Dementia and Human Rights

Dementia and Human Rights

September 23, 2020

Disability Rights Commissioner Paula Tesoriero speech prepared for World Alzheimers Day, 21 September 2020

People living with dementia have all the same human rights as anyone else, but as is noted in the dementia action plan, because of discrimination, these are often not recognised. It is often assumed, by people providing services for people with dementia including health professionals, that a diagnosis of dementia means people with dementia, can’t exercise these rights. 

Human rights embody values - the importance of partnership, participation, protection, safety, dignity, decency, fairness, freedom, equality, respect, wellbeing, community and responsibility.  

The United Nations encourages Governments to incorporate the principles of independence, participation, care, self fulfilment and dignity into national programmes for older people. 

Taking a human rights approach means people living with dementia being treated with respect, participating in decisions that affect them, or being supported to make decisions that are important to them, and their whānau, and accessing the care and support that allows people to live with dignity in the place of their choosing. 

That means  having access to the things people need to live well such as good quality, safe and affordable housing; privacy; an adequate standard of living; a way of getting where they need to go; protection from discrimination; violence, maltreatment and abuse,  and recognition and support for the people caring about and providing support for people with dementia.  

In her end of mission statement for New Zealand earlier this year, Rosa Kornfeld-Matte, the former UN expert on the human rights of older persons,  said the key features of the human rights based approach is that the global minimum rights standards are translated by our laws. She stressed the importance of a holistic policy approach in which they are put into practice through inclusion in policies, programmes and practices – she referred to this as ‘human rights implementation’. 

Ms Kornfeld-Matte urged for particular focus to go on the needs of those with dementia and for improved collection of data. She also said our dementia care must better consider the needs of Māori and other communities and ethnicities.  

Ms Kornfeld-Matte called for a designated Commissioner for Older People. The Human Rights Commission supports this call - establishing such a position would help to create a society where the rich contributions of older people are recognised and their human rights respected. 

The Commission advocates the human rights approach: 

  • Including linking of decision-making to human rights standards (for example in any plan such as Dementia Action Plan)  
  • identifying the human rights and responsibilities of everyone affected and, where necessary, prioritising those of the most vulnerable people (for example, people with dementia who are not easily able to communicate their preferences)  
  • emphasising participation of people in decision-making that affects them (that is people with dementia, families, and support for people not able to participate fully to ensure they can  exercise legal capacity to the greatest degree possible - rather than default to substituted decision makers)  
  • Through non-discrimination among individuals and groups through equal enjoyment of rights and responsibilities 
  • Through accountability for actions and decisions (for example, through robust data, evaluation, and learning what works and needs to be repeated and what doesn't work and needs to be avoided/changed)  
  • And through using human rights to empower people to take part and have a voice. 

There is no comprehensive international convention regarding the rights of older people. None of the foundational human rights instruments, namely the Universal Declaration on Human Rights (UDHR), the International Covenant on Civil and Political Rights (ICCPR), or the International Covenant on Economic, Social and Cultural Rights (ICESCR) explicitly prohibits discrimination on the basis of age.

The Committee on Economic, Social and Cultural Rights (CESCR), notes the omission of age from human rights documents “is probably best explained by the fact that, when these instruments were adopted, the problem of demographic ageing was not as evident or as pressing as it is now.”

While the Universal Declaration on Human Rights (UDHR) states, “Everyone is entitled to all the rights and freedoms set forth in this Declaration, without distinction of any kind, such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status.” It has been argued that older people or discrimination on the basis of age comes under “other status”.

The International Covenant on Economic, Social and Cultural Rights provides generally that states parties recognise the right to social security.

The Convention on the Rights of Persons with Disabilities (CRPD) require States to provide services to prevent and minimise further disabilities among older people, and to ensure older disabled people have access to retirement benefits and programmes.

The Disabilities Convention does apply to people living with dementia, for example, in supporting the right to reasonable accommodation to highest attainable standard of health, to habilitation and rehabilitation and to support for participating in decision-making, and participating in our communities. 

At present the main domestic laws we have that protect human rights are The Bill of Rights Act 1990 and the Human Rights Act 1993.  

The New Zealand Bill of Rights Act 1990 guarantees everyone the right to freedom from discrimination on the grounds of discrimination set out in Human Rights Act 1993. 

The Human Rights Act protects against age discrimination in New Zealand from 16 and has no upper limit on age discrimination.7 This allows older people to make a complaint of age discrimination against both the government and private actors in New Zealand. 

The Human Rights Commission has a role to play in educating and advocating for older people’s rights. We also have a role in monitoring the protection of human rights and can inquire into issues where there is concern about breaches of the Human Rights Act.  

In national emergencies like the COVID-19 pandemic, there must be a balance between ensuring people are protected from infection, and upholding people’s rights, for example, to have safe contact with friends and family, access to health care, and access to easily understood information. It is critical that residential facilities can be independently monitored.  

Under Alert Level 4, people held in secure mental health and dementia units, and other places of detention, were effectively locked down from the outside world. This also applied to rest homes. 

People living in detention may not only be at greater risk of infection but they may also be at more risk of being vulnerable to degrading treatment when they are cut off from full interactions with independent monitoring agencies, statutory visitors and their whänau. 

The Commission is the Central National Preventive Mechanism under the Optional Protocol to the United Nations Convention against Torture. 

The Commission and the other independent bodies designated to inspect places of detention raised that unrestricted monitoring visits should be permitted by the detaining agencies and for access to be included in plans for dealing with emergencies. 

In 2018, The Human Rights Commission published the report This Is Not My Home, which considered the legal and ethical issues around residential care for older people when the care is provided without the person’s consent.  

Very few of the about 5,000 people in secure dementia units or residential psychogeriatric facilities have formally consented to being held in these locked facilities, so it is critical that appropriate safeguards are in place to ensure everyone’s rights and preferences are respected to the greatest extent possible. 

This makes it even more important that we advocate for people with dementia and do whatever we can to ensure that they are supported to live the best life that they can, and that their rights, preferences and wishes are respected as much as possible. 

It’s important that people know that complaints can be raised where there are concerns about someone’s safety or care. Depending on the urgency or facility that may be with the Police, Age Concern, District Health Boards, the Health and Disability Commissioner, or Ombudsman.  

The Human Rights Commission can be contacted if you are concerned about discrimination on the grounds of age, disability, or other matters covered by the Human Rights Act.