Standards in Dementia Care

Abstract

edited by Alistair Burns on behalf of the European Dementia Consensus Network (EDCON) Group. Taylor & Francis Group, New York, N.Y., 2005, 224 pages, $99.95. In a world with a gradually aging population, dementia is a global problem that is becoming increasingly common. According to Alzheimer Disease International, there are 18 million people worldwide with dementia, of whom almost 25% live in Europe.1 The current state of dementia care in Europe is, therefore, of great interest. Controversies in the evaluation and treatment of dementia in the United States have lead to an abundance of guidelines from geriatric, family medicine, neurology, and psychiatry organizations. Standards in Dementia Care is an ambitious effort from the European Dementia Consensus Network, or EDCON, to summarize and synthesize current practices and guidelines for the treatment of Alzheimer's disease across Europe. EDCON's members are drawn from the United Kingdom, the Netherlands, Switzerland, Spain, and Denmark. This book is divided into 6 sections: an introduction, a European perspective on the practice of dementia care, multidisciplinary working, carer stress, services, and ethical/legal issues. In most chapters, perspectives from different European countries are presented. In the introduction, titled “Standards of Care in Dementia in Europe—A Consensus,” EDCON gives 6 general recommendations for the care of patients with dementia: standardization in care; standards that are evidence-based and applicable to the different sites of care (home as opposed to a long-term care facility, for example); a partnership between patients, their care-givers, and their health care and social workers; carefully planned services; preservation of the dignity of the patient; and support of the caregiver. The second section consists of a general review of dementia care in the 18 European countries. This is perhaps the most interesting section, as an incredible variability in services between countries is displayed. Nations that are wealthier and have socialistic health care offer more detailed and comprehensive services that are government funded. Some countries have government-sponsored research related to dementia care and a national health policy in which geriatric and dementia services are provided. Some countries have guidelines about the diagnosis of dementia, including the role of investigations such as magnetic resonance imaging. The coverage of medications for dementia is also quite variable. Coverage of expensive cholinesterase inhibitors is not universal, and in some countries such as Denmark, only a neurologist can prescribe them. Services such as day care, nursing home care, hospitalization, and respite care are often available, but inadequate funding is common. Subspecialty services are frequently limited, or even nonexistent (for example, only the United Kingdom has a well-developed “Old Age Psychiatry” service). In Germany, there is an acute shortage of geriatricians, with most of them concentrated in university settings. In Belgium, Gingko biloba is covered and there is even a law allowing euthanasia in very special circumstances. Ukraine is a country where both funding and national guidelines are at inadequate levels. Perhaps as a result of this, Ukraine has a high suicide rate among patients with dementia. The third section, “Multidisciplinary Working,” includes 13 diverse chapters covering the issues of the different disciplines involved in the care of dementia. Some discuss how the discipline operates in the author's home country, while others discuss the value of the discipline in general. For example, in chapter 23, Dr. Alistair Burns, a member of EDCON and Professor of Old Age Psychiatry in the United Kingdom, explains the role of the old age psychiatrist, although this subspecialty is not found in most of Europe. The authors give a good overview of how primary care physicians, subspecialists, nurses, social workers, and others who care for and treat dementia patients can and should work together to improve the quality of care received by a patient with dementia. The fourth section is about caregiver stress. It is interesting to note that in Europe, as in the United States, most caregivers are female and deal with “substantial psychological strain.” The chapters give an overview of caregiver stress, organizations that support the caregiver, and elder abuse. Each chapter summarizes the topics and gives practical recommendations. For the most part, the chapters do not excessively detail the issues or resources in any one country, but instead provide a more global perspective. The fifth section is titled “Services,” and these 7 chapters focus on the availability of certain services in a particular country. The main offerings are memory clinics and dementia service centers. An overview of memory clinics is accompanied by recommendations on how these should be developed. The dementia service centers, on the other hand, are discussed in 2 chapters, one about services in the United Kingdom and one about services in Norway. Similarly, government perspectives on dementia care are discussed as they exist in 2 European countries, England and Germany. The sixth and final section deals with ethical and legal issues with respect to autonomy, end of life care, mental incapacity, and hospital/nursing home settings. The content of some chapters is based on the author's research of the situation in his or her own country (e.g., the Netherlands, England). Most of these topics are reviewed in general, and practical recommendations are made. The first chapter is about autonomy and the dignity of people with dementia and discusses the recommendations of the nonprofit organization Alzheimer Europe. Another chapter is about mental incapacity in England and Wales and gives a nice review of the 2004 U.K. Mental Incapacity Bill. The attraction of this book is that it gives the reader some idea of the current state of and future directions for dementia care in Europe. The second section has input from each of the 18 European countries involved. Although the topic of dementia care from the standpoint of epidemiology, evaluation, and treatment was covered in detail in some chapters, in others the review was minimal at best. I would have liked these authors to have used a standardized format to make it easier to compare differences in areas such as government funding, existence of a national health policy, and approved investigations in the initial evaluation of a dementia patient. In latter chapters, some topics are discussed only from the perspective of how the issue is handled in the author's country. Although an overview of how this issue is handled differently in all 18 European countries may have been too unwieldy, after reading about dementia care centers in England and Norway one wonders if they exist and to what degree in other countries, such as Spain or Belgium. Overall, the book is well written. Several authors are involved, and although there is considerable overlap there is very little disagreement and the message is usually quite clear. There are occasional words that differ on this side of the Atlantic, such as carer for caregiver, but these are few and do not interfere with the message. This book will be an interesting read for anyone involved in the care of patients with dementia, whether based in Europe or elsewhere or whether involved in primary or subspecialty care. As a physician working in the United States, I find it interesting to read the European perspective on the diagnosis of dementia and its treatment (both pharmacologic and nonpharmacologic). It is refreshing to see the high standards set by EDCON. It will, however, be a challenge for Europe, with its economically diverse nations, to afford the cost of the detailed and comprehensive care EDCON has recommended.