ONE STEP FORWARD IN ROMANIA: NATIONAL DEMENTIA STRATEGY 2014-2020 - Catalina TUDOSE - Alzheimer Europe
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ONE STEP FORWARD IN ROMANIA: NATIONAL DEMENTIA STRATEGY 2014-2020 Catalina TUDOSE President Maria MOGLAN Vice President Romanian Alzheimer Society 24th Alzheimer Europe Conference Glasgow, Scotland, UK 20-24 October 2014
In memoriam Professor FLORIN TUDOSE
Outline
1. Setting the context: Europe, Romania
2. Romanian Alzheimer Society: who we are?
3. Some figures: why we need a plan?
4. First step: Romanian Manifesto
5. The National Dementia Strategy: what could,
should and must be included in the plan
6. Results: what is next?
7. Conclusion: what do we want for Romania?
The context
Romanian Alzheimer Society
• Officially registered on the 26th of February 1992
• Main goal – supporting the patients with dementia and their
families
• Early projects oriented to:
• Identification of the needs of old people with dementia
• Mainly social programs and interventions in the first years of
activity
• NOW: action in 3 directions:
• Recognize Dementia as a National Priority
• Early diagnosis of Dementia has become the main objective -
Memory Centre
• Educational programmes for professionals and for the
general public
Alzheimer Disease – a public health
problem in Romania?
România - 10% are diagnosed and treated
only 25 - 30.000
20% - 30% undiagnosed in European
countries, in România 90%
Besides medical examinations and
assessments and pharmacological
treatment THERE IS NO OTHER CARE
SERVICES IN COMMUNITY
Creșterea proiectată a speranței de viață la vârsta de 65 ani, Creșterea proiectată a speranței de viață la vârsta de 65 ani,
2011-2060-Bărbați - în ani și fracțiuni de an 2011-2060-Femei - în ani și fracțiuni de an
Projected increase in male life expectancy at age 65, Projected increase in female life expectancy at age 65,
2011-2060 - years and tenth 2011-2060 - in years and tenth
(sursa: 2011-Eurostat; 2060-De Beer, 2013)
8
8
7
7
6
6
5
5
4
4
3 3
2 2
1 1
0 0
Norvegia
Polonia
Slovacia
Bulgaria
Lituania
Germania
Danemarca
Estonia
ROMANIA
Ungaria
Franța
Norway
Slovacia
Portugalia
Irlanda
Reg. Unit
Belgia
Letonia
Portugalia
Germania
Estonia
Lituania
Bulgaria
ROMANIA
Ungaria
Suedia
Franța
Italia
Olanda
Spania
Finlanda
Austria
Rep. Cehă
Italia
Belgia
Reg. Unit
Irlanda
Danemarca
Letonia
Spania
Austria
Finlanda
Olanda
Suedia
Rep. Cehă
Poland
Elaveția
Elaveția
10
15
20
25
0
5
Irlanda
Islanda
Slovacia
Cipru
Polonia
ROMANIA
Norvegia
Malta
Rep. Cehă
Olanda
Slovenia
Franța
Ungaria
Reg. Unit
Danemarca
Elveția
Estonia
Belgia
în anul 2011 - în %
Spania
Finlanda
Austria
Lituania
Letonia
countries, 2011 (sursa: Eurostat, 2012)
Bulgaria
Suedia
Portugalia
Grecia
Ponderea populației de 65 ani și peste în țări europene
Percentage of population aged 65 and over in European
Italia
Germania
10
15
20
25
30
35
40
0
5
Islanda
Irlanda
Reg. Unit
Norvegia
Belgia
Danemarca
Suedia
Luxemburg
Franta
Finlanda
Olanda
Cipru
Austria
Elvetia
Estonia
Rep. Ceha
Malta
Lituania
anul 2060 - în %
Grecia
(sursa: Eurostat, 2011)
Spania
European countries, 2060
Slovenia
Portugalia
Ungaria
Bulgaria
Germania
Slovacia
Percentage of population aged 65 years and over in
Polonia
Ponderea populației de 65 ani și peste în țări europene în
ROMANIA
Letonia
Romania. Numărul și ponderea populației de 65 ani și peste în anii 2011-2100
- proiectare cu fertilitate constantă=1,3 copii la o femeie -
Number and share of population aged 65 and over, 2011-2100
Projection-Constant fertility variant=1,3 children p. woman
4500 40.0
4000 35.0
3500
30.0
3000
25.0
As %
2500 As %
Nb. -thou
20.0
2000
15.0
1500
10.0
1000
500 5.0
0 0.0
2010 2015 2020 2025 2030 2035 2040 2045 2050 2055 2060 2065 2070 2075 2080 2085 2090 2095Romanian Alzheimer Society
MANIFESTO
CALL FOR A NATIONAL DEMENTIA STRATEGY FOR
ROMANIA
Alzheimer’s disease and other dementias are a major
national public health and societal challenge
TIME TO ACT NOW !!
