İSTANBUL – REGIONAL SYMPOSIUM IN THE MIDDLE

EAST

Ethical Dilemmas and Human Rights of Persons with Dementia

Lilia Mendoza

02.10.05

PWD

SOC

GOV FM

ADI

ALZ ASSO.

PHY RES. HCT

P.I.

NH, DC, RC

Lilia Mendoza

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?

DISCRIMINATION

STIGMA

IGNORANCE

LACK OF INFORMATION

FEAR

CONSPIRACY OF SILENCE

DEMENTIA RECOGNIZED AS

PUBLIC HEALTH CHALLENGE

STIGMA

“NORMAL PART OF AGEING”

IS AD AND OTHER DEMENTIAS A LEGAL

CHALLENGE?

ARE WE REALLY AWARE OF OUR HUMAN

RIGHTS?

LEGAL AND FINANCIAL SITUATION

ETHICAL DILEMMAS

HUMAN RIGHTS

THE RIGHTS OF PERSONS WITH DEMENTIA

ROLE PLAYED BY ALZHEIMER’S ASSOCIATIONS

WHO-OMS

WORLD OF STRUCTURAL

HETEROGENEITY

EVEN IN THE SAME COUNTRY

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

HUMAN NATURE AND

HUMAN BEINGS ARE THE

SAME ALL OVER

THE JOURNEY INTO FORGETFULNESS

ECONOMICAL DEVELOPMENT

RELIGIOUS PATTERNS

TRADITIONS

VALUES

BELIEFS

CONCERNS

COMMON SENSE

PRACTICES

COLLECTIVE RESPONSABILITY

ATTITUDES

LEGAL SYSTEM

HUMAN RIGHTS & ETHICAL DILEMMAS

GOVERNMENT

PERSON WITH DEMENTIA

FAMILY MEMBER

PHYSICIAN, HEALTH CARE TEAM

RESEARCHER

PHARMACEUTICAL INDUSTRY

INSTITUTIONS

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

CHALLENGE TO OVERCOME SOCIAL STIGMAS

INFORMATION

CHANGING ATTITUDES

SOLIDARITY

EMPHATY

PERSONS WITH OR WITHOUT DEMENTIA HAVE EXACTLY THE

SAME RIGHTS

Principles of King’s Fund, Australia, 1986

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

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

VERY IMPORTANT TO RAISE AWARENESS

CREATE COLLECTIVE WISDOM

ENHANCE COMPASSION

GENERATE HOPE

Peter Whitehouse

WHAT ARE THE FIGURES OF DEMENTIA IN

YOUR COUNTRY?

IS VOLUNTARY WORK A

TRADITION IN YOUR CULTURE,

COUNTRY?

% POPULATION COVERED BY

HEALTH & SOCIAL SECURITY SYSTEM

OPPRESSIVE CARE

OVERPROTECTION

HOW DIFFICULT VERSUS EASY IS TO DECIDE FOR

OTHERS

“FAMILIES HAVE BEEN FORCED TO MAKE

DIFFICULT DECISIONS CONCERNING CARE”

Mitsue Nagashima, Japan

WHO IS RESPONSIBLE FOR THE CARE IN YOUR COUNTRY

FAMILY

STATE

NGO’S

RELIGIOUS GROUPS

COMBINATION

ARE THERE RELIGIOUS PATTERNS?

IN THE HOLY QURAN:

SURAH:

XVII, 24,25

XXIX,7

XLVI,14,15,16

OBLIGATIONS TO PARENTS

THERE IS A NEED TO COLLECT SPECIFIC

LOCAL

NATIONAL

REGIONAL

NTERNATIONAL

LEGISLATION ON THE FIELD OF DEMENTIAS

GOVERNMENT

NATIONAL LOCAL

PUBLIC PRIVATE

Denzil Lush, London

ARE THERE SPECIFIC ISSUES IN YOUR

COUNTRY’S LEGISLATION FOR

PERSONS WITH DEMENTIA?

