Every day, doctors, nurses and care partners violate the basic human rights of millions of people around the world.
In America — and in essentially every other nation on earth — people living with acquired cognitive disabilities are stigmatized and routinely abused by the systems designed to support them.
Can training of frontline healthcare workers in human rights help stop this?
International human rights law is the baseline set by 192 countries in an era of global unity following the atrocities of the second world war. The Universal Declaration of Human Rights was signed in 1948 and sought to establish the foundational rights — for all human beings — that all U.N. member states are bound to ensure.
Over the years, the body of international human rights law has become more robust. Additional protections for women, children, and people with disabilities have been incorporated to address the effects of stigma, discrimination, and abuse.
In practical terms, the body of international human rights law informs the bodies of national and state law created all over the world.
Put simply, it’s illegal everywhere to violate a person’s human rights.
In 2018, a Human Rights Watch report entitled “They Want Docile” laid bare chronic, systematic human rights abuses by administration and staff of nursing homes in the United States. Overmedicated, isolated and shunned by society, people with dementia receive the worst care of any diagnosis globally.
Researchers hoping to improve the lived experience of people with dementia recently conducted a study to investigate the effectiveness of incorporating human rights education into training of frontline care staff. Their paper, entitled “Human Rights, Dementia and Identity” was published in European Psychologist.
Patient care staff, law enforcement, and other public service providers operate according to policies. Things like clinical guidelines, policies and best practice serve as one channel through which local, state and federal laws are put into action in the lives of real people.
The trouble is, it can take decades for international law make it all the way down to the human-to-human, lived experience level.
With a new diagnosis somewhere in the world every 3 seconds, dementia is the epidemic nobody is really talking about. Despite a growing chorus of dementia and disability rights activists making their voices heard at the policy table, very little has changed in real people’s real lives.
The FREDA principles (fairness, respect, equality, dignity, and autonomy) are designed to be used in practice when applying international human rights law in the “real world”. Researchers were looking to test their belief that these principles are relevant to the real lives of people with dementia.
If so, researchers believe that the principles can help inform the development of a framework to drive change all the way down to the direct patient care level.
To test their hypothesis, researchers held a series of focus groups in the United Kingdom. They collected data from 79 participants, all of them either living with a diagnosis of dementia or providing care to a loved one with dementia.
In the focus groups, researchers encouraged participants to explore the meaning of “fundamental human rights” in their own lives. They weren’t told about the FREDA principles or any other human rights model. Rather, researchers allowed the conversations and overarching themes to develop organically.
The team then performed an analysis of the focus group discussions to identify any overarching themes and compared them against the FREDA model.
Researchers discovered that while the FREDA principles were very relevant to the lived experience of people with dementia, one key piece was missing.
It was the issue of personal identity.
People with dementia reported that identity and a sense of “continuing identity” are especially important as they adjust to living with acquired cognitive disabilities. In particular, researchers noted, people with dementia desired that their “identities, choices, personalities, lifestyles, and preferences” be “protected and respected”.
Thus incorporating the principle of identity, researchers propose a new human rights model based on FRIEDA principles.
Together with researchers, study participants put together a list of statements to reflect the practical application of the FRIEDA principles:
“Do not make assumptions about me.
Give me time and space.
Do not exclude me because of my dementia.”
“Listen to me.
Find out what’s important to me.
Make a positive effort to get to know me.
Speak to me.
Look at me when you speak to me.”
“Give me input into the care I receive.
Respect my culture, race, and religion.
I have the right to intimate relationships.
I have the right to vote.”
“Respect my intelligence.
Recognize my skills and talents.
Respect my choices about how I want to live my life.
Let me live my life.”
“Do not embarrass me.
Ask my opinion.
Do not patronize me.
If you are helping me, explain what you are doing to me.”
“Allow me to express my views.
Respect my personal freedom.
Give me the freedom to do what I want, which may include taking risks.
Provide assistance to make decisions for myself.
Take my significant others into account.
Give me advice but do not try to control me.”
Researchers proved that basic human rights principles are integral to the lived experience of people with dementia. In their work, they identified an additional principle: personal identity.
Personal identity is not only comprised of the memories we have about our lives. The way that others see us — our perceived identity — makes up the rest. People with dementia should be seen, first and foremost, as people. While the modern concept of “person-centered care” is very much in alignment with a human rights-based approach, they are not the same thing. Adding one to the other, in whatever amount, will improve the lives of millions of people.
Doctors, nurses, and care partners don’t have to wait for clinical practice guidelines to be reformed. They can improve the patient experience today by reading the statements developed by the focus group, internalizing them, and by remembering that each and every person they treat is a person and not their disease.