Dementia and Memory

Introduction for Professionals in Health and Human Services

Thomas J. Farrer, Elise K. Eifert, Thomas J. Farrer, Elise K. Eifert, Thomas J. Farrer, Elise K. Eifert

• Publisher: Wiley
• Year: 2022
• Print ISBN: 9781119658092
• eBook ISBN: 9781119658122
• Edition: 1
• Topic: Psychology
• Subtopic: History & Theory in Psychology
• Index: Psychology

Addresses the psychology and treatment of diseases that affect the memory of an aging population

The aging population is growing, with a significant portion of the population over the age of 65. Epidemiological research suggests that rates of age-related conditions like Alzheimer's disease will increase. Older individuals and their families face a host of problems related to the diagnosis, treatment, and psychological management of these conditions. There is a growing demand for healthcare personnel and professionals in the human and social services who have the knowledge and skills to meet the needs of this special population. Dementia and Memory: Introduction for Professionals in Health and Human Services aims to provide an introduction to dementia and memory disorders for professionals in public health, nursing, social work, gerontology, psychology, and beyond.

This book offers a scientifically rigorous approach with an approachable writing style, making it an ideal resource for all helping professions. All chapters take a multi-disciplinary approach to instruction, and all diseases are presented with applicable historical background. For each condition covered, from Alzheimer's and Parkinson's to depression and frailty, you'll find a description of the condition, epidemiological data, pathophysiology, diagnostic criteria, clinical presentation, treatment strategies, and a case vignette. You'll also learn about older adults' daily needs, behavioral interventions, caregiver stress, and more.

• Gain background knowledge of age-related conditions including Alzheimer's, Parkinson's, Lewy Body dementia, multiple sclerosis, and more
• Learn about the neuroanatomy of the aging brain and how its manifestations lead to unique caregiving issues and challenges
• Discover pharmacological, management, and intervention techniques that will help you better care for aging adults
• Combat caregiver stress and compassion fatigue when dealing with difficult memory disorders and dementia

Anyone who works with older adults in community, clinical, or research settings will benefit from this in-depth information on conditions of aging and dementia.

1
Ethical and Social Issues in Dementia Care

Dr. Frances Bottenberg (Corresponding author)¹ and Dr. Veljko Dubljević²

¹ Lecturer in Philosophy, University of North Carolina Greensboro
² Associate Professor of Philosophy, North Carolina State University

It is often assumed that “ethics” refers to a pre-established and settled set of professional guidelines or even a “philosophy of life” that outlines a list of values to live by. In fact, ethics refers just as much to the challenging work of thinking about, and with, those sets of guidelines and values. After all, ethical principles don’t just appear in the world—they are the result of people talking about them, refining them, and then codifying them. More than that, every situation we encounter requires us to weigh different ethical principles as we decide what to do. This applies especially in situations where ethical dilemmas are present—situations where we must choose among imperfect options, there being no obvious “win-win” solution. In working with people with dementia, this process of ethical deliberation can become very challenging indeed, given the many personal, social, and logistical variables in play. In this chapter, we will examine some key ethical and social challenges that arise in the context of dementia diagnosis, care support, and social integration. To clarify these challenges, the chapter introduces readers to relevant concepts and frameworks in bioethics and suggests how to work through these challenges using ethical analysis.

The Four Pillars of Bioethics

The four principles and pillars of bioethics, which health and human service professionals consult in the case of moral uncertainty or conflict, are (1) respect for autonomy, (2) beneficence, (3) non-maleficence, and (4) justice (Beauchamp & Childress, 2013). Respect for autonomy refers to the right of the competent individual to make personal decisions regarding their own medical care, which includes the right to refuse unwanted treatment. The principles of beneficence (do good) and non-maleficence (do no harm) originate from the earliest versions of the Hippocratic Oath. For instance, these elements guide healthcare professionals in their administration of medical interventions: if there are no other relevant factors to consider, the morally right medical intervention will be the one that is most beneficial to the patient and least harmful. Similarly, human service professionals value enabling their clients to consider both the potential benefits and risks involved in particular decisions or treatments to guide a well-informed decision-making process. While beneficence and non-maleficence are presented in foundational bioethics texts as separate principles, these principles jointly operate as a dyad in clinical and human service work.