COMPETENCY VERSUS

INCOMPETENCY

GUARDIANSHIP

CURATORSHIP

TUTORSHIP

ADVANCE DIRECTIVES

POWER OF ATTORNEY

LIVINGWILL

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

FAMILY STRUCTURE IS CHANGING ALL OVER THE

WORLD

WHICH MAY AFFECT THE NUMBERS OF AVAILABLE

CARERS

CARERS FROM OTHER COUNTRIES WITH DIFFERENT

LANGUAGES & KNOWLEDGES

SERVICES

AVAILABLE FOR

EVERYBODY

COST

AND

JUSTICE

ARE THERE NON GOVERNMENTAL ORGANIZATIONS

(NGO’S)

TACKLING THE CHALLENGE OF

DEMENTIAS

PWD AT EARLY STAGES

HAVE A VOICE TO EXPRESS HER/HIS

NEEDS & FEELINGS

PARTICIPATE IN THE PROCESS OF

DECISION MAKING FOR FUTURE LIFE

TO KNOW OR NOT THE DIAGNOSIS

IS IT CONSIDERED A RIGHT FOR THE PWD?

IS THE PWD CONSIDERED A PERSON UNTIL

THE END?

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?

WELL TRAINED PHYSICIANS TO MAKE A PROPER

DIAGNOSIS

GERIATRICIANS

NEUROLOGISTS

PSYCHIATRISTS

GENETICISTS

OTHERS

“PARIS 2000

HEALTH PUBLIC INSURANCE SYSTEM

POOR DIAGNOSIS RATE OF 34.8%”

Francoise Forette, France, ADI Kyoto 2004

“PHYSICIANS ARE NOT WELL-TRAINED TO MEET THE SPECIAL

CARE NEEDS OF OLDER PEOPLE”

Robert Butler, USA, ADI Kyoto 2004

IS THE IDEA OF

INSTITUTIONALIZATION

ACCEPTED IN YOUR

CULTURE, COUNTRY?

THE INSTITUTIONS

HAVE A CLEAR PHILOSOPHY OF

CARE?

ARE THERE

ENOUGH

INSTITUTIONS?

WHO PAYS FOR THOSE INSTITUTIONS?

GOVERNMENT

FAMILY

PERSON WITH DEMENTIA

NGO’S

RELIGIOUS GROUPS

ABUSE

MISTREATMENT

VIOLENCE

ARE CONSIDERED A “NORMAL” ASPECT OF THE CULTURE

LIKE TO “EDUCATE” CHILDREN

OR ELDERLY ABUSE

IN MANY COUNTRIES IS COMMON TO

“CONTROL” DIFFICULT BEHAVIORS

WITH THE USE OF RESTRICTIONS:

CHEMICAL

PHYSICAL

PSYCHOLOGICAL

RESPECT

DIGNITY

AUTONOMY

INDEPENDENCE

THE RIGHT TO REASSURANCE

COMPANIONSHIP

COMFORT

STIMULATION (ENVIRONMENT)

PRIVACY

CONFIDENTIALITY

QUALITY OF LIFE

DEATH AND DYING

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

“NOTHING ABOUT US,

WITHOUT US”

ADVOCACY BY PEOPLE WITH DEMENTIA

Christine Bryden, Australia, ADI Kyoto 2004

CAREGIVER

CARER

CAREPARTNER

Paul & Christine Bryden, Australia, ADI Kyoto 2004

“SUPPORT FROM TRANSNATIONAL ACTIONS

AIMED AT COMBATING DISCRIMINATION AGAINST

ELDERLY OR DISABLED PEOPLE”

AlzheimerEurope, Lawnet

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

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

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

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”

“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

ETHICS OF HOPE FOR PWD

ARE A POSSIBILITY OF

QUALITY OF LIFE

“ENDAVOUR CREATES HOPE

AND

HOPE FURTHER ENDAVOUR”

Harry Cayton, UK, ADI Kyoto 2004

HOPE HELPS A PERSON MOBILIZE HIS OR HER OWN RESOURCES TO COPE WITH THE

ILLNESS.