No care without trust

Ethicist Heike Baranzke on treatment, care and the emotional work with people with dementia

A study by the World Health Organization predicts that there will be about 40 percent more people with dementia by 2030 ... and no country is prepared! In the pandemic and the related reports about the nursing shortage in hospitals and nursing homes for the elderly, the population was informed in detail. Healthcare facilities are struggling to recruit staff and are even paying bonuses in advance. But what does this mean for us as a society, when fewer and fewer people choose the nursing profession? The remaining caregivers will inevitably spend even less time with the people who need help. Dr. Heike Baranzke, an ethicist in Catholic theology at Bergische Universität, views the development of these impending effects with concern and asks, "Should we resign ourselves to the fact that there are fewer and fewer caregivers?" In her opinion, the first thing to do is to clarify the understanding of nursing.

What do we mean by nursing?

"Caregivers are leaving their profession because they are suffering from a demeaning and overly narrow conception of care due to false economic incentives, including the busting of the health care system since the introduction of long-term care insurance in the mid-1990s, which grants them less and less time with those in need of help," Baranzke states unequivocally and goes on to put it even more drastically: "The human relationship dimension regularly comes up short. Nursing staff see themselves disqualified in the public perception as 'ass wipers'. In this cynical self description of the care specialists the social mortification of the occupation is expressed!" It is not recognized at all that for years the time for a qualified relationship work with the humans in need of assistance entrusted to them is cut. Thus the indispensable human relationship dimension in the care-professional acting comes regularly and programmatically too briefly. "Yet people choose the multifaceted and very demanding nursing profession not least precisely because of the social dimension, which they are then permanently prevented from exercising structurally." They would be under enormous time pressure. The resulting frustration at never being able to do justice to their service to people in a rough and continuous way is the real reason why nurses often leave their profession. Although health care professions have specific scientific and medical knowledge, this knowledge must be applied in the context of relationships with people, especially in the case of the nursing profession. In this respect, he said, the nursing profession is close to the occupational field of social work, especially in the area of outpatient care as well as care for the elderly. "Nursing professions are thus primarily social interaction professions with special medical qualifications," says Baranzke, "but not medical-technical repair professions." The lack of appreciation of psychosocial communication skills is lamented within the nursing professions, he adds. New studies on the doctor-patient relationship prove that neglecting communication can impair healing processes and, in the worst case, even cost human lives. For this reason, the ethicist demands that the importance of psychosocial care activities, which must also include caring for relatives, be significantly increased in all health care professions.

Adequate handling of people with dementia equals social opportunity?

"What image of man is guiding our modern, functional, accelerated high-performance society, which even affects cognitively competent people in their productive old age?" the scientist therefore asks, referring to the many cases of burnout in nursing. It is hardly known that the phenomenon of "burn-out" was first described using the example of the nursing profession. People with dementia who can no longer cope with the ever-increasing pressure to perform and then developed corresponding resistance could consequently even be seen as a social opportunity for rethinking, she explains. Because "people with advanced dementia show the remarkable behavior of not even allowing nursing-technical treatments if the psychosocial relationship building has not taken place. If they haven't established a relationship of trust beforehand, they don't even need to start with personal hygiene. You could say that people with dementia are real revolutionaries. They then react with so-called 'challenging behavior,' in which nursing science research of recent decades has unexpectedly discovered a great deal of reasonableness." This is because, in many cases, people affected by advanced dementia express non-verbally unrecognized pain, ranging from toothache to tumor pain - a highly significant problem that, in many cases, is also not yet sufficiently known on the medical side. In addition, people with dementia consistently want to be recognized as social interaction partners. They suffer greatly from social exclusion. Working with and caring for people with dementia is undoubtedly challenging and socially demanding. But one should not believe that caregivers therefore reject this profession. Baranzke's experience has been quite different. "As part of a DFG research project at Germany's only nursing faculty at the Philosophical-Theological University in Vallendar (Germany's only full faculty of nursing, which was closed last year - editor's note), I met quite a few professional caregivers in nursing homes for the elderly who love their work with dementia patients very much and experience it as deeply satisfying, if they are allowed to work the way they want. There are real natural talents there and also always a lot to laugh about, because humor is enormously important in this field of work." Seen in this light, people with dementia are virtually challenging a social rethink that we all have to face. "If you also sometimes surrender to the leadership of a person with dementia, abstract from the meaning of words and sing together or allow yourself to be led in dance, this leads to interactions on a different level. We just have to engage with it, just as we engage with children. In both cases, it's the emotional level that we can tune into. However, dementia sufferers don't want to be treated like children. Rather, they want to be respected with their life experiences and their individual biographies. This is a significant difference from being compared to children."

