A new book: The Law and Ethics of Dementia

Dementia is a topic of enormous human, medical, economic, legal and ethical importance. Its importance grows as more of us live longer. The legal and ethical problems it raises are complex, intertwined and under-discussed. This book brings together contributions from clinicians, lawyers and ethicists, all of them world leaders in the field of dementia and is a comprehensive, scholarly yet accessible library of all the main (and many of the fringe) perspectives. It begins with the medical facts: what is dementia? Who gets it? What are the current and future therapeutic and palliative options? What are the main challenges for medical and nursing care? The story is then taken up by the ethicists, who grapple with questions such as: is it legitimate to lie to dementia patients if that is a kind thing to do? Who is the person whose memory, preferences and personality have all been transformed by their disease? Should any constraints be placed on the sexual activity of patients? Are GPS tracking devices an unpardonable interference with the patient's freedom? These issues, and many more, are then examined through legal lenses. The book closes with accounts from dementia sufferers and their carers. It is the first and only book of its kind, and the authoritative text.
The book is edited by Charles Foster, Jonathan Herring, and Israel (Issi) Doron, and is published by HART Publication at Oxford.
Here is the link to the book:
http://www.hartpub.co.uk/BookDetails.aspx?ISBN=9781849464178

The 1st Report of the Independent Expert on Human Rights of Older Persons

As was already reported, the UN Human Rights Council has nominated on June 2 2014, Ms Rosa Kornfeld-Matte to serve as the Independent Expert on the Enjoyment of all Human Rights by Older Persons.
The Independent Expert submitted its first report, and here is the link to the full text of the report.:
http://www.rightsofolderpeople.org/wp-content/uploads/2014/08/A-HRC-27-46_en-1.pdf

http://www.rightsofolderpeople.org/wp-content/uploads/2014/08/A-HRC-27-46_en-1.pdf

The Report includes background information regarding the foundation of the mandate of the Independent Expert, its scope of operation, the legislative context, and the global context of the human rights of older persons.
As little time has passed by since her nomination, this report is mostly descriptive and does not include any new or novel findings or recommendation.
However, here is the conclusion of this first report, which can indicate the spirit and direction that the IE wishes to pursue:

"The Independent Expert aims to respond to the expectations of numerous individuals and organizations with regard to her work on the human rights of older persons, as outlined by the Human Rights Council in its resolution 24/20. To that end, she looks forward to engaging in constructive and fruitful cooperation with diverse stakeholders in all regions. She emphasizes her desire for constructive engagement with the States Members of the United Nations, and reiterates the importance of an inclusive and all-encompassing approach in the discharge of her mandate. She particularly notes the central role of non-governmental organizations, including in providing her with information and engaging with and assisting her as she fulfils her mandate."

We wish the IE the best success in her work, and we will continue to report on her progress.

The Chicago Declaration on the Rights of Older Persons

Within the framework of  moving forward in establishing a new International Convention on the Rights of Older Persons, the John Marshall School of Law in Chicago, has been involved in a project to produce a declaration that will serve as a basis for discussion on the future of such a convention. Below it the text of the declaration, and here is the link to input comments and feedback:

http://www.jmls.edu/braun/declaration-responses.php

Chicago Declaration on the

Rights of Older Persons

July 11, 2014

Preamble

(a)   Recognizing the wisdom, contributions, and vision derived from the sacrifice and experience of older persons and their positive effect on life and culture around the world; and recognizing that the great increase in life expectancy that has taken place in the past century should not be perceived as a burden for society but as a positive trend;

(b)   Recognizing that older persons are not a homogeneous group of people, but are instead diverse and unique as any segment of society;

(c)    Recognizing that discrimination against any person on the basis of age is a violation of the inherent dignity and worth of the human person, and ageism and the social construction of old age, including bias, stereotypes, prejudices, and stigma of older persons are forms of discrimination that hinder the full realization of their human rights and participation of older persons as equal members of society;

(d)   Concerned about the difficult situation experienced by older persons who may face multiple or aggravated forms of discrimination based on the interaction between their age and other factors such as race, color, gender, sexual orientation, ethnicity, language, religion, political or other opinion, national or social origin, property, birth, disability, or other status;

(e)    Recognizing the importance for older persons of their individual autonomy and independence, including the freedom to make their own choices;  

