Care-Giving in Dementia

Volume 1: Research and Applications

Gemma M. M. Jones, Bere M. L. Miesen, Gemma M. M. Jones, Bere M. L. Miesen

• Publisher: Routledge
• Year: 2014
• Print ISBN:
  9780415101684
• eBook ISBN:
  9781317761808
• Topic: Medicine
• Subtopic: Geriatrics

A practical book for practical people,Care-Giving in Dementia integrates neurobiological information about dementia with specific developments in care-giving. Multi-disciplinary and multi-professional in its approach, it emphasizes the variety of techniques that can be used effectively in caring for persons with dementia.

Chapter 1

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Introduction

Gemma Jones

 

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This is a practical book for practical people; it is aimed at health care professionals and students who spend time doing ‘hands on’ care with elderly persons who are mentally fragile because of having a dementing illness. It is also a covert plea that the area of care-giving in dementia be seen as a speciality area in its own right, and that the reader join in the advancement and promotion of this speciality area. All ideas for change and innovation in health care come from persons in practice, who are angry and discontent enough to sustain the motivation and energy to look for new solutions or means of improvement.

The contributors to this book come from a range of health care professions and countries and are exceptionally dedicated to their work. Hopefully this dedication will be apparent and inspire you as you read through the chapters.

This book had an interesting beginning, arising from discussions amongst a number of us who presented papers at the 13th International Congress on Gerontology, in New York, July, 1985. We were expressing concerns that there seemed to be a disproportionate amount of funding and publicity for neurobiological research into dementia compared with research about ‘care-giving in dementia’. To counterbalance this tendency, we initially undertook to write a joint article about the various approaches to care-giving that we were using individually, and to have it published in a journal. The response was so overwhelming that we had to change to a book format before the original article was ever compiled. As the range of topics continued to increase, we were forced to restrain our content to the following categories: models and theories, interventions for persons with dementia in care facilities, interventions for persons with dementia in the community, interventions for family and, educational approaches to multi-disciplinary care. (Behaviour modification is not included as an intervention in this book because of the consensus of opinion that persons with attentional, short- and long-term memory deficits are not helped by traditional reward and punishment regimens. Remotivation therapy is not included in this book because we could not find anyone who was still using it, or had experience in using it, to contribute a chapter.)

Just as the fields of psychology and nursing are now becoming established as evolving ‘sciences’ in their own right, so too is care-giving in dementia. A brief history of the advances in care-giving might be helpful if you are not used to thinking in terms of this evolution.

Prior to the turn of this century mentally frail and disabled young and old were relegated to workhouses and asylums. (Dementia was not a separately diagnosable condition and persons with aberrant behaviours were thought of as being merely ‘crazy’ or ‘possessed’.) Care in such places was barely custodial. The first study on the results of sensory deprivation in the disoriented elderly was only done in the 1940s. With the advent of space travel there was a spate of research on sensory deprivation. In a nutshell, this research showed that even healthy young adults develop visual and auditory hallucinations within a few hours in conditions of darkness and silence, and even more surprisingly, in the presence of diffuse noise and diffuse light. The comparison of these conditions of sensory deprivation to those existing in many care facilities is a natural one to make.

By the 1950s the first studies of actual stimulation programmes with persons diagnosed as having ‘chronic brain syndrome’ (what we call dementia today), showed that groups which received intensive personalized attention from staff, in addition to receiving occupational and recreational therapy, improved, whereas control groups who did not receive additional attention, generally deteriorated. At about the same time Folsom developed reality orientation therapy (ROT). ROT assumes that persons with dementia can still learn and participate in present reality, as opposed to ‘living in the past’, if family and care-givers repeatedly give them the cues about the environment that they can no longer remember themselves. In ROT, the date, time, season and current events are discussed daily with the dementia sufferer in the hope that this will provide them with the framework to remain present in reality. ROT is used both in the context of providing such information consistently, 24 hours a day, and in group settings.

The limitations of ROT have only recently been critically evaluated. Some people have nothing but physical and psychological pain left in their present reality and they do not want to remain in it, they feel happier reliving pleasant, safe moments in the past. Second, as brain damage in dementia increases, it becomes increasingly difficult, if not impossible, to remain orientated and learn factual kinds of information (see Chapter 5). ROT is now recognized as being helpful in working with persons in the early stage of dementia, but not thereafter. This is because ROT was based on early psychological models of memory, which maintained that if an item of information was repeated often enough, it would move from short-term into long-term memory. (Research has now shown that this ‘two-stage model of memory’ is not correct and that there are many types of memory. These may be differentially affected and spared in various types of dementia. Moreover, only recently have the contributions of visual and attentional deficits to memory failure begun to be examined.) ROT was a laudable beginning to providing personal interventions for persons with dementia, but it was not an end point. Other approaches such as sensory stimulation, resocialization, remotivation and behaviour modification were developed in the 1960s and 1970s. In this book, the even newer methods of reminiscing, life review, music therapy, memory retraining and validation therapy are described. These are not end points in the evolution of care-giving in dementia either; simply developmental milestones. So you see, we have come a long way in developing care strategies and approaches, and there is a long way to go if we seriously want to incorporate new multi-disciplinary research into practice.

With the enormous advances in information about the neurobiology and neuropsychology of dementia comes a new understanding about the different types and subtypes of dementia; how perception, attention and memory are affected; and what abilities are spared. This new information undoubtedly has implications for care-giving but it is not commonly disseminated by academics to professionals who do the daily, practical work.

