The dignity of people with dementia is inviolable...

Dr. Heike Baranzke on how we deal with people with dementia.

According to estimates by the World Health Organization (WHO), about 55 million people worldwide were affected by dementia in 2019. In Germany, there are 1.6 million and many of them are very old. Increasing life expectancy thanks to better living conditions is the main reason for the further spread of the disease. But the way people with dementia are treated by society leaves much to be desired. Ethicist Heike Baranzke, a lecturer at Bergische University, sees an urgent need for action here. "The failure in dealing with people with dementia already begins with the fact that one no longer talks with them, but as soon as they have a dementia diagnosis, only about them," says the accomplished scientist. At this point, the depersonalization of dementia patients begins, i.e. the patients are no longer respected as persons, but are treated only as carriers of an illness. However, it is possible to lead a largely independent life for many years even with a dementia diagnosis with appropriate support. It is wrong to view people with a dementia diagnosis only from the perspective of the last phase of life.

Dementia as a taboo subject

Society stigmatizes people, with dementia, because dementia is a taboo subject, he said. "When people talk about dementia, it is portrayed as a quantitatively overpowering, threatening flood that is sweeping over our society. Hardly any other disease is associated with this flood image, a flooding of society with people suffering from dementia. It's a fear and defense image." "In the process, people with dementia are downright dehumanized," she says, "because in essence they are even denied their humanity and their claim to respect for their human rights, and their lives are disqualified as no longer worth living." Adequate treatment looks different: "Even in the advanced stage of their illness, when verbal expression is largely lost, people with dementia have the right to be perceived and taken seriously as human individuals with their needs. Even with limited cognitive and verbal abilities, their expressive behavior is usually understandable as meaningful behavior if one makes the effort of wanting to understand and communicate with dementia patients in an empathic, emotionally supported way in our high-performance accelerated everyday life."

Double discrimination due to Alzheimer's

The hurdles to continuing to perceive people with dementia as equal fellow citizens result from our cognitivist view of human beings, i.e., from the fact that we define ourselves primarily by our cognitive competencies and our intellect, explains the ethicist. But the expression of feelings is also part of the human being. When Alzheimer's disease occurs in old age, for example, it reminds us that all organs age, including our brain. In this respect, those affected by dementia suffer from double discrimination, namely discrimination against dementia and age discrimination. "At the same time, these images of fear and these discriminations also reflect fatalism and helplessness, due to unfulfilled medical therapeutic hopes and promises. Neuroscientific medicine very confidently proclaimed years ago that it would soon be possible to cure this disease. But these therapeutic promises have not been fulfilled to date." In addition, he said, people with forms of early dementia such as frontotemporal dementia or Lewy-body dementia, which can begin as early as age 40, are being left out, as are those who are in the early stages of dementia and are still capable of largely independent living. "Those are usually pointed straight to the nursing home instead of being supported with rehabilitative measures to maintain a largely independent lifestyle," he said. We are only gradually learning that it is possible to live well even with dementia. That's the challenge."

Human dignity is inviolable....

WHO Director-General Tedros Adhanom Ghebreyesus says, "Dementia robs millions of people of memory, independence and dignity, but it also robs the rest of us of the people we know and love." Baranzke feels this quote is very problematic because it shows that the medical profession has yet to truly engage with the issue of dementia. "This quote shows that we adhere to an individualistic ideal of self-sufficiency in our societies," she says, asking, "Who is completely independent and not dependent on the help of others?" All people, she says, are social beings and mutually dependent on each other for support using differently distributed skills. She feels much worse about the equation of memory loss and loss of dignity in this quote. "What kind of understanding of dignity is behind this?" she asks. "Human dignity as the basis of human and fundamental rights is unlosable. No one loses their right to respect for their human dignity and human rights through illness or disability, or even through a terrible crime." This, he said, is clearly laid out in Article 1 of the Basic Law: "Human dignity is inviolable; respecting and protecting it is the obligation of all state authority."

