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Social Work Practice with People with Dementia
Peter Scourfield
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eBook - ePub
Social Work Practice with People with Dementia
Peter Scourfield
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About This Book
Social Work Practice with People with Dementia critically discusses the cultural and discursive contexts in which social work with dementia takes place.
This is because how we think about dementia influences how we treat people living with the condition. The book also explains the demographic context that has made dementia a global public health priority in recent years. The different forms of dementia are discussed in a way that is accessible to a non-medical readership. The book discusses the different settings and circumstances in which social work with people with dementia and their carers takes place and examines the chief elements of the social work role. In doing this, it explains the professional knowledge, skills and values that social workers need in order to practice effectively in this area of growing importance. Part of this is appreciating how approaches to dementia care have evolved over time. In this context, the book discusses how the dominant bio-medical model has been challenged by person-centred and rights-based approaches. As a key part of social work is to offer people choices, the book provides information about a wide range of health, social care and other services that are available, whilst also highlighting the gaps that exist for different groups and in different areas. Case studies and activities help the reader apply theory to practice.
Social Work Practice with People with Dementia will be of particular interest to social work students and early career social workers, primarily in a UK context. However, it contains much relevant information about dementia and dementia practice for anyone involved with adult health and social care both in the UK and around the world.
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1Thinking about dementia
DOI: 10.4324/9781003191667-2
By the end of this chapter, you should have an understanding of:
- Common ideas and myths about dementia.
- Common definitions of dementia.
- Your own thoughts and feelings and ideas about dementia and where these originate.
- Representations and constructions of dementia in everyday and professional discourses.
- How the way people think and feel about dementia affects their attitudes to people living with dementia, which, in turn, affects the ways in which they interact with them.
- The appropriate language to use when thinking about and interacting with people living with dementia.
Thinking and feeling about dementia
It is assumed in this chapter that readers will not be coming to the subject of dementia in a completely ‘neutral’ frame of mind. Readers are almost certain to have some pre-existing ideas of what dementia is. They are, as a consequence, almost certain to have their own thoughts and feelings about dementia. An interesting question is where do those ideas and feelings come from? Our understanding of, feelings about and attitudes to a subject like dementia are shaped by a mixture of things. As well as the social, cultural and discursive contexts in which we live, the mixture will include our own personal and professional experiences and, where relevant, previous education and training. How we know, understand, think and feel about dementia will inevitably influence how we behave when we meet situations that involve some form of dementia (Sabat, 2001; Downs, Clare and Mackenzie, 2006). It is therefore a useful starting point to first examine the state of our own knowledge, to consider where this knowledge comes from and, equally importantly, what thoughts and feelings we have about dementia.
Activity 1.1
- What would you say dementia is?
- Where does your current knowledge about dementia come from?
- What are your feelings about dementia? Give reasons.
Obviously different people will have different responses to all three questions, and, if possible, it would be interesting to share your responses with others. The more responses are shared it would probably become apparent that, whilst it might be possible to arrive at a broadly acceptable definition of dementia, our own experiences of dementia and sources of knowledge about it vary considerably, as will our feelings about it. In common with professional social work more generally, learning about how to practise social work with people living with dementia requires us to be able to reflect critically about what prior knowledge, preconceptions and, possibly unrecognised, prejudices and feelings we are bringing to such study and therefore to our practice (Mantell and Scragg, 2019; Thompson and Thompson, 2018).
Around the year 2000, a nursing colleague shared with me the reviews that he had received from a research paper that he had submitted for publication in a peer-reviewed nursing journal. The subject was a discussion of the positive role that hope could play in the nursing care of people with Alzheimer’s disease. My colleague’s paper was in a tradition, gaining popularity at that time, of studying the effect that promoting ‘hope’ can have across a range of nursing situations with chronically ill patients and their carers (Cutcliffe and Herth, 2002). Of the two anonymous reviews received, one was broadly supportive of the paper’s publication, believing that it could make a valuable contribution to dementia care. The other reviewer said, in terms, that, from their personal experience, Alzheimer’s was a dehumanizing and soul-destroying disease that gradually and eventually robs the sufferer of everything that makes them who they were. In recommending that the paper not be published, they added that, until a reliable cure was found, it was a preposterous waste of time talking about such vague ideas as ‘hope’.
