Dementia Care - The Adaptive Response

A Stress Reductionist Approach

Paul Smith

• Publisher: Routledge
• Year: 2017
• eBook ISBN: 9781351699105
• Topic: Psychology
• Subtopic: Clinical Psychology
• Index: Psychology

The process of dementia makes the experience of day-to-day living an acute challenge. This could be mediated with educated and timely inputs and the caring contract negotiated to preserve both dignity and quality of life. The premise of the adaptive response model is that armed with the knowledge of human systems and their ability to adapt and adjust and with a firm application and emphasis on person-centred approaches to dementia care then the experience can be enhanced and living with one of the dementias can be made less traumatic. This holistic approach proposes a method of using environmental and social psychology to maximise function in the individual and to minimise the negative and destructive elements of the perceived and real environment.

1 What is dementia? The biological domain

The social model of dementia with regards to care practice in the UK is introduced in the NICE/SCIE guidelines: Dementia: Supporting People with Dementia and their Carers in Health and Social Care, as follows:

For many years, people with dementia were written off as incapable, regarded as little more than 'vegetables' and often hidden from society at large.

During the 1980s and 1990s, there was a move away from regarding people with dementia as incapable and excluding them from society, and towards a 'new culture of dementia care', which encouraged looking for the person behind the dementia (Gilleard, 1984; Kitwood & Benson, 1995; Kitwood, 1997).

People with dementia could now be treated as individuals with a unique identity and biography and cared for with greater understanding.

Building on this work, others (notably Marshall, 2004) have advocated that dementia should be regarded as a disability and framed within a social model. The social model, as developed in relation to disability, understands disability not as an intrinsic characteristic of the individual, but as an outcome produced by social processes of exclusion. Thus, disability is not something that exists purely at the level of individual psychology, but is a condition created by a combination of social and material factors including income and financial support, employment, housing, transport and the built environment (Barnes et al, 1999).

From the perspective of the social model, people with dementia may have an impairment (perhaps of cognitive function) but their disability results from the way they are treated by, or excluded from, society.

For people with dementia, this model carries important implications, for example:

• the condition is not the 'fault' of the individual
• the focus is on the skills and capacities the person retains rather than loses
• the individual can be fully understood (his or her history, likes/dislikes, and so on)
• the influence is recognised of an enabling or supportive environment
• the key value is endorsed of appropriate communication
• opportunities should be taken for rehabilitation or re-enablement
• the responsibility to reach out to people with dementia lies with people who do not (yet) have dementia.

The social model of care seeks to understand the emotions and behaviours of the person with dementia by placing him or her within the context of his or her social circumstances and biography. By learning about each person with dementia as an individual, with his or her own history and background, care and support can be designed to be more appropriate to individual needs.

Moreover, a variety of aspects of care may affect a person as the dementia progresses. Some extrinsic factors in the care environment can be modified, for instance noise levels can be highly irritating but are controllable. Other intrinsic factors, such as the cultural or ethnic identity of the person with dementia, may also have a bearing on how needs are assessed and care is delivered. Some aspects will be more important or relevant to one person than to another.

The social model of care asserts that dementia is more than, but inclusive of, the clinical damage to the brain.

(NICE/SCIE, 2006)

I could not have written a better introduction to the adaptive response principles than this, and if we start by broadly accepting the assertions of the social care model, as outlined above, we are ready to look at the biological basis of dementia, keeping in mind that dementia is more than, but inclusive of, the clinical damage to the brain.

It is often believed, even by some professionals, that 'nothing can be done' with regards to caring for someone with dementia other than to 'make them comfortable, safe, warm and well fed'. This kind of thinking is referred to in academic dementia studies as 'old culture' or less accurately as the consequences of the 'medical model'.

This opening chapter is designed to provide a better understanding of dementia within its neurological and physiological aspects. This book is not about the physical presentation of dementia as a disease, neither is it about population statistics and percentages, but for the lay reader or those new to the subject this chapter by necessity introduces the subject in these terms. In the context of the book the overall model we provide here, when coupled with the contents of Chapter 2 (the psychological and social domains) is referred to as 'new culture' and more specifically as the biopsychosocial model (the dynamic interaction between the biological, psychological and sociological). Read together they provide a good introduction to modern understandings of dementia which you will need to appreciate the principles of adaptive response.

This chapter is quite basic. It must also be kept in mind that, as new science emerges, we are learning that even the way we thought we understood the brain as little as five years ago is now being turned on its head by theories such as adaptive plasticity (how individual brains change and adapt to environments or insult) and the connectome (the revolutionary emerging field of research that is showing that what we 'are' may actually be contained in between the connections made by our neurons and not in the structures themselves).

