Aging between Participation and Simulation

Ethical Dimensions of Socially Assistive Technologies in Elderly Care

Joschka Haltaufderheide, Johanna Hovemann, Jochen Vollmann, Joschka Haltaufderheide, Johanna Hovemann, Jochen Vollmann

• Publisher: De Gruyter
• Year: 2020
• ISBN:
  9783110677584
• Edition: 1
• Topic: Medicine
• Subtopic: Ethics in Medicine

With increasing urgency, decisions about the digitalized future of healthcare and implementations of new assistive technologies are becoming focal points of societal and scientific debates and addresses large audiences. Decisions require a careful weighing of risks and benefits and contextualizing in-depth ethical analysis with robust empirical data. However, up to now, research on social assistive technologies is mostly dispersed over different academic fields and disciplines. A comprehensive overview on discussions regarding values at stake and ethical assessment of recent developments especially in healthcare is largely missing.

This publication initiates an interdisciplinary discourse on ethical, legal and social implications of socially assistive technologies in healthcare. Contributions include perspectives from nursing science, social sciences, philosophy, medical ethics, economics and law to present an – to our knowledge – first and comprehensive overview on different aspects of the use and implementation of socially assistive technologies from an ethical perspective. It combines practically relevant insights and examples from current research and development with ethical analysis to uncover exemplary moral tipping points between promotion of participation or well-being and risks and damages to these values. Healthcare professionals involved in implementation of smart technologies as well as scholars from the field of humanities, nursing and medicine, interested in the discussions on ethics and technology in healthcare, will benefit from this new contribution.

The publication is part of the international DigitAs conference "Aging between Participation and Simulation – Ethical Dimensions of Socially Assistive Technologies" held at the Institute of Medical Ethics and History of Medicine (Ruhr University Bochum) from 4 February to 8 February 2019. Within this framework, twelve young scholars were invited to discuss their contributions with renowned experts in the field. The Institute of Medical Ethics and History of Medicine is one of the leading institutes in empirically informed ethical analysis in healthcare and medicine and is a member of the European Association of Centres of Medical Ethics (EACME).

Part I: Foundations of discussion – The value of caring relationships

2 Challenges in interacting with people with dementia

Claudia Dinand

Margareta Halek

Abstract: Adequate and mutual interaction is a key factor for a good and stable relationship between people with dementia and their carers and a prerequisite for living well with dementia. The dominant features of dementia include cognitive impairment and behavioral changes in people with dementia, often referred to as “challenging”. Whether communication is successful or not depends, on the one hand, on the type and degree of cognitive impairment and the skills and resources available to people with dementia and, on the other hand, on the ability of the environment to interpret and understand the utterances and the meaning of the behavior.

In the first part of this essay we begin with a description of the different concepts of challenging behavior and their theoretical assumptions and backgrounds. We then describe the particularities of the nursing perspective and show the state of the art in caring for people with dementia with challenging behavior. We will also consider current evidence on the different views on the phenomenon facing the perspective of professionals, family carers and people with dementia themselves.

In the second part, we alternately describe and reflect on a very short sequence of a micro interaction of a couple at home during a meal. With regard to current theoretical discussions, the example gives a first impression of the tiny, situational and complex interactional attunements and underlines the need for sensitive communication skills of people caring for people with dementia.

2.1 Introduction

Dementia has an enormous impact on daily living of people with this disease and for all surrounding them. One of the most prominent challenges in dealing with dementia is the creation of an appropriate and effective interaction. The dementia process causes direct communication impairments due to pathological changes in particular brain regions (e. g. anomia, aphasia, impairments in motor performance of speech). But the major part of communication and interaction problems is a result of misadjustment between dementia related impairments, available capabilities of the person with dementia and the competency of the environment to deal with the communication difficulties.

