İstanbul – regional symposium in the middle east ethical dilemmas and human rights of persons...
TRANSCRIPT
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İSTANBUL – REGIONAL SYMPOSIUM IN THE MIDDLE
EAST
Ethical Dilemmas and Human Rights of Persons with Dementia
Lilia Mendoza
02.10.05
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PWD
SOC
GOV FM
ADI
ALZ ASSO.
PHY RES. HCT
P.I.
NH, DC, RC
Lilia Mendoza
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WHAT DOES THE LABEL OF DEMENTIA MEAN IN YOUR
SOCIETY?
ACCORDING TO YOUR VALUES AND CULTURAL PERSPECTIVE
WHAT IS THE PICTURE OF DEMENTIA AND OF OLD AGE?
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DISCRIMINATION
STIGMA
IGNORANCE
LACK OF INFORMATION
FEAR
CONSPIRACY OF SILENCE
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DEMENTIA RECOGNIZED AS
PUBLIC HEALTH CHALLENGE
STIGMA
“NORMAL PART OF AGEING”
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IS AD AND OTHER DEMENTIAS A LEGAL
CHALLENGE?
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ARE WE REALLY AWARE OF OUR HUMAN
RIGHTS?
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LEGAL AND FINANCIAL SITUATION
ETHICAL DILEMMAS
HUMAN RIGHTS
THE RIGHTS OF PERSONS WITH DEMENTIA
ROLE PLAYED BY ALZHEIMER’S ASSOCIATIONS
WHO-OMS
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WORLD OF STRUCTURAL
HETEROGENEITY
EVEN IN THE SAME COUNTRY
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TYPES OF SOCIETIES OR COUNTRIES
INDEPENDENT, AUTONOMOUS INDIVIDUALS IN DEVELOPED COUNTRIES: HYPERCOGNITIVE, PRODUCTIVITY, EFFICIENT USE OF TIME AND ENERGY, DO NOT RELY ON OTHERS
DEPENDENT PERSONS ALL THEIR LIFE IN DEVELOPING COUNTRIES
INTERDEPENDENT PERSONS BASED IN A SOLIDARITY SYSTEM, EXCHANGING SERVICES FOR EACH OTHER, OVERPROTECTION OR OPPRESSIVE CARE
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HUMAN NATURE AND
HUMAN BEINGS ARE THE
SAME ALL OVER
THE JOURNEY INTO FORGETFULNESS
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ECONOMICAL DEVELOPMENT
RELIGIOUS PATTERNS
TRADITIONS
VALUES
BELIEFS
CONCERNS
COMMON SENSE
PRACTICES
COLLECTIVE RESPONSABILITY
ATTITUDES
LEGAL SYSTEM
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HUMAN RIGHTS & ETHICAL DILEMMAS
GOVERNMENT
PERSON WITH DEMENTIA
FAMILY MEMBER
PHYSICIAN, HEALTH CARE TEAM
RESEARCHER
PHARMACEUTICAL INDUSTRY
INSTITUTIONS
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SOURCES OF INFORMATION
DAILY EXPERIENCES (TESTIMONIES) FAMILY MEMBERS IN SUPPORT GROPUS OR TRAINING COURSES IN DIFFERENT COUNTRIES
INTERNATIONAL DEBATE: ETHICISTS, PHILOSOPHERS, JURISTS, THEOLOGIANS, ANTHROPOLOGISTS, SOCIOLOGISTS, POLITICIANS, PUBLISHED IN JOURNALS & BOOKS
COMPARISONS BETWEEN COUNTRIES
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CHALLENGE TO OVERCOME SOCIAL STIGMAS
INFORMATION
CHANGING ATTITUDES
SOLIDARITY
EMPHATY
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PERSONS WITH OR WITHOUT DEMENTIA HAVE EXACTLY THE
SAME RIGHTS
Principles of King’s Fund, Australia, 1986
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THE PERSON WITH DEMENTIA IS A HUMAN BEING WHO DESERVES
DIGNITY
PWD HAVE THE SAME PSYCHOSOCIAL NEEDS AS
OTHERS:
STIMULATION, COMPANIONSHIP, TO FEEL SECURE, UNIQUE,
VALUED AND A SENSE OF SELF STEEM
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CENTRAL MORAL TASK OF CHANGING ATTITUDES
IS NOT A QUESTION OF
“THOSE” AND “US”
PROVIDING FORMS OF CARE THAT ATTEND TO THE NONCOGNITIVE
ASPECTS OF THE SELF
Stephen G. Post
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VERY IMPORTANT TO RAISE AWARENESS
CREATE COLLECTIVE WISDOM
ENHANCE COMPASSION
GENERATE HOPE
Peter Whitehouse
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WHAT ARE THE FIGURES OF DEMENTIA IN
YOUR COUNTRY?
