People with dementia make up the largest group in long-stay institutional care and, whether within institutions or living in the community, they are extremely vulnerable to forms of social exclusion. This chapter describes how dementia presents particular challenges to designers of living environments as well as how details of design can have a strong impact on the quality of life of people living with dementia. Technology in the homes of people with dementia, also known as assistive technology, assists the person to live as normal a life as possible. However, the availability of the technology for people with dementia is put into question by the author. He describes a successful technology project, which was undertaken in central Scotland before discussing possible reasons, including cost and resistance, for the failure of other local authorities to emulate it.
Current community care policies and increasing numbers of older people needing assistance mean that all social workers must be up-to-date in their knowledge, skills and attitudes towards people with dementia and their carers. This book, written by experienced social workers, provides guidance on best practice in a readable and jargon-free style.
Working with dementia:
· looks at medical, social and citizenship approaches, thus providing the very latest thinking in the field;
· covers a wide range of issues, including often-neglected areas such as sexuality and the design of the built environment;
· provides contextual information about the old and new cultures of care; and
· discusses skills such as communication and practical assistance.
This book is essential reading for social work and social care students, social workers undertaking CPD, and social and care workers transferring to dementia care from other fields.
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We work in complex and ever-changing organisations, which themselves operate in a complex and ever-changing policy context. In this chapter we look at recent policies in England and Wales. Many policy trends in Scotland and Northern Ireland are similar. Since the majority of our readers will be in England and Wales we concluded that we had to limit ourselves or this chapter would be far too long. We clarify the policy trends by describing them under five headings:
Fairness and equality
In the last of these we look at groups we consider to be generally excluded: younger people with dementia, black and minority ethnic groups, people in the early stages of dementia, people with complex needs, homeless people and older people in prison. We also look at staff from overseas.
Older people with mental health problems whose needs cut across all health and social care boundaries have received, until recently, relatively little attention and insufficient new resources to address their specific difficulties. We approach policies aiming to raise standards by reviewing relevant legislation.
Care management is now well established as the working framework for staff in community care teams, including social workers. It is one of those ideas which is plainly sensible, and a reaction against years of inflexible provision of standardised services. In the UK, care management means organising and coordinating a multiplicity of providers, since we have generally assumed that it is undesirable to provide flexible, individually tailored care packages from the local authority alone.
In this chapter we look at two factors that underpin the ‘old’ culture of dementia care: the stigma of mental illness, with its deep historical roots, and the prevalence of task-centred care. We then describe the ‘new’ culture of dementia care. Kitwood was the first person to write about the changes between what he describes as the old and new cultures and we refer to his work in some detail. The second half of the chapter introduces the social and citizenship models of dementia care. In Chapter Two, we introduce the medical model. As you will see, we believe that although social work is primarily about the social model, social workers need to understand all three in order to provide the best dementia care.
In his useful chapter looking at sociological perspectives and dementia, Bond (2001, p 227) provides a good, clear definition of stigma: stigma ‘refers to a relationship of devaluation in which one individual is disqualified from full social acceptance. Stigma is a social attribute, which is discrediting for an individual or group’. In our view, stigma needs to be understood as arising from long historical attitudes to mental illness.
Just as we need to understand the biography of a person with dementia in order to be able to understand the way they are now, we also need to know about our own professional biography. We therefore briefly examine the history of the way in which people with dementia have been cared for in our society.
This is a book about knowledge, ideas, skills and expertise for social workers. However, in order to understand our task we have to understand the context in which we work. Demography is a very important part of the context. All developed countries have rapidly ageing populations, which means that dementia, which is so closely linked to age, may be called the key health issue for the 21st century. We discuss demographics and then take a medical approach to dementia, which social workers need to understand. We include a special section on alcohol-related brain damage (ARBD) because social workers will be working increasingly with people with this condition.
Over 750,000 older people in the UK have a diagnosis of dementia. Using population figures for 1996, this can be broken down as shown in Table 2.1.
The primary risk factor for dementia is age. As social workers, we need to be aware, therefore, that demography is a key factor in our field because it affects both current services and future planning.
There is a great deal of research in progress looking at risk factors such as family history, diet, stress and head trauma (Gow and Gilhooly, 2003). So far it is inconclusive although it is clear that the risk factors for vascular dementia are related to those for other vascular problems, like smoking, poor diet and little exercise. There is increasing attention to the possibility that there is a vascular component to all dementias (Snowden, 2001).
A large study published in 2004 compared prevalence rates in nine Organisation for Economic Co-operation and Development (OECD) countries – Australia, Canada, England and Wales, France, Germany, Japan, Spain, Sweden and the US.
Therapy may seem to be an odd word to use in a book about people with dementia and their carers, but its use is quite deliberate. We are in the midst of an intensely exciting phase in dementia care in relation to therapy. In this chapter we examine the different therapeutic approaches that have been developed in recent decades. We are very much addressing the social approach to dementia in this chapter, mentioning only briefly the medical intervention of drugs. Understanding behaviour that others find difficult, is discussed in this context. We consider various factors, both internal and external, which impact on the person with dementia.