The problems involved in translating research into practice are well known to all of us. In the field of care-giving for dementia they are more challenging than usual because of the multidiscipinary nature of the research. Collaborative, multidisciplinary research and care-giving has only become a realistic goal with recent advances in diagnostics. Chapter 1 emphasizes how difficult it has been to diagnose and understand dementia processes.

This book does not pretend to fill in the entire gap between research and practice, but it does attempt to demonstrate that many persons are tackling the gap. Hopefully, it will encourage other health care professionals and students who have new ideas and observations from their own practice to contribute to the field of care-giving by openly talking and writing about them. Moreover, this book demonstrates that there are many similarities between the approaches used by persons in different countries and professions. Slow though it may seem, our knowledge in care-giving is evolving, and in a common direction.

The overall key observation we had in editing this book is that many researchers and clinicians around the world have independently come to identify similar types of approaches and techniques for working with the dementing elderly. It is especially encouraging that the care-giving strategies described in this book assume that the behaviours exhibited in dementia still express meaning, symbolically if not explicitly.

The threads that run through these chapters are that: care must be stage-specific; that we must work with the abilities that are ‘spared’ of disease; that lifespan information is needed for individualized care; and, that the results of interpersonal approaches can be a useful source of information for continuous assessment. In the absence of cures or treatments, the ‘happiness’ and ‘optimal stimulation’ of the person, rather than miraculous hopes for restoration of lost functions, are acceptable goals for care-giving interventions at this point in time. (Bère Miesen discusses these and other themes and threads common to the chapters in this book in more detail in Chapter 25.)

While the causes of dementia, its diagnosis, progression, cure and treatment, continue to puzzle and elude us, we must respond to the demographic predictions for an expanded elderly population and plan to meet the needs of those persons who will become demented before effective treatments or cures are available. Given the shortage of trained staff in geriatric settings already, it is difficult to imagine how these enormous future needs will be met.

It is our hope that care-giving in dementia will become a more attractive field to work in if: it is seen as a speciality in its own right; the myth is dispelled that all that is required to work with the elderly ‘comes naturally’, without specific training; care-giving in dementia is not seen as pointless and hopeless; and professionals realize that there are a variety of interpersonal approaches and techniques that can be used effectively to the satisfaction of both the elderly person affected and the care-giver. The feeling of ‘second-class status’ often associated with the care of the elderly should diminish as professional care-givers become involved in the continued evolution of their speciality.

Part I

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Models and theories

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Chapter 2

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Clinicopathologic correlations and the brain–behaviour relationship in Alzheimer’s disease

Thomas Arendt and Gemma Jones

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SUMMARY

This chapter starts with a general description of dementia, its epidemiology, and distinguishes it from the physiological process of aging. Current definitions of dementia and clinicopathologic correlations in dementia are considered before the historical aspects of the use of the term Alzheimer’s disease’ are discussed. The basic pathology of Alzheimer’s disease is described and then the major brain areas are discussed in terms of a neuropsychological view of cognitive and behavioural functioning. The concluding section appeals for professional care-givers to work with those functions that are spared, for as long as they are spared, i.e. to provide stage-specific care, and to make the environments for care-giving as rich and stimulating as possible.

INTRODUCTION

The chapter was intended to be a simple, clear guide to the neuropathology of dementia, describing how it relates to behaviour, with the ultimate aim that perhaps this information will be of use to persons involved in developing new methods of care-giving for dementia. This is a difficult task because oversimplification is potentially as harmful as writing with so much technical detail that the chapter cannot be understood. The dementing illnesses are extremely complex. They show patterns of great variability and are not easily diagnosed, or distinguishable from one another.

This chapter tries to synthesize the current knowledge as systematically as possible, with particular attention to the historical events relating to the discovery of the dementing illnesses. It is very important to understand this history, because the term Alzheimer’s disease has referred to different aspects of the disease at different times. It started out referring persons who had the early onset form of the illness, and it now encompasses both early-and late-onset forms. The literature of the past 30 years cannot be properly understood unless one is familiar with this history.

Dementing disorders are the most common disorders of later life associated with increasing medical, social and economic problems. There are several reasons for the increasing incidence of dementia, which today has reached epidemic proportions, as well as for increased professional and public awareness of it.

Major demographic changes have occurred in the industrial countries throughout the world during the last one hundred years. Whereas at the beginning of this century only about 25 per cent of the population lived beyond 65 years, in our days more than 70 per cent do so (Siegel, 1980). According to the World Health Organization (WHO) this increase in average life expectancy will continue, resulting in a doubling of the number of people aged more than 60 years, within the next 20 years. Whereas this aging phenomenon is already well under way in the more developed parts of the world, it has been predicted that the less developed countries will have reached a situation comparable to that of Europe in 1950 by the year 2025 which means the epidemic of dementia will reach developing countries about half a century later (Table 2.1).

Aging in and of itself is a physiological process, without pathological features. However, aging can influence the onset and course of disorders. Among these, are namely disorders of the cardiovas...

Table of contents

• Cover Page
• Half Title page
• Title Page
• Copyright Page
• Dedication
• Contents
• Figures
• List of Contributors
• Foreword
• Chapter 1 Introduction
• Part I Models and theories
• Part II Interventions for persons with dementia in care facilities
• Part III Interventions for persons with dementia in the community
• Part IV Interventions for family
• Part V Summary
• Name index
• Subject index