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IS VOLUNTARY WORK A
TRADITION IN YOUR CULTURE,
COUNTRY?
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% POPULATION COVERED BY
HEALTH & SOCIAL SECURITY SYSTEM
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OPPRESSIVE CARE
OVERPROTECTION
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HOW DIFFICULT VERSUS EASY IS TO DECIDE FOR
OTHERS
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“FAMILIES HAVE BEEN FORCED TO MAKE
DIFFICULT DECISIONS CONCERNING CARE”
Mitsue Nagashima, Japan
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WHO IS RESPONSIBLE FOR THE CARE IN YOUR COUNTRY
FAMILY
STATE
NGO’S
RELIGIOUS GROUPS
COMBINATION
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ARE THERE RELIGIOUS PATTERNS?
IN THE HOLY QURAN:
SURAH:
XVII, 24,25
XXIX,7
XLVI,14,15,16
OBLIGATIONS TO PARENTS
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THERE IS A NEED TO COLLECT SPECIFIC
LOCAL
NATIONAL
REGIONAL
NTERNATIONAL
LEGISLATION ON THE FIELD OF DEMENTIAS
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GOVERNMENT
NATIONAL LOCAL
PUBLIC PRIVATE
Denzil Lush, London
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ARE THERE SPECIFIC ISSUES IN YOUR
COUNTRY’S LEGISLATION FOR
PERSONS WITH DEMENTIA?
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COMPETENCY VERSUS
INCOMPETENCY
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GUARDIANSHIP
CURATORSHIP
TUTORSHIP
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ADVANCE DIRECTIVES
POWER OF ATTORNEY
LIVINGWILL
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IS THE FAMILY THE ONLY RESOURCE AVAILABLE AND NO
SERVICES?
BASED ON LOYALTY & GRATITUDE
IT SHOULD NOT BE EXHAUSTED
LACK OF SOCIAL, POLITICAL, FINANCIAL SUPPORT
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FAMILY STRUCTURE IS CHANGING ALL OVER THE
WORLD
WHICH MAY AFFECT THE NUMBERS OF AVAILABLE
CARERS
CARERS FROM OTHER COUNTRIES WITH DIFFERENT
LANGUAGES & KNOWLEDGES
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SERVICES
AVAILABLE FOR
EVERYBODY
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COST
AND
JUSTICE
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ARE THERE NON GOVERNMENTAL ORGANIZATIONS
(NGO’S)
TACKLING THE CHALLENGE OF
DEMENTIAS
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PWD AT EARLY STAGES
HAVE A VOICE TO EXPRESS HER/HIS
NEEDS & FEELINGS
PARTICIPATE IN THE PROCESS OF
DECISION MAKING FOR FUTURE LIFE
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TO KNOW OR NOT THE DIAGNOSIS
IS IT CONSIDERED A RIGHT FOR THE PWD?
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IS THE PWD CONSIDERED A PERSON UNTIL
THE END?
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IS IT POSSIBLE IN YOUR CULTURE THAT PEOPLE
OPEN UP AND SPEAK OUT
IN GROUPS?
ARE THERE SELF-HELP GROUPS FOR PWD AND OR FAMILY MEMBERS IN YOUR
COUNTRY?
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WELL TRAINED PHYSICIANS TO MAKE A PROPER
DIAGNOSIS
GERIATRICIANS
NEUROLOGISTS
PSYCHIATRISTS
GENETICISTS
OTHERS
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“PARIS 2000
HEALTH PUBLIC INSURANCE SYSTEM
POOR DIAGNOSIS RATE OF 34.8%”
Francoise Forette, France, ADI Kyoto 2004
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“PHYSICIANS ARE NOT WELL-TRAINED TO MEET THE SPECIAL
CARE NEEDS OF OLDER PEOPLE”
Robert Butler, USA, ADI Kyoto 2004
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IS THE IDEA OF
INSTITUTIONALIZATION
ACCEPTED IN YOUR
CULTURE, COUNTRY?
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THE INSTITUTIONS
HAVE A CLEAR PHILOSOPHY OF
CARE?
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ARE THERE
ENOUGH
INSTITUTIONS?
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WHO PAYS FOR THOSE INSTITUTIONS?