So while we must never deny the presence of a degenerative neurological pathology, it is hoped that as a result of your reading you see people before you see disease, and that you see people as having many existing, preserved and possibly new capabilities, as well as possessing current needs, wants and hopes.

It is hoped by the end of the following two chapters carers appreciate the uniqueness of each person and understand dementia not just as a physical disease but as being a collection of personality, life history, neurological impairment, present circumstances, physical and psychological well-being, current environment (both the built and social) and the collective future wants, hopes and desires of the person continuing to live within their family unit but now, of course, also living within the care home.

It is rarely stated, but people living with dementia at almost all stages of the disease process have a past, a present and a future. This means they also have dreams and aspirations – just like you and me. In fact the other thing that is rarely stated is that people living with dementia are, indeed, in essence you and me.

The biological domain

Each dementia is unique

When looking at dementia and the dementias throughout this chapter it is important to understand that we generally will be looking at the commonalities of the syndrome. There are recognised signs and symptoms, which tend to be universal – common to all – but dementia is not universal; rather, it is a very personal condition. Due to the individuality of our brains (each brain is slightly different at birth to others, even in identical twins) and the unique neural connections and chemical pathways that develop within our brains as life's experiences imprint themselves on us, each dementia is unique to each individual.

This means that if there are 800,000 people living with dementia now in 2012 in the UK and that if around 62 per cent of these people are living with dementia of the Alzheimer's type (DAT), some 416,967 people are living with similar but not the same disease outcomes. Thus, there are almost 420,000 people living in the UK with their own variant of DAT!

Dementia is a syndrome

Dementia itself is not a specific illness or any single disease process; it is a term used to describe a collection of related diseases and pathologies. When different though potentially related disease processes lead to a similar result, this broad pattern of symptoms is grouped together for ease of reference, and this 'grouping' is referred to as a syndrome. A syndrome is a collection of signs and symptoms that can be commonly grouped together and are recognised as producing a similar outcome even if the causes may be different.

Therefore, we can state: Dementia is a term used medically to describe a collection of various conditions or disease processes which produce similar signs and symptoms and therefore are referred to collectively as the dementias.

There are well over 100 different types of 'dementia' currently recognised, and it is probable many more will come to light in the coming years, even though the general public commonly believe any reference to 'dementia' means someone with Alzheimer's disease.

There are a number of distinctive diseases within the 'dementia' groupings and these include some quite specific processes such as Alzheimer's disease, but we also find much more common processes resulting from common medical conditions such as vascular disease, stroke and from complications from physical illness such as diabetes, sexually transmitted disease (syphilis or AIDS) and even some types of poisoning.

Unique presentations

The spectrum of specific conditions generally grouped under the label of dementia is large and many of these individual processes have very specific presentations, particularly in their early stages. This means it is vitally important for professionals to understand how we should be responding to these various unique presentations (characteristics and associated behaviours).

We should also understand that these presentations (behaviours) in many instances are related directly to the type of or 'stage' of dementia the person is experiencing, their pre-existing personality and how they are reacting to the dementing process, its effects, where they are living and to how they are being treated. (We discuss the validity of 'stages' on p. 49.)

Learning Tip 1: Individual care planning for early stages

It may be largely accurate to say that as most of the major dementias progress, the outcomes will be similar in the end. However, in the early stages of most dementias that are not Alzheimer's disease, very different features will be apparent and therefore different ways of caring for people should be designed and different types of care planning should be evident.

Indeed, when we take a psychological vantage point the respected author Michael Bender has suggested we do not apply the term dementia at all when we discuss this group of affected people, because their individual reactions to the dementing process can be so personal and unique. Instead, he suggests we use the term 'remedial or enduring cognitive losses' (Bender, 2003).

Graham Stokes, however, urges that 'when used judiciously' dementia can be a useful concept – it can be seen as a useful 'compromise diagnosis' which acknowledges a set...

Table of contents

• Cover
• Title
• Copyright
• Contents
• Preface
• About the author
• Introduction
• 1 What is dementia? The biological domain
• 2 What is dementia? The psychological and social domains
• 3 Modern contexts of dementia care
• 4 Stress and adaptive responses
• 5 Adaptive response: the original essay
• 6 Stress: concepts, considerations, appraisal and stress thresholds
• 7 Manipulating the social environment
• 8 Manipulating the built environment
• References
• Index