(f)     Considering that older persons should have the opportunity to be actively involved in decision-making processes about policies and programs, including those directly concerning them;

(g)   Recognizing the fact that older persons often live in conditions of poverty, and highlighting the importance of accessibility to the rights to the physical, social, economic, and cultural environment, to health and education, and to information and communication, in enabling older persons to fully enjoy all human rights and fundamental freedoms;

(h)   Recalling human rights principles proclaimed in the United Nations Charter, the Universal Declaration of Human Rights, the International Covenant on Civil and Political Rights, the International Covenant on Economic, Social and Cultural Rights, the Convention on the Elimination of All Forms of Racial Discrimination, the Convention on the Elimination of All Forms of Discrimination against Women, the Convention on the Rights of Persons with Disabilities, the Convention on the Protection of the Rights of All Migrant Workers and Their Families, the Geneva Convention Relative to the Protection of Civilian Persons in Time of War, as well as other international and regional human rights treaties and instruments;

(i)     Recalling also the Vienna International Plan of Action on Aging (1982), the International Federation on Ageing Declaration on the Rights and Responsibilities of Older Persons (1990), the U.N. Principles for Older Persons (1991), the Brasilia Declaration on Ageing, World Health Organization (1996), the International Federation on Ageing, A Montreal Declaration on the Rights and Duties of Older People (1999), the Madrid International Plan of Action on Ageing (2002), the Toronto Declaration on the Global Prevention of Elder Abuse (2002), Brasilia Declaration, Economic Commission for Latin America and the Caribbean (2007), the Yokohama Declaration (2010), the Vienna Ministerial Declaration (2012), the San Jose Charter on the Rights of Older Persons in Latin America and the Caribbean (2012), the Istanbul Initiative on Ageing Congress Declaration (2013), the Council of Europe Committee of Ministers’ Recommendation on the Promotion of Human Rights of Older Persons (2014), the Draft Charter on the Rights and Freedoms of Older Persons, Australian Research Network on Law and Ageing,  the Draft Inter-American Convention on the Human Rights of Older Persons, the Draft Protocol to the African Charter on Human and People’s Rights on the Rights of Older Persons in Africa, and other international documents promoting the rights of older persons; and

(j)     Convinced that a comprehensive international convention to protect and promote the rights of older persons will contribute to redressing the profound social disadvantage of older persons and promote their equal participation in the civil, political, economic, social, and cultural life in both developing and developed countries.

We hereby adopt the following Chicago Declaration on the Rights of Older Persons in order to advance the creation of an international convention on the rights of older persons.

Article 1 – Purpose and Core Principles

(a)   The purpose of this Declaration is to provide, advance, and promote a basis for the development of a convention on the full and equal enjoyment of all human rights and fundamental freedoms by older persons, and to promote respect for their inherent dignity.

(b)   The principles recognized by this Declaration are:

1.    Respect for inherent dignity;

2.    Respect for individual autonomy, including the freedom to make  one’s own choices;

3.    Respect for the independence and capabilities of older persons;

4.    Respect for interdependence and caring relationships;

5.    Respect for non-discrimination and equality under law;

6.    Respect for family relationships and intergenerational solidarity;

7.    Respect for full and effective participation and inclusion in society;

8.    Respect for and recognition of older persons as part of human and cultural diversity; and

9.    Respect for aging as an integral and continuous part of life.

Article 2 – Human Rights and Fundamental Freedoms of Older Persons

Older persons have the following rights and nothing in this Declaration diminishes any greater rights granted to them that may be contained in local, national, regional, or international law.

(a)  Equality, Non-Discrimination, and Equal Opportunity

Discrimination against older persons on the basis of age is prohibited.

(b)  Quality of Life

1.    Older persons have the right to the effective enjoyment of the right to life, to live with dignity in old age, and to make decisions about the quality of their lives.

2.      Older persons have the right to support in making decisions regarding their present and future circumstances.

(c)   Liberty

1.    Older persons have a right to liberty and security of person.

2.    Old age should never justify a deprivation of liberty.

3.    Older persons have the right to personal mobility with the greatest possible independence.

4.    Older persons have the right to liberty of movement, freedom to choose their residence, and the right to a nationality.