The worst place in the health care system

"There is no worse place in the health care system with regard to psychosocial needs than the hospital with its organization," says Baranzke, speaking from the soul of many sick people and relatives, because even cognitively competent patients have a hard time coping with the complete subjugation of individual life needs to the technical-functional organizational process in hospitals. "If you have just fallen asleep as a seriously ill person, fortunately well after midnight, then are woken up again at five o'clock in the morning for the first infusion and at seven there is already breakfast on the tray, then they go insane," says Baranzke and continues: "Cognitively impaired people can be downright traumatized here and thrown off track in their emotional balance. That can give an aggravating dementia boost." In the meantime, however, there are nursing home concepts for the elderly that, with the help of preventive regular health examinations on site, really manage to almost completely avoid hospitalization. If hospitalization is nevertheless unavoidable, a psychosocial companion is absolutely necessary. In some cases, hospitals have now recognized the problem and are engaging in communication training for medical staff or close cooperation with elderly care facilities that are sensitized to the issue. However, this is a real challenge for the prevailing hospital organization.

Person-centered care or from treatment to encounter

In 1995, British psychologist Tom Kitwood developed what he called "person-centered care" (PCC), which focuses on the uniqueness of the person with dementia. Maintaining and enhancing personhood is his primary goal in caring for people with dementia. Kitwood hypothesizes that person-centered care can positively influence the process of dementia. Baranzke sees this as expanding the repertoire of interventions beyond the medical. "Kitwood has increasingly protested since the 1970s against the medical reduction of any expressive behavior of people with dementia to the brain-organic disease, which no longer sees the person behind it. So only the neurological disease is in the foreground, which is to be treated with medical-pharmacological therapeutics. Any behavioral abnormalities are attributed to the brain disease, other causes are misinterpreted, and pain is often not recognized." Therefore, before any medication is given, there must first be an all-encompassing, thorough examination that rules out all other causes. For example, dental pain or tumor pain would have nothing to do with dementia and could not be treated with psychotropic drugs. "Dementia patients must be perceived as individual personalities with their socialization, distinctive biography and preferences, but also fears and hardships, as well as their psychosocial needs," says Baranzke. The war generation alone requires special attention. Person-centered care is about a change of pradigm from treating a disease carrier as an object to an interpersonal encounter and communication with a subject suffering from dementia, i.e. from treatment to encounter.

Learning to understand behavior: an example

"If you're interested in people's biographies," Baranzke says, "you can learn to understand behaviors." One example: a woman suffering from dementia who was in a wheelchair clung everywhere. Even at the table, she wouldn't let go of the tabletop. At some point, it was discovered that this woman had spent a long time of her life on a rocking sailing ship and was therefore used to holding on. "Once they discovered that, they put a little stick in her hand that she could hold onto and things were fine." The researcher calls this learning to understand the individual's biographical body memory. "Apathetic people sitting in the corner, when they see their little grandson kicking a soccer ball, all of a sudden they can get up and kick around again because that's in their body memory." That's why intensive conversations between relatives and nursing staff are also desirable, he said, to be able to identify possible behavior via the biography of nursing home residents.

A lance for the nursing profession: emotional work

In nursing care for the elderly, not least due to our long-standing pandemic, employees* are dwindling and we are talking about a nursing shortage. The question is: How does our society put a stop to this? Baranzke: "The social and health-policy recognition of the nursing profession, especially of geriatric nursing, which is at the bottom of the recognition hierarchy, must change fundamentally, to an extraordinary, demanding and versatile profession, because it is a demanding and versatile profession, a profession where they have to be able to do a lot, know a lot and organize a lot. In principle, they provide eight hours of continuous psychotherapy," explains the specialist and continues, "every psychotherapist takes a break after an hour. Nurses can't afford that. It's a really tough job, but also incredibly varied and therefore holistically demanding." He said that caregivers really suffer from being disregarded by society, and it would already be a gain if that were to change. "We also need society as a whole, and that doesn't just apply to nursing, to value psychosocial care as a job. 'Emotional work`, which is indispensable for the much invoked but little understood dimension of a humane attitude towards particularly vulnerable persons." To better understand her remarks, Baranzke cites a practical example of 'feelings work' in action. "I experienced a wonderful example of 'emotional work' where a nurse played 'Ludo' with some participants of a group suffering from dementia. You could see what kind of work that was. It was not about the joy of the caregiver. She kept a close eye on all the players and knew when someone was overwhelmed and where she had to assist. If this caregiver had done nothing else that day but play Parcheesi, she would have been dog-tired of it. But all the other activities came on top of that. Care work," she concludes, "must be recognized in its psychosocial dimension, which is not adequately paid anywhere. It's work on embodied persons, and it's doing it at full personal cost." Naomi Feil, the founder of Validation, a method and attitude for dealing with people with dementia, says: "It's about meeting the impaired person in his or her perception empathically, at eye level and with respect." And time is infinitely important for this.

Uwe Blass (conversation 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.