Mandatory when trying to develop person-centred
    research foci
  • Involvement of different actor groups apart from
    researchers and policymakers, such as affected
    persons, their relatives, caregivers and patient
    organisations
  • Focus on diverse practical expertise and
    perspectives


20
Empowering research on dementia Substantial
contribution for identifying needs and objectives
(1)
  • ...empowerment of affected persons, relatives,
    caregivers, patient organisations
  • ...shift towards a research focus and practice
    which does not incapacitate people with dementia


21
Empowering research on dementia Substantial
contribution for identifying needs and objectives
(2)
  • ...referring to changing family and societal
    structures
  • ...participation of affected persons in
    agenda-setting, implementation and findings


22
Governing dementia-conference in Vienna, Dec 3-5,
2007 Between present moments and future
policies (1)
  • Inter-, trans- and multidisciplinary approach
    towards dementia


23
Governing dementia-conference in Vienna, Dec 3-5,
2007 Between present moments and future
policies (2)
  • Panels on /
  • Diagnosis/treatment/cure/(pharmaco)genomics
  • Care/patients perspective
  • Dementia in the context of ageing
  • Governing dementia
  • Dementia research and practice Current
    challenges
  • Film Beyond memory


24
How to shape the discussion in the session on
dementia?
  • ...necessity to formulate the relevant topics and
    focus jointly at the beginning of the parallel
    session
  • ...not to pre-structure the agenda-setting
    process in the parallel session on dementia


25
How to shape the discussion in the session on
dementia
  • ...participants of the parallel session on
    dementia presenting their ideas for research
    projects with regard to living a life with
    dementia in current societal structures


26
The aim of the session on dementia Influencing
research and public policy in the interest of
people with dementia
  • Bringing different ideas and perspectives on the
    issue together and formulating a position paper
    which builds the basis for one or several future
    research project proposals informed by
    practitioners and affected persons and their
    expertise within the field of dementia


27
Finally and back to the beginning ...
  • it is more a dis-ease of the mind than a
    disease of the brain (Whitehouse 2006)
  • ...disease is an inherent part of ageing, but
    ageing may or may not itself be a disease.
    (Westerhof and Tulle 2007 238)


28
Finally and back to the beginning ...
  • I have the feeling that I slowly disintegrate
    (quote by my grandmothers sister, 2007) it is
    necessary to reduce these feelings (societal and
    bodily level)


29
Acknowledgment
  • I am very grateful to Anna Durnová for
    translating the English text into French. Also, I
    am grateful to Thilo Kroll for valuable comments.
  • Research on this presentation has been supported
    by the GEN-AU (Genomeresearch in Austria)
    Programme (www.gen-au.at) of the Austrian Federal
    Ministry of Science and Research.

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