One of a dominant characteristic associated with dementia are, along with cognitive impairments, the changes in behavior of people with dementia. The prevalence of behavioral symptoms of people with dementia living at home is 53 % in Germany (Teipel et al. 2015; Thyrian et al. 2015) and between 11–90 % international (Borsje et al. 2014). Behavioral changes are one of the first signs of dementia and they accompany people throughout the entire course of the disease. These behavioral changes have a lot of different names: disturbing, problematic, challenging, neuropsychiatric symptoms, need-driven, reactive, behavioral and psychological symptoms of dementia and many more (Halek 2019, 2019a).

Behavioral changes are challenging for family members and professional carers. They are disturbing and stressful and are responsible for heavy burden (Feast et al. 2016; Thyrian et al. 2015) on formal and informal carers. People with dementia showing challenging behavior are at higher risk for psychotropic drug use and use of restrains (Kunik et al. 2010). There is a higher risk of health problems, increased care dependency and hospital (Toot et al. 2013) and nursing home admissions (Toot et al. 2017). As a consequence, the behavioral changes influence the quality of life, autonomy and self-esteem negatively. For these reasons there are a lot of research efforts with regard to developing interventions which can prevent or decrease the occurrence of challenging behavior. For the home care setting the research activities focused mostly on training and counseling of caregivers on various topics (e. g. coping strategy, handling, and access to the services) (Feast et al. 2016).

2.2 What is exactly this behavior that challenges?

The numerous terms existing in the literature and daily language are umbrella terms for behaviors like agitation, disinhibition, aggression, irritability, euphoria, resistance to care, apathy, anxiety, hallucination and delusion and many more. The origin of the dementia related behaviors dates to the nineteenth century. The physician Esquirol used the term emotional disorder to describe senile dementia. At the beginning of the 20th century, Auguste D. was described by her doctor Alois Alzheimer in 1901 as a patient with cognitive disorders, aphasia, delusion and unpredictable behavior (crying). She went down in history as the first diagnosed Alzheimer’s patient (Möller and Graeber 1998). Since then, behavioral disorders have been an important feature of dementia diagnosis. The behavioral disorder in dementia left its first traces in Medline – the most important article database in health – in 1965. These first articles discuss agitation terms of senile sclerosis. Further topics are psychoses, delusions, or so-called psychohygenic problems in nursing homes. The problem behavior as a topic also appears in the 60 to 90 years without the connection to dementia but in the general connection to geriatric patients or residents of nursing homes. In one of the first studies on “wandering”, i. e. on “apparently aimless or disoriented locomotion”, residents of a nursing home are examined. It was found that although the number and quality of movement of walkers and non-walkers differ greatly from one another, there are no differences between the two groups in the so-called organic brain syndrome: the difference was in short-term memory (Snyder et al. 1978). The research activities in the 1980 s, which marked a boom in research into behavior and dementia, started researching behavior independently of the diagnosis of dementia. One example is the psychologist and statistician Jiska Cohen-Mansfield, who initially based her entire agitation research on the population of elderly people in nursing homes. The cognitive limitations emerged as a strong influencing factor in this context. It is also the time of the development of the first important behavioral instruments like Cohen-Mansfield Agitation Inventory (Cohen-Mansfield, Marx, and Rosenthal 1989) or the BEHAVE-AD (Reisberg, Auer, and Monteiro 1996), which is mainly used in pharmacological research. Studies in the 1990s tried to bring some order to the topic. The IPA (International Psychogeriatric Association) introduced a change in term—from problem behavior to BPSD (behavioral and psychological symptoms of dementia) (IPA 2012). The IPA distanced itself after a comprehensible consensus process from terms with negative connotations such as problem behavior or behavioral disorders. Other instruments are being developed, including the NPI (Neuropsychiatric Inventory) (Cummings 1997) which is now the most widely used behavioral assessment tool in research and clinical practice. The development of guidelines on management of dementia related behavior started. The topic of behavior and dementia experienced a further upswing from the turn of the millennium. The discussion about the perspective on the behavior and its changes began. The differences between a medical and social perspective on the behavior were worked out. The term “challenging” behavior as a more psychosocial alternative is proposed (Bird and Moniz-Cook 2008). In addition, the research activities were launched on intervention for dealing with the behavior of people with dementia with strong focus on psychosocial aspects and non-pharmacological approaches (Moniz-Cook et al. 2011). In 2018 the Medline lists approximately 1600 publications with the keywords behavior and dementia in 2018.