Convention on the Rights of Persons with Disabilities (CRPD)

For just under a decade, the WHO has been drawing attention to dementia as a global health problem and in 2017 presented a 'Global Action Plan` on the subject, which includes recommendations for action by states that will be concretized in national dementia strategies.
According to Baranzke, the disability movement has achieved great things on the way to a social rethinking. It has formulated an awareness of the entitlement of people with disabilities to social support with the greatest possible enjoyment of their human and fundamental rights, he said, and thus corrected the one-sided medical perspectivization and pathologization. "Since 2009, the United Nations Convention on the Rights of Persons with Disabilities (CRPD) has also been applicable law in Germany. For some years now, there has been a growing awareness that cognitive impairments caused by dementia are also 'disabilities' in the sense of the CRPD. And that changes a lot. This establishes a legal right to rehabilitation and everyday supports." For those affected, that means much more extensive entitlements to social services, Baranzke concretizes. "The conceptualization of dementia-related illnesses as disabilities thus creates a changed legal framework for state duties of care toward people with dementia and their family and professional caregivers and outpatient as well as inpatient care structures."

Who judges quality of life?

"Studies in completely different medical contexts, such as in palliative care for the dying, show," Baranzke reports, "that relatives of terminally ill people or even outsiders regularly assess their quality of life worse than those affected themselves. This is a phenomenon that is based on false assumptions and projections and can lead to the danger of 'compassion killings'. New participatory studies with people with dementia show that they, too, perceive their lives with mild or moderate dementia as worth living if they are supported in dealing with their cognitive losses. So a change in perspective is needed when assessing quality of life. The question is: Who suffers from what?"
Furthermore, he said, society needs to avoid discriminating against or shaming people with dementia by ignoring, lying to or constantly correcting them. "People with dementia are unable to tolerate such behaviors that hurt their self-esteem and react either with depressive withdrawal or aggressive protest. Individuals with such behaviors are often neuropharmacologically sedated because they disrupt organizational routines. But this is gross injustice because people with dementia, like those with other disabilities, have a right to social participation and a way of life that suits them." Instead, he said, broad social education is needed, as well as training for medical, nursing and family caregivers of people with dementia on how to communicate constructively with people with dementia.
The relatives of people with dementia must be thought of in a special way when it comes to the topic of quality of life, "because dementia can be accompanied by personality changes and ultimately by the loss of recognition of close relatives," says the scientist. It is not so much the dementia patients themselves who suffer, but above all the relatives, who have to accept a very profound change in the character of the relationship. This is emotionally very stressful and often totally overwhelming. Since caring for dementia patients is indeed very challenging for relatives, this also requires strong professional support - whether on an outpatient, day-care or inpatient basis.

Research into living well with dementia is in full swing

People with dementia need help, no question, but in the early stages of the disease, dementia patients can still manage a lot themselves. Research into living well with dementia is in full swing, Baranzke knows. Whereas those affected used to be regarded as the 'living dead' or 'empty shells,' there was a turning point in the 1980s/90s that can be reduced to the simple sentence: "Communication with people with dementia is possible." Theologian and dementia researcher Malcolm Goldsmith is considered a trailblazer at this point. "Dementia activists* affected by early dementia, in Germany, for example the former interpreter Helga Rohra, are pioneers who show that people with dementia themselves want to be asked what they need."
Now, communication is multifaceted and can also adapt to the abilities of people with dementia. "It is quite essential that you use less cognitive, conceptually abstract and memory-oriented communication already in the questioning," Baranzke explains, "i.e. rather formulate yes/no questions. You need emotion-based and relationship-based communication." If this is practiced, challenging behaviors of people with dementia can also be better recognized as meaningful, because not everything can be blamed on the brain-organic disease. "Very often, unrecognized pain, suffering from social rejection or boredom can also be the reasons for so-called 'challenging behavior`. They are then querulous, restless, running around, but this has nothing to do with dementia. Some of it you won't be able to decode either." Baranzke speaks of detective work, through which relatives and caregivers get back to the ill. Less argumentative, but more emotional, one can learn to understand through practice.