We look briefly at a selection of therapeutic approaches, including activities, counselling, the creative arts and complementary therapies. Social workers need to be knowledgeable about interventions even though we may not often be able to implement them ourselves. We need to be able to advise and assist colleagues and carers, and we may need to specify certain interventions in care plans.
The word ‘therapy’ speaks of a potential growth and change in all of us, even if we have dementia, so it is used to underline the positive nature of working with people with dementia. It is also used because all sorts of new therapies are emerging. Some people are using the word to mean that everything we do can make people better. We can, for example, as we have seen in Chapter Seven, design buildings that are therapeutic: buildings that enable people rather than disable them.
This chapter considers the crucial skills of assessment, which apply equally to reassessment and review. We have assumed that readers will have a basic knowledge of them and that what is needed here is a discussion of the additional issues that relate to dementia care. We have struggled to provide generally applicable information and guidance because of the considerable differences between the countries of the UK and between individual local authorities within them. We mention diagnosis again since it is an essential first step in assessment. We are very committed to shared assessments but we also provide some views on when social workers should be the lead professional. We comment on the use of forms and protocols. Naturally there is input on protection, rights and risk. We comment briefly on care management and multiple providers and provide some thoughts on admission to long-term care. The chapter concludes with a section on income maximisation, which, although not always carried out by social workers, is very important.
The importance of a good diagnosis is a recurring theme of this book and is mentioned again here because it is an integral part of assessment, indeed some local authorities require it from the GP or consultant in order for people to access services. For social workers the issue is how to ensure that this is done. A GP skilled in dementia will be able to make a diagnosis for most people. She or he should take a good history from the patient and other informants, to obtain evidence of cognitive impairment and to rule out other diagnoses.
Communication is central to the development of a truly person-centred approach to dementia care. In this chapter we consider four main aspects of communication – communication with:
people with dementia;
Written communication and advocacy are important issues that we also examine in this chapter. Communication is one of the most exciting areas of dementia care in which new developments are happening at a rapid pace.
Even as late as the 1980s it was generally thought that most people with dementia talked nonsense as a result of their brain damage. We have come a long way since then. We are now confident that it is possible to communicate with most people with dementia (Goldsmith, 1996) although we are still learning the necessary skills. Enabling people to share their wishes and preferences with us is perhaps the most urgent need, but, increasingly, the possibility of therapeutic communication is being recognised.
We have, in this book, tended to avoid talking about the stages of dementia because it can condition expectations, but we need to address the communication needs of people with different degrees of impairment. We have always to bear in mind that people with dementia have good days and bad days or even good mornings and bad mornings. As we have emphasised, there are a whole set of factors affecting their competence, some of which could be suboptimal at any time. Given that the same person with dementia can be impaired to different degrees at different times, we will look at three different degrees of impairment.
Every person experiences dementia in a unique way. In this chapter we look at some universal emotional needs, the meeting of which is often compromised by dementia. We consider the person relating to different factors, which determine what the experience will mean to them, an approach known as the social or disability model of care. The various factors interact with each other and we explore two of them in some detail – general physical health and the way in which people with dementia are treated by others. We also look briefly at four areas of life that are still considered taboos where people with dementia are concerned: sex and sexuality, spirituality, death and dying and social class. Finally we explore some of the difficult dilemmas faced by social workers in the field, suggesting that a conflict resolution approach can be useful.
The foundation of the person-centred approach to care is the belief that all human beings are of equal value and therefore people with dementia are no less valuable than anyone else. A person is much more than their disability. We have already referred at some length to the writings of Kitwood because we believe that he was able to express coherently a lot of really crucial thinking about dementia. His work drew upon his background in the church, social psychology, psychotherapy and his work with people with dementia. We can all think of situations in which people with dementia have their personhood denied by those around them. It is alarmingly easy to do this.
First, some words about the title of this book. Clearly, we wanted to say that this is a book about social work and people with dementia. We would like to have said ‘and their carers’ because social work is substantially about working with families and relationships, but this would have been too long. Our subtitle consists of three words which we think further clarify what this book is about. Partnerships because we expect social workers to see the person with dementia, as well as carers and colleagues, as partners in a shared endeavour where possible; practice because this is primarily a book about practice and it is full of accounts of practice; and persistence because we believe that this is an essential quality of work in this field. It is not a quick fix type of social work. Ageism and stigma beset this field and social workers need to be really persistent to ensure that the best social work is provided.
This book is written by social workers for social workers. We have written it with four groups in mind although we hope it is useful to any social worker working with people with dementia:
social work students;
social workers doing post-registration training and learning;
social workers transferring into dementia care from another field;
social workers in the field of registration and inspection.
Although much of what we cover is appropriate for social workers in any country, we have had to include a lot of British policy and legal material because so much social work is specific to the context in which we work.