(d)  Equality Before the Law

1.    Older persons have the right to equality before the law.

2.    Older persons have the right to access to justice on an equal basis with others.

3.    Older persons are equal before the law and are entitled without any discrimination to the equal protection and equal benefits of the law.

4.    Denial of legal capacity on the basis of old age is prohibited.

5.    Older persons have the right to assistance and support in the exercise of their legal capacity.

(e)  Health and Long Term Care

1.    Older persons have the right to the enjoyment of the highest attainable standard of physical and mental health and long term care without discrimination on the basis of age, including access to public health, preventive medicine, palliative care, and rehabilitation.

2.    Older persons have the right to the benefits of scientific progress and health and long term care related research.

3.    Older persons have the right to self-determination in health and long term care related matters and to make such decisions based on informed consent.

4.    Older persons have the right to dignity, privacy, and autonomy in making health and long term care related decisions.

5.    Older persons have the right to express their wishes and preferences regarding future health and long term care related decisions and to have those expressions respected.

6.    Older persons have the right to assistance and support in receiving, understanding, and processing information in making informed health and long term care related decisions. 

(f)   Adequate Standard of Living

Older persons have the right to an adequate standard of living, including the right to food, water, clothing, and housing, and to improve their living conditions without discrimination on the basis of age.

(g)  Housing

1.    Older persons have the right to adequate housing.

2.    Older persons have the right to choose on an equal basis with others their place of residence, the persons with whom they may live, and they are not obliged to live in any particular living arrangement.

3.    Older persons have the right to security of tenure free from disproportionate interference.

(h)  Living Independently and Being Included in the Community 

1.    Older persons have the right to live independently and to make choices to facilitate their full inclusion and participation in the community.

2.    Older persons have the right to access and choose a range of in-home formal or informal care and other community support services. This includes personal assistance necessary to support independent living and inclusion in the community and to prevent isolation or segregation from the community.

3.    Older persons have the right to community services and facilities that are responsive to their needs.

4.    Older persons have the right to participate fully in all aspects of life, including equal access to the physical environment, transportation, information, communications, technology, and other facilities and services open to the public.

(i)   Education

Older persons have the right to education, training, and life-long learning without discrimination.

(j)   Work and Employment

1.    Older persons have the right to work, including the right to participate in a workforce that is open, inclusive, and accessible to persons of all ages.

2.    Mandatory retirement based on age is prohibited.

(k)  Land and Other Property

1.    Older persons have the following rights without discrimination on the basis of age or gender: to use, own, transfer, inherit, and participate in the redistribution of land and other property.

2.    Older persons have the right to exercise self-determination with respect to their property and the right not to be arbitrarily or unlawfully deprived of their property.

(l)   Freedom from Torture or Cruel, Inhuman, or Degrading Treatment or Punishment

Older persons have the right to be free from torture or cruel, inhuman, or degrading treatment or punishment.

(m)Freedom from Exploitation, Concealment, Violence, Abuse, and Neglect

1.    Older persons have a right to be free from all forms of exploitation, concealment, violence, abuse, and neglect.

2.    Older persons have the right to recovery and reintegration when exploitation, concealment, violence, abuse, or neglect is committed against them.

3.    Older persons have the right to recovery and reintegration in an environment that fosters dignity, health, well-being, self-respect, and autonomy, and is sensitive to self-identification and personhood.

4.    Older persons have the right to be free from medical abuse, including nonconsensual treatment, medication, experimentation, and hospitalization.

5.    Older persons may not be denied medical treatment or have medical treatment limited on the basis of age.

(n)  Freedom of Expression and Access to Information

Older persons have the right to freedom of expression and opinion, including, the freedom to seek, receive, and impart information and ideas on an equal basis with others and through all forms of communication of their choice.

(o)  Freedom of Association

Older persons have the right to freedom of association and to create their own associations.

(p)  Respect for Privacy

Older persons have the right to privacy, in all aspects of their lives, including, in their home, family life, communications, intimacy, health, and financial matters.

(q)  Social Protection

Older persons have the right to social protection, including income security, without discrimination on the basis of age or gender.

(r)   Participation in Social, Political, and Cultural Life

1.    Older persons have the right to participate in cultural life, recreation, leisure, and sport.

2.    Older persons have the right to exercise political rights, including the right to vote, stand for office, and participate in the political process.

(s)   Right to Assistance

Older persons have the right to assistance in exercising the rights in this Declaration.