Romanian Dementia Strategy that must include :
- the setting up of a National Dementia Regsiter
- a register of social cases
- community assistance provided by qualified and trained staffRomanian Alzheimer
Conferences
• Romanian National Alzheimer Conference 2011
New insights into dementia
Elena Oana
1st MEP signed Alzheimer Europe Alliance Antonescu
• Romanian National Alzheimer Conference 2012 Alzheimer Dementia –
the main public health concern in Romania. National Alzheimer Alliance
3 MEPs signed Alzheimer Europe Alliance
Elena Oana Daciana Octavia Claudiu Cyprian
Antonescu Sârbu Tanasescu
• Romanian National Alzheimer Conference 2013 Dementia between
demographic and economic crisis
4 MEPs
Cristian Silviu Daciana Octavia Elena Oana Claudiu Cyprian
Busoi Sârbu Antonescu TanasescuRomanian Alzheimer Conference
2014
Dementia in Romania- on the
public agenda?
National Dementia Strategy 2014- 2020
Declaration of the Conference
Romanian Dementia Pledge
”Help us make dementia a public health
priority”
Renate WeberThe Key Themes of the National Dementia Strategy Access to health and social care services Promote a multidisciplinary approach Multi-sectorial approach Involving persons with dementia
The main goal
Recognition -dementia and Alzheimer's
disease as a priority for the public health
policy
A decrease of neurodegenerative diseases
incidence
An early detection of cognitive symptoms,
of dementia and Alzheimer's disease
An increased accessibility for patients to
treatment, proper care and rehabilitation
techniques / decrease the negative effects
on their quality of lifeObjectives a)Setting an institutional mechanism Assessment of: Human resources Material resources Budgetary and non- budgetary financial resources Setting of a Register of persons
Objectives b) The importance of Memory Centers Early/ timely diagnosis Differential diagnosis Allows the patient and family to take legal action Allows financial planning of the future Allows the patient to decide the most appropriate care approach Allows the patients to organize their lives knowingly Provides advice and support to families with patients in their care
Objectives c) Development of a network of basic services: Cognitive assessment, diagnosis and treatment Support services for the early stages of the disease Care services in local communities and / or at home - permanent (long-term) and / or temporary Hospitals for terminal care
Objectives d) Public awareness
Objectives e) Promoting national scientific research and participation in European community and international programs: Promoting best practices Improve standard operating procedures Development of epidemiological and clinical databases Further research on the quality of life
Objectives f) De-stigmatization of people with dementia
Coordination and responsibilities Development of medical and social care: Promoting and activating clinical and basic scientific research Allocation of financial, human and material resources Forms of education and/ or training Training, support and monitoring of carers
Coordination and responsibilities
Involvement of local communities
Recognition of associations and
organizations as the main partners for:
Definition of recommendations and best
practices
Presentation of the needs of people with
dementia and their carers needs
Increase of public and professional
awarenessThe Institutional Architecture
An Inter-ministerial
Committee
◦ invested with the
power to decide
◦ the approval of the
Government
◦ included in the
Government program
◦ a Strategy
Subcommittee to
analyze, correlate and
finalize documentsThe Institutional Architecture Working groups consisting of representatives of the organizations and civil associations Working group for elaboration of the primary information necessary for creating the patients Register Working group for drafting the legal framework Working group to assess medical costs
The Institutional Architecture Working group to identify, knowledge and promote best practices on the rights of people with dementia Working group to develop a strategy for public awareness Support groups for healthcare professionals Development - forms of partnership
Commitments and proposals
Creating a system of health and social care for
people with dementia and Alzheimer's disease
Respecting and implementing the
recommendations of the European Alzheimer's
Alliance included in the Paris Declaration (2006),
European Commission Communication on
healthy aging (2007), the European Pact for
Mental Health (2008), European Parliament
Written Declaration on priorities in the fight
against Alzheimer's disease (2009), Resolution
regarding European Initiative to combat
Alzheimer's disease (2011)Commitments and proposals Romania will hold the Presidency of the Council of 2019. Building on the expertise gained, Romanian Alzheimer Society declares its willingness to participate in this national endeavor that respect basic principles underlying this policy, namely: promoting health for elderly in Europe promote early diagnosis fight against stigma, discrimination and limited opportunities for treatment and care to be done until 2020 the latest
Now we are here
Vision:
Dementia- a National Health
Priority (to put Dementia on
national political agenda)
Demand:
National plan to be effective
To have: a platform, a buget, a
structure
The Interministerial Committee
to agree on our Plan
Fallback:
The Interministerial Committee
to agree on 1 – 2 priorities:
- Epidemiological study
- Increasing awarenessConstituents & Allies Constituents: Alzheimer board National Alzheimer Alliance Network with other organisations Allies: Health Care /Medical Professionals Persons with Dementia
What’s next?
Tactics Identify the Interministerial committee people and governamental officials to make a wish list with our priorities (headings) the Interministerial committee to be approved and to start the work to sign a Memorandum of Understanding / Agreement with the frame to produce a paper to get governamental bindings and approval
Tactics
European Projects 1.Translational Research Center in Psychiatry and Neuroscience 2. ELMI 3. DANDEC
Translational Research Center in Psychiatry and Neuroscience
ELMI Project
THANK YOU!
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