Finally, the principle of justice —usually pertaining to the degree to which healthcare resources are fairly distributed among society—is to some extent dictated by the economic environment in which a medical system operates. Notions and theories of justice vary widely across academic and political fields, and we will limit our discussion to the specific cases of injustice as they pertain to living with dementia, while at the same time noting that, at least in the United States, socioeconomic status often determines the degree to which, if at all, healthcare and social service resources are accessible.

Specific ethical issues pertaining to dementia care can easily be encapsulated by the four principles of bioethics, but, as Gilleard and Higgs (2017, p. 461) note, “determining what each principle means and how it should be prioritized in the case of dementia care is the real difficulty.” Even though dementia affects each individual differently, typically dementia as a differential diagnosis is clinically specified in seven stages, each characterized by an anticipated pattern of symptoms associated with increasing cognitive impairment. For example, stage five of seven is characterized by moderate memory loss and difficulty completing simple daily tasks, such as choosing an outfit to wear (Reisberg, Ferris, Anand, de Leon, Schneck, Buttinger, & Borenstien, 1984). A general overview of dementia distinguishes between three broad stages: early, middle or moderate, and late (Alzheimer’s Society, 2020). We follow Gilleard and Higgs (2017, p. 445) in advocating for a stage-like approach to the ethics of dementia, as this provides ethical guidance that is least likely to cause additional suffering and disrespect. This approach requires regular and thoughtful checking-in with people living with dementia and their advocates so that the support received from health and human service professionals can be adjusted to accommodate emerging or worsening symptoms in a timely manner.

Diagnosis Considerations and Stigmatization

Arriving at a confident clinical diagnosis of dementia is about employing sound diagnostic methods and protocols—running through a checklist of cognitive, functional, and biomarker tests that are scientifically established. Bioethical principles such as respect for autonomy, beneficence, and non-maleficence, as outlined in the prior section, also play a role—they help navigate the “when” and “how” surrounding dementia diagnosis.

Turning to the question of “when,” the challenge is balancing respect for the autonomy of someone with dementia with the value of supporting beneficial health and well-being outcomes while preventing or mitigating negative ones. Is the person asking to be tested for Alzheimer’s or a related dementia, or are they in the clinic on a family member’s urging and seem unhappy about the prospect of diagnostic testing? Has the capacity to understand and give informed consent to diagnostic testing been established? And what significance will a positive (or a negative) diagnosis have for treatment options and lifestyle adaptations? How questions such as these are answered not only affect the practical question of “best timing” for diagnostic assessments, they also determine how the various ethical principles at play are prioritized relative to each other.

Similarly, the “how” of dementia diagnosis brings up important ethically loaded questions. Is it always best for an individual to be offered the full array of multiple forms of testing for dementia? For instance, there is substantial expert skepticism in relation to unreflectively using biomarker testing for the purposes of dementia diagnosis (Farrer & Cook, 2021). One reason for this skepticism is that the detection of biomarkers does not correlate with a specific time of symptom onset, nor does it entail that symptoms will ever manifest themselves. If an individual can be diagnosed with dementia based on cognitive or functional assessments, biomarker testing may not be needed and may come saddled with other harms. This example suggests that diagnostic methods themselves are non-neutral and affect the relationship of the diagnosed individual to the diagnosis, as well as the clinician–patient relationship.

Beyond the non-neutrality of diagnostic methods, there is another substantial ethical consideration at play in the context of dementia diagnosis—stigmatization. Dementia is a condition associated with significant prejudice and stigma. There are at least three kinds—structural, social, and self-directed stigma. All of these lead to a range of negative outcomes (Dubljević, 2020b). For instance, structural stigma leads to institutional discrimination that deprives individuals with dementia of effective healthcare, violating the justice principle. If they are labeled as “demented,” their preferences may no longer be taken into account. Social stigma, on the other hand, involves interpersonal victimization or discrimination that may discourage the affected individual from seeking treatment and, once diagnosed, may lead to “social death,” if the individual becomes segregated from the social groups they participated in prior to diagnosis. Self-stigma consists of negative attitudes toward oneself that lead to loss of self-esteem, depression, and poorer health behaviors, such as substance misuse. Self-stigma has also been shown to lead, independently of mood effects, to measurably lowered performance on cognitive and functional testing (Fresson et al., 2017). This effect, known as “diagnosis threat,” is a form of stereotype threat, because it hinges on a person altering their behavior to align with stereotypical expectations placed on a social group they belong to. In this case, people diagnosed with dementia and even those who suspect they may have dementia act out their own capacities or behaviors differently as a result of their expectations of how people with dementia act. Dementia diagnosis threat exists because dementia is so strongly stigmatized in our society. Thus, an ethical imperative we should take seriously involves finding ways to dismantle those types of stigma. This issue is further addressed in the section on social integration later in the chapter.