Article 3 - Obligations of States with Respect to Human Rights and Fundamental Freedoms of Older Persons

(a)    Each State should ensure and promote the full realization and exercise of all human rights and fundamental freedoms for older persons without discrimination of any kind on the basis of age.  To this end, each State should:

1.   Adopt appropriate legislative, administrative, and other measures to implement the rights recognized in this Declaration;

2.   Take all appropriate measures, including legislation, to modify or abolish existing laws, regulations, customs, and practices that constitute discrimination against older persons;

3.   Take into account the protection and promotion of the human rights of older persons in all policies and programs;

4.   Promote research and development of universally-designed goods, services, equipment, facilities, and technology to meet the specific needs of older persons;

5.   Provide accessible information to older persons about all forms of assistance, support services, facilities, technology, scientific progress, and health-related research;

6.   Promote, train, and support formal and informal caregivers, including family members, working with older persons;

7.   Take measures to ensure access to justice by older persons;

8.   Prevent the occurrence of exploitation, violence, abuse, or neglect;

9.   Ensure that independent authorities effectively monitor facilities and programs serving older persons;

10.Ensure that age-related laws, policies, and practices, including protection services against exploitation, violence, abuse, and neglect are sensitive to race, color, gender, sexual orientation, ethnicity, language, religion, political or other opinion, national or social origin, property, birth or other status, disability, and other appropriate factors;

11.Adopt laws, policies, and practices to ensure that instances of exploitation, violence, abuse, or neglect of older persons are identified, investigated and, where appropriate, prosecuted; and

12.Protect the privacy of older persons in all aspects of life, including, in their home, family life, communications, intimacy, health, and financial matters.

(b)    With regard to economic, social, and cultural rights, each State should take measures to the maximum of its available resources and, where needed, within the framework of international cooperation, with a view to achieving progressively the full realization of these rights, without prejudice to those obligations contained in the present Declaration that are immediately applicable under international law.

(c)     In developing and implementing this Declaration, each State should closely consult with and actively involve the participation of older persons directly and through their representative organizations.

(d)    Nothing in this Declaration diminishes any greater rights granted to older persons that may be contained in local, national, regional, or international law.

(e)    The provisions of this Declaration should extend to all parts of federal states without any limitations or exceptions.

(f)   Each State should guarantee effective legal protection against all forms of discrimination against older persons in all aspects of their lives, including direct discrimination, indirect discrimination, failure to provide reasonable accommodation, discrimination by association, discrimination based on perception, and discrimination based on more than one characteristic.

(g)  Each State should take active measures to ensure non-discrimination against older persons in areas where they may face particular historical discrimination, such as access to financial services, employment, and insurance.

(h)  Each State should ensure that health and long term care are accessible, affordable, available, acceptable, and of adequate quality.

(i)   Each State should recognize the autonomy of older persons and take appropriate steps to support their decisions to live independently where appropriate, and to promote their full inclusion and participation in the community.

(j)   Each State should take steps to educate older persons about this Declaration and of their rights under local, national, regional, and international law.

(k)  Each State should ensure, without discrimination on the basis of age or gender, the rights of older persons to own, transfer, inherit, and participate in the redistribution of land and other property.

(l)   Each State should respond without delay to reports or allegations of abuse or maltreatment of older persons, especially those who are in detention facilities or are otherwise deprived of their liberty.

(m)Each State should protect older persons from unnecessary pain and suffering by providing access to health care and palliative care.

(n)  Each State should protect older persons from unnecessary use of physical and chemical restraints.

(o)  Each State should prevent and prosecute exploitation, concealment, violence, abuse, and neglect of older persons.

(p)  Each State should recognize and protect family and other private relationships of older persons, including grandparenthood, and relationships of extended caregiving.

(q)  Each State should provide social protection, including income security, to older persons without discrimination on the basis of gender.

(r)   Each State should provide assistance to older persons in exercising their rights in this Declaration

(s)   Each State should closely consult with and actively involve older persons and their representative associations in developing legislation and policies affecting their rights in this Declaration.

(t)   Each State should protect the rights of older persons during armed conflicts, humanitarian emergencies, and natural disasters.

Article 4 - Women

(a)  Each State should recognize that older women are subject to multiple discrimination, and in this regard shall take measures to ensure the full and equal enjoyment by them of all human rights and fundamental freedoms.