As a result of the comprehensive discussion of the topic “behavior and dementia” different views, definitions and theoretical approaches are developed that exist in the science and in the clinical practice. While the theoretical, scientific perspectives are well documented in the numerous papers and can be extracted, the view of the clinical practice is less examined and can be found in practice reports, popular literature and few scientific papers. The discussion about the “right” view or term or definition is not trivial because how we, the practitioners, families and researcher see and interpret the behavior of people with dementia, results in the way care is provided and determines their quality.

The different disciplines have their own explanatory approaches, which differ but also have things in common. We carried out a conceptual analysis of the phenomenon with the question of what is meant by the phenomenon “behavioral problems”. The literature search covered the years 1965 to 2012. According to stratification by years and disciplines, 10 % of the articles were examined for significance for the question and finally 224 articles were analyzed and the definitions or descriptions extracted. The analysis of the texts emphasized the dominance of the medical perspective. From a medical point of view, behavioral disorders, together with deficits in cognition and effects on daily life, are an essential feature of disease definition. Also in the DSM-5 classification for neurocognitive disorders, behavioral disorders are listed as an additional specification feature (Maier and Barnikol 2014). From a medical perspective, behavioral problems are a symptom or side effect of dementia. Symptoms are usually treated medically in order to eliminate or at least minimize them. In the case of chronic illnesses, which include dementia, the aim of the therapy is therefore the greatest possible absence of symptoms. Applied to behavioral problems, it is therefore a matter of preventing, eliminating or at least reducing these symptoms. This understanding is the guiding principle for medical research on possible drugs against behavioral symptoms. The definition of the term neuropsychiatric symptoms and BPSD represent this medical perspective. The term “challenging behavior” is transferred from curative education to dementia care (Wüllenweber 2001). The idea behind this term is to turn away from the attribution of a behavioral problem as a sole feature of people with dementia. The “challenge” of the behavioral presentation lies in the interpersonal context. Challenging behavior is a “manifestation of distress or suffering of the person with dementia or of distress in the carer” (Bird and Moniz-Cook 2008 p. 573), and behavior that is experienced as challenging may frequently be in the eye of the beholder (Bird and Moniz-Cook 2008).

This dependency of the perspective and context is a very important feature that has influenced the understanding of the dementia related behavior and in consequence the research and discussion on this topic. In German context the term “challenging behaviors” (ger.: herausforderndes Verhalten) were introduced in Germany in 2006 with the “Rahmenempfehlungen zum Umgang mit herausforderndem Verhalten” (engl. recommendations for dealing with challenging behavior) of the Federal Ministry of Health (Bartholomeyczik et al. 2007). Since then, the term has spread to various dementia-relevant areas, not without criticism. This criticism refers to the continuing negative connotation of the term as a challenge to fight against dementia related behavior and still focusing on the behavior of people with dementia. Although the definition of the challenging behavior is not criticized, the discussion about the right name for the phenomenon is still ongoing, also internationally. Variants such as “behavior that challenges” or “challenges in behavior” are proposed as alternatives. People with dementia and their relatives prefer the terms “changed behavior(s), expressions of unmet need” or BPSD (behavioral and psychological symptoms of dementia) in a clinical context. Terms such as “behavior(s) of concern, challenging behaviors, difficult behaviors” are rejected by the people with dementia and their relatives (Alzheimer’s Australia, n. d.).

The multicausality of behavioral changes is the main future of the need-driven dementia compromised model published by the research team Whall, Kolanowski and Algase in the 1990 s (Algase et al. 1996; Kolanowski 1999; Whall and Kolanowski 2004). This model represents the nursing perspective ...

Table of contents

• Title Page
• Copyright
• Contents
• List of authors
• Introduction
• Part I: Foundations of discussion – The value of caring relationships
• Part II: Practical insights
• Part III: Users’ expectations and needs-based development
• Part IV: Challenging classical concepts
• Part V: Broadening the perspective
• Stichwortverzeichnis