GOVERNMENT
FAMILY
PERSON WITH DEMENTIA
NGO’S
RELIGIOUS GROUPS
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ABUSE
MISTREATMENT
VIOLENCE
ARE CONSIDERED A “NORMAL” ASPECT OF THE CULTURE
LIKE TO “EDUCATE” CHILDREN
OR ELDERLY ABUSE
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IN MANY COUNTRIES IS COMMON TO
“CONTROL” DIFFICULT BEHAVIORS
WITH THE USE OF RESTRICTIONS:
CHEMICAL
PHYSICAL
PSYCHOLOGICAL
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RESPECT
DIGNITY
AUTONOMY
INDEPENDENCE
THE RIGHT TO REASSURANCE
COMPANIONSHIP
COMFORT
STIMULATION (ENVIRONMENT)
PRIVACY
CONFIDENTIALITY
QUALITY OF LIFE
DEATH AND DYING
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ARE THOSE CONCEPTS THE SAME FOR THE
PERSON WITH DEMENTIA
FAMILY MEMBER
THE HEALTH CARE TEAM
RESEARCHER
PHARMACEUTICAL COMPANIES
YOURSELF IF YOU WERE THE PWD
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“NOTHING ABOUT US,
WITHOUT US”
ADVOCACY BY PEOPLE WITH DEMENTIA
Christine Bryden, Australia, ADI Kyoto 2004
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CAREGIVER
CARER
CAREPARTNER
Paul & Christine Bryden, Australia, ADI Kyoto 2004
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“SUPPORT FROM TRANSNATIONAL ACTIONS
AIMED AT COMBATING DISCRIMINATION AGAINST
ELDERLY OR DISABLED PEOPLE”
AlzheimerEurope, Lawnet
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RESPECT FOR THE DIGNITY OF ALL HUMAN BEINGS
RESPECT FOR THE VALUES AND WISHES OF EACH
PERSON AS
EXPRESSED WHILE HE OR SHE WAS COMPETENT
Stephen G. Post, USA
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MANY THINGS CAN BE DONE EVEN THOUGH A CURE IS NOT POSSIBLE AT
THE MOMENT.
THE RESIDUALS STRENGHTS OF INDIVIDUALS CAN BE THE
FOUNDATION OF ENHANCED QUALITY OF LIFE.
PWD OFTEN RECALL HOW TO PERFORM TASKS FROM EARLIER IN
THEIR LIFES
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HUSSAIN JAFRIE, PAKISTAN, TESTIMONY:
AFTER VISITING MANY DOCTORS ONE WAS ABLE TO DIAGNOSED MY GRANDFATHER WITH ALZHEIMER’S DISEASE, WE HAD NEVER HEARD OF THE DISEASE.
THE DOCTOR TOLD US: THERE IS NO CURE, AND THAT WE WILL HAVE TO TAKE CARE OF HIM LIKE A
CHILD.
THERE CAN NOT BE ANYTHING MORE PAINFUL TO KNOW THAT THE PERSON WHO HAS BEEN YOUR
MENTOR, HAS RAISED YOU AND TAUGHT YOU THE WAYS OF LIFE,
IS NOW DEPENDENT UPON YOU FOR THE REST OF HIS LIFE.
ADI Kyoto 2004
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WE NEED THE “DETERMINATION THAT FUTURE GENERATIONS OF PEOPLE
WITH DEMENTIA AND THEIR CARERS SHOULD NOT BE FACED WITH THE WALLS OF IGNORANCE, LACK OF
SERVICE, POOR STANDARDS, INDIFFERENCE AND STIGMA WHICH MADE IT SO DIFFICULT FOR ANYONE TO GET EFFECTIVE ASSISTANCE 25
YEARS AGO”
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“NEVER GIVE UP HOPE,
I AM STILL SEARCHING FOR A BETTER WAY FOR MY MOTHER TO LIVE OUT HER NATURAL LIFE, TAKING INTO
ACCOUNT HER OWN WISHES.
HOW SHOULD I TAKE CARE OF HER
AND
WHAT IS THE BEST THING FOR HER?”
Kayoko Ueda, Japan, ADI Kyoto 2004
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ETHICS OF HOPE FOR PWD
ARE A POSSIBILITY OF
QUALITY OF LIFE
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“ENDAVOUR CREATES HOPE
AND
HOPE FURTHER ENDAVOUR”
Harry Cayton, UK, ADI Kyoto 2004
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HOPE HELPS A PERSON MOBILIZE HIS OR HER OWN RESOURCES TO COPE WITH THE
ILLNESS.
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