(b)  Each State should take special measures to ensure the full development, advancement, and empowerment of older women, for the purpose of guaranteeing them the exercise and enjoyment of their human rights and fundamental freedoms.

Article 5 – Older Populations with Specific Vulnerabilities

(a)  Each State should take special measures to ensure the full and equal enjoyment of all human rights and fundamental freedoms by specially vulnerable populations including the following;

1.    National, ethnic, language, or religious minorities;

2.    Stateless persons, migrant workers, internally-displaced persons, or refugees, and their families;

3.    Lesbian, gay, bisexual, transgendered, or intersexed persons;

4.    Persons experiencing a crisis, a tragedy, or an emergency;

5.    Inmates or detainees;

6.    Persons with dementia including Alzheimer’s disease;

7.    Persons with disabilities, including physical, mental, intellectual, or cognitive disabilities;

8.    Persons living with HIV/AIDS;

9.    Persons living in long-term care facilities;

10. Persons requiring in-home care; and

11. Persons living with chronic pain or chronic conditions.

(b)  The enumeration of specially vulnerable populations in article 5(a) should not be construed to exclude other older vulnerable populations.

Article 6 - Emergencies

Each State should take all reasonable measures to ensure the protection and safety of older persons during armed conflicts, humanitarian emergencies, and natural disasters.

Article 7 – Research, Statistics, and Data Collection

(a)  Each State should support and undertake research in the field of ageing.

(b)  Each State should collect appropriate information, including statistical, scientific, and other research data, to enable them to formulate and implement policies to give effect to this Declaration. The process of collecting and maintaining this information should:

1.    Comply with legally-established safeguards, including legislation on data protection, to ensure confidentiality and respect for the privacy of older persons; and

2.    Comply with internationally-accepted norms to protect human rights and fundamental freedoms and ethical principles in the collection and use of statistics.

(c)   Each State should collect appropriate information, including statistical, scientific, and other data to assess its obligations to implement the provisions of this Declaration and to identify and address the barriers faced by older persons in exercising their rights.

(d)  Each State should appropriately disaggregate and disseminate statistical information and ensure their accessibility to older persons and others.

Article 8 - Awareness-Raising

(a)  Each State should adopt immediate, effective, and appropriate measures:

1.     To raise awareness regarding the rights of older persons, and to foster respect for their rights, dignity, and personhood;

2.     To promote awareness of the capabilities, contributions, and diversity of older persons; and

3.     To eliminate ageism, stereotypes, prejudices, and related harmful practices.

(b)  Measures to this end include initiating and maintaining effective public awareness campaigns designed:

1.    To promote recognition of the skills, merits, and abilities of older persons, and of their contributions to the family and community;

2.    To promote recognition of the skills, merits, and abilities of older persons, and of their contributions to the workplace and the labor market;

3.    To nurture receptiveness to the rights of older persons;

4.    To promote positive perceptions and greater social awareness towards older persons;

5.    To foster at all levels of the education system respect for the rights of older persons;

6.    To encourage public portrayals of older persons in a manner consistent with the purpose of this Declaration;

7.    To promote awareness-training programs regarding the rights of older persons; and

8.    To promote social and education activities that engage and promote inter-generational understanding, relationships, and cooperation.

Article 9 – National and International Cooperation and Development

(a)  Each State should recognize the importance of international and regional cooperation, and support efforts to realize the purposes and objectives of this Declaration.

(b)  Each State should recognize the importance of inclusion of older persons in the formulation of national, regional, and international cooperation and development programs.

Article 10 - Definitions

(a)  For purposes of this Declaration, an “older person” is generally any person who due to chronological age or status is considered under local or national law to be an older person or is perceived as being an older person.

(b)  This Declaration recognizes that a specific age at which a person is considered or is perceived as being an “older person” will vary from country, region, culture, change in social role, personal capabilities, and other circumstances.

Adopted on July 11, 2014 at The John Marshall Law School in Chicago, Illinois at the conclusion of the 2014 International Elder Law and Policy Conference organized by The John Marshall Law School, Roosevelt University of Chicago, College of Arts and Sciences, and the East China University of Political Science and Law (Shanghai, China).

This Declaration is a work-in-progress and we will update or revise it from time to time.