Assessing Decision-Making Capacity and Moral Agency

Understanding when to place medical decision-making in the hands of a person living with dementia and when to bring in other parties is one of the challenges faced by a staged approach to the ethics of dementia. The notions of capacity (used in legal and medical literature to describe general decisional abilities) and competence (used to describe whether a person has adequate decision-making capacity to make a particular decision—see Tsou & Karlawish, 2014) are complicated by the subjective nature of clinical interviews or patient-report assessment. It is not uncommon for psychiatric clinicians to reach different conclusions following capacity assessments of the same patient (Appelbaum, 2007). Questions of criteria for determination of cognitive capacity (the degree to which an individual is deemed competent to make personal healthcare decisions) are less than clear. In some cases, psychiatric practitioners are able to temporarily restrict medical autonomy entirely by forcing treatment if they determine that individuals are a danger to themselves or others. In such cases, no informed consent process is required, as the individual has been clinically determined to lack capacity (Appelbaum, 2007). That restriction in medical autonomy is something that most, if not all, people living with dementia will experience. However, the key issue is timing, since premature curbing of autonomy humiliates, offends, and infantilizes people. This is why we will focus on providing guidelines for articulating relevant issues and not on a “one-size-fits-all” solution to establishing capacity and moral agency.

One of the most pressing ethical problems with regards to capacity and agency in the case of dementia pertains to the tradeoff between prior autonomous preferences (i.e., wishes stated before the onset of the disease) and current choices of people living with dementia. Two well-established ethical positions, developed by Ronald Dworkin and Agnieszka Jaworska, respectively, offer guidance in the pressing ethical dilemmas regarding capacity and agency.

Ronald Dworkin (1993) argues that there are two types of interests: “critical” and “experiential.” Critical interests are those relating to what an individual considers good or bad and are fundamental to a person. Experiential interests are those relating to one’s immediate encounters: one’s interest in experiencing pleasure, and avoiding pain, etc. According to Dworkin (1993), persons in the late stages of dementia:

…have lost the capacity to think about how to make their lives more successful on the whole. They are ignorant of self […] fundamentally, because they have no sense of a whole life, a past joined to a future, that could be the object of any evaluation […]. They cannot have projects or plans of the kind that leading a critical life requires. They therefore have no contemporary opinion abou...

Table of contents

• Cover
• Title page
• Copyright
• Dedication
• Table of Contents
• About the Editors
• List of Contributors
• Introduction
• 1 Ethical and Social Issues in Dementia Care
• 2 Neuroanatomy and the Aging Brain
• 3 Episodic Memory and Cognition in Normative Aging and Dementia
• 4 Activities of Daily Living: The Role of Rehabilitation Professionals in Dementia Care
• 5 Alzheimer’s Disease
• 6 Vascular Dementia
• 7 Lewy Body Dementia
• 8 Frontotemporal Dementia
• 9 Parkinson’s Disease
• 10 Multiple Sclerosis
• 11 HIV-Associated Dementia and Other HIV-Related Neurocognitive Problems
• 12 Huntington’s Disease
• 13 Overview of Depression in Dementia and Memory
• 14 Partially and Fully Reversible Cognitive Impairment and Dementia
• 15 Prevention and Management of Behavioral Symptoms in Dementia
• 16 Lifestyle Intervention in Dementia: Nutrition and Exercise as Interventions for Dementia Prevention and Management
• 17 Caregiver Stress, Compassion Fatigue, and Caregiver Support
• 18 Diversity in Risk and Response in Dementia and Memory Loss
• Index
• End User License Agreement