Ethical Aspects of Dementia Care

by

Ruth Landau

• LAST REVIEWED: 26 June 2012
• LAST MODIFIED: 26 June 2012
• DOI: 10.1093/obo/9780195389678-0181

Introduction

Dementia is a clinical concept characterized by a person’s progressive decline in mental functioning, eventually leading to loss of identity and total incapacity. The medical profession identifies the following common dementia illnesses: Alzheimer’s disease (AD), vascular dementia (VaD), dementia with Lewy bodies (DLB), and frontotemporal dementia (FTD). AD is the most common form of dementia. Although AD is usually associated with aging, it is also found in younger persons. With deteriorating memory, judgment, and ability to communicate, the person with dementia becomes increasingly more dependent upon others. This continuous decline leads to the need for greater involvement of family members, who provide the majority of the care. Care for persons with dementia raises many ethical dilemmas for caregivers, both family members and professionals, particularly when aggressive behavior, restlessness, wandering, and eating problems are involved. Issues of decision making, formal and informal assessments of capacity, and respect for the personhood of persons with dementia are central in this respect. The need to decide whether the value of autonomy or the value of safety of the person with dementia should be favored can be a burden for caregivers. The potential of paternalism, or dementia care that is dominated by the caregivers’ needs for control over the behavior of persons with dementia, may be another issue of concern. The primacy of autonomy-based values in guiding decision-making processes was challenged in the late 20th and early 21st centuries and replaced by the ethics of care, focusing on a more relational approach, one that views human relationships as central to care. Social work, focusing on the interface among the individual, the family, and the environment, has a unique role in guiding persons with dementia and their families through the process of this devastating disease. Scholars such as Cox (Cox 2007, cited under General Overviews) and Sanders and Swails (Sanders and Swails 2011, cited under Professional Caregivers) argue that social workers can and should assume a more central role in the decision-making process relating to dementia care. Advance statements, preferred priorities of care, lasting power of attorney, or choice of a proxy can be discussed, and decisions can be made together with the person with dementia and the family caregivers while the person still has the capacity to make decisions for the future. Social workers’ skills in assessing the needs of people with dementia and those of their families may also help other professionals and lead to the development of more family-friendly policies.

General Overviews

People aged sixty-five and older are the fastest growing population in the developed world. As the population ages, dementia-related illnesses are becoming more prevalent, with the sharpest increase after age eighty. Although an understanding of the cause has not been achieved, and means of treatment/cure are still unavailable, the vast research and resulting expanding knowledge on dementia suggest greater insight into what persons with dementia and their caregivers are experiencing, as well as more-appropriate ways of providing care. Gemma M. M. Jones and Bere M. L. Miesen have been working together for twenty years, moving between the United Kingdom and the Netherlands, in order to contribute to the laying down of a knowledge base for the developing field of caregiving in dementia, and consequently they have edited four volumes on this topic, including the excellent Jones and Miesen 2004. Hughes, et al. 2010 features contributors mainly from the United Kingdom, presenting models of supportive care for people with dementia. Innes 2009 adds to knowledge of the social structures and processes that have an impact on the lives of those with dementia. O’Connor and Purves 2009, written primarily by Canadian scientists from the social and health sciences and legal domains who participated in an international, multidisciplinary workshop, puts forward diverse perspectives and approaches to understanding the interface among personhood, dementia, and decision making. Qualls and Smyer 2007 is a book that grew out of a geropsychology conference of American mental health professionals gathered to discuss assessments and interventions for decision-making capacity. The challenge of making ethical decisions in dementia care is the explicit focus of Hughes and Baldwin 2006. In Cox 2007 the contributors concentrate on the ways in which social-work expertise can be most effectively used by clinicians, researchers, and advocates in dementia care. The book conveys the message that in order to help persons with dementia and their families, social workers need to overcome their own biases and negative attitudes toward older persons and to be able to offer empathic, culturally sensitive services built on knowledge about dementia.

• Cox, Carole, ed. 2007. Dementia and social work practice: Research and interventions. New York: Springer.

  This is an excellent textbook covering the major topics in dementia care, many of them raising serious ethical questions, and it is written for social-work practitioners. This edited volume presents the knowledge base related to dementia, interventions in the community and care facilities, and the skills used by social workers in working with persons with dementia in diverse cultures.

• Hughes, Julian C., and Clive Baldwin. 2006. Ethical issues in dementia care: Making difficult decisions. Bradford Dementia Group Good Practice Guides. London and Philadelphia: Kingsley.

  Addresses decision-making issues in everyday dementia care. Provides an introduction to ethical principles and theories and illuminates the values that should guide caregivers of persons with dementia.

• Hughes, Julian C., Mari Lloyd-Williams, and Greg A. Sachs, eds. 2010. Supportive care for the person with dementia. Supportive Care. Oxford: Oxford Univ. Press.

  Presents in its thirty-two chapters an updated overview of the various facets of supportive, person-centered care for persons with dementia.

• Innes, Anthea. 2009. Dementia studies: A social science perspective. Los Angeles and London: SAGE.

  Offers an analysis of dementia from a social-science perspective, focusing on the political, economic, social, and cultural aspects of dementia care. Issues of medicalization and politicization of dementia, expectations about dementia care, the role of the family, and the place where care should be provided are discussed.

• Jones, Gemma M. M., and Bère M. L. Miesen, eds. 2004. Care-giving in dementia: Research and applications. Vol. 3. Hove, UK, and New York: Brunner-Routledge.

  Contributors from the United Kingdom and the Netherlands, working in various disciplines, present models of and theories on dementia, interventions in care facilities, topics related to caregiving issues, and the ethical issues these raise for family and professional Caregivers.

• O’Connor, Deborah, and Barbara Purves, eds. 2009. Decision making, personhood, and dementia: Exploring the interface. Philadelphia: Kingsley.

  Using examples from practice, issues of autonomy and personhood are examined. Cultural safety, vulnerability, risk and consent, and financial decision making are among the topics covered.

• Qualls, Sarah Honn, and Michael A. Smyer, eds. 2007. Changes in decision-making capacity in older adults: Assessment and intervention. Papers presented at a conference in the Clinical Geropsychology Conference series, Univ. of Colorado at Colorado Springs, 15–18 June 2006. Wiley Series in Clinical Geropsychology. Hoboken, NJ: Wiley.

  Based on real-life, complex cases, the authors of the chapters in this volume focus on the medical, legal, social, and cultural aspects of decision-making capacity and on clinical evaluation of and intervention with persons with dementia.