Staying in the middle of society

In Germany, a national dementia strategy has been in place since 2019 to ensure that people with dementia remain 'at the center of society'. "This marks a fundamental paradigm shift in social and health policy that addresses people with dementia as human and fundamental rights bearers with the right to social inclusion and social participation," explains Baranzke, "who have the right to compensation for their specific limitations." The scientist is aware of recent research that proves beyond doubt that dementia patients have a great interest in social inclusion and communicate with their surroundings right into the phase of most severe impairment. In an extremely moving way, the pioneer of person-centered communication, Naomi Feil, shows how grateful people with the most severe dementia are for social inclusion and emotional response. Impressive film examples of Feil's approach of unconditional appreciation can be found on the Internet.
"The National Dementia Strategy elaborates and promotes structures that lead to destigmatization of people with dementia and to better social participation, not least by supporting family and professional caregivers." Medical neuroscience therapy research has always received massive support, he said. However, the promotion and research of the extremely exciting psychosocial nursing care requires the highest attention in order to convincingly give the lie to the impression of an undignified existence and thus to counter societal fears.

Lies betray trust

"Cognitively impaired people communicate more strongly on the basis of emotions and are particularly receptive to nonverbal communication," says Baranzke, "they notice rejection and insincerity very quickly. Words don't matter there, because the more advanced the dementia, the less the meaning of the words matters and the more the approaching attitude matters." Lying in this context is therefore a breach of trust that can no longer be reversed, because, explains the ethicist, "it's not simply playing with words, but an attitude that wants to hoodwink another person or immobilize them as a nuisance, and that is also expressed unconsciously in the melody of speech and in body language." In addition, he said, one must keep in mind that people with dementia also have surprising moments of memory from time to time and can also cognitively unmask a lie. This would damage the basis of trust in the care relationship. "If a lie is applied because of our over-organized daily routine, we should rather change something in our daily routine," advises Baranzke, because it could also affect each of us ourselves. We would have to ask ourselves whether we then wanted to place ourselves in care structures that calculate on deceiving us at will. This social dimension must also be taken into account.

Technology versus physical memory

Our digital age offers a wide variety of attempts to support people with dementia through technical innovations. At Bergische Universität, there is an interesting project that uses images therapeutically. It is a system for seniors in nursing homes who can look at old photos together with their grandchildren via virtual reality conferencing. The family photo album reinvented in the context of dementia prevention. The idea is to activate what can no longer be consciously remembered through images. This is a very nice project that builds a bridge between us cognitively halfway competent people and people with advanced dementia," says Baranzke, "but it is primarily a communicative aid for us cognitively more capable people. Because our culture is so focused on cognitive abilities such as thinking, remembering and speaking, we neglect the physical, emotional and psychosocial communication needs. A lot of money is invested in technology, he said, but even a care robot cannot replace our relational or emotional work. Those emotion-based communication anchors have to be hard-won, he said. "One aesthetic channel that works wonderfully with cognitively impaired people is music," Baranzke says, "and both listening, singing and also dancing, as well as anything that activates body memory." Caring for people with dementia is extraordinarily demanding, the scientist knows, and continues, "There are many people who love this psychosocial Herculean task. We just have to let them and value their talents! Whether dementia or other forms of disability are a horror scenario depends in large part on how we as a society deal with the special needs of such impaired individuals - to what extent we want to be an inclusive society that enables all people to realize their right to social participation. That is the social construction of reality for which we are responsible."

Uwe Blass (interview from Feb. 16, 2022)

Dr. Heike Baranzke is a lecturer in Theological Ethics of Catholic Theology in the Faculty of Humanities and Cultural Studies at Bergische Universität.