I include this anecdote because it made a powerful impact on me at the time and still does. It not only illustrated graphically the strong emotional effect that a form of dementia like Alzheimer’s disease can have on those who are close to it, but it also illustrated how someone’s personal experiences inevitably shape their outlook on a particular subject. In this instance, the knowledge about Alzheimer’s gained from the reviewer’s personal experience was elevated above the knowledge expressed in a body of academic literature or research studies. Whether it affected their practice as a practitioner or teacher is unknown. However, it can be assumed that it probably must have in some way. The point of the anecdote is that a subject like dementia has emotional resonance for most people, often based on their experiences and prior knowledge from different sources, sometimes even if that knowledge is second or third hand. It is therefore a complex and often difficult subject. It is useful to try to identify how we ‘know’ what we do about dementia and also why we have the attitudes we have towards it, in order that we can keep an open mind, maintain a sense of perspective and practise with the appropriate professional detachment. As always in social work, a commitment to reflective practice is essential in this respect (Mantell and Scragg, 2019; Thompson and Thompson, 2018).
Defining dementia
It is commonly stated that dementia is best described as an ‘umbrella term’ referring to different conditions that affect the brain and which get progressively worse over time (SCIE, n.d.). As the National Health Service (NHS) website says:
Dementia is not a single illness, but a group of symptoms caused by damage to the brain.
It further explains that:
Dementia is not a disease itself. It’s a collection of symptoms that result from damage to the brain caused by different diseases, such as Alzheimer’s. These symptoms vary according to the part of the brain that is damaged. NHS website.(www.nhs.uk/conditions/dementia)
The Alzheimer’s Society explains:
Dementia is the name for a set of symptoms that includes memory loss and difficulties with thinking, problem-solving or language. Dementia develops when the brain is damaged by diseases, including Alzheimer’s disease.(www.alzheimers.org.uk)
Using a slightly different emphasis, Stephan and Brayne (2014) state that:
The term ‘dementia’ defines a group of syndromes characterized by progressive decline in cognition of sufficient severity to interfere with social and/or occupational functioning, often associated with increasing age.(p. 4)
There are other definitions of dementia in circulation, all broadly similar, but these can be used as a useful starting off point. Dementia should therefore not be regarded as a single disease or illness. It refers to a range of conditions and syndromes where brain functions are lost and where there is an ongoing decline in different cognitive abilities. In medical terms, it would be defined as ‘neurodegenerative’, which is a way of saying that the brain cells die or stop working, leading to the various functions controlled by the brain – cognition, memory, motor and social skills and so on – becoming lost or impaired in some way.
Some people use the term dementia and Alzheimer’s disease interchangeably or believe that Alzheimer’s disease is the medical name for dementia. As the definitions make clear and as will be covered in more depth in Chapter 2, Alzheimer’s is a specific disease that damages the brain, but it is only one cause of dementia. The other point to make is that dementia is often used interchangeably with the term ‘senile dementia’ or often just ‘senile’ (referring to old age). However, dementia should not be automatically associated with ageing or old age as young people can develop different forms of dementia. Some mental decline happens as we grow older, but the more severe signs and symptoms outlined in the quoted definitions are not an inevitable part of the normal ageing process.
Early origins of the term
The term dementia itself derives from the Latin demens or de mentia (which literally means being out of one’s mind) and has actually been in circulation with that broad meaning for centuries. For many centuries, disorders like dementia have been seen variously as a sign of possession either by demons or other spirits, as the result of some curse or as a punishment from God for having sinned. Responses, therefore, were either to try to exorcise the demons from the ‘victim’ by beating them or through other methods or else place the person under restraint for their own good and for the good of others (Porter, 2003). The term dementia became evident in medical discourse from the beginning of the 19th century. The first specific reference to dementia as a mental illness was in a psychiatry text by the French physician Phillipe Pinel (Lyman, 1989). During the 19th century, the most common approach towards ‘treating’ mental illness in the United Kingdom was through confinement and segregation in asylums (Porter, 2003). At this time, ‘dementia’, along with ‘idiocy’, ‘mania’ and ‘melancholia’ was a common ‘diagnosis’ for admission to a mental asylum. Mental asylums varied in their approach. Some doctors, such as Pinel and the Quaker philanthropist William Tuke in England, were pioneering ‘moral treatment’ and a policy of non-restraint. However, throughout most of the 18th and 19th centuries, people regarded as seriously demented could expect to be placed in some form of confinement and restrained using straitjackets, chains or other physically restrictive measures for their own safety and for the safety of staff and other inmates (Porter, 2003).
Echoes of the past in the present
As stated earlier, our understanding of and thoughts and feelings about dementia probably derive from a range of sources and experiences – some more obvious to us than others. In Britain today, and around the world, ‘dementia’, like cancer, is a word that currently has a lot of emotional charge to it and many negative connotations. Whilst this might be related to personal experiences, certain representations of dementia are so deeply rooted and powerful that they live long in the collective memory. Disturbing and graphic images from the history of people labelled as demented being incarcerated and placed in physical restraints are hard to eradicate completely. Such depictions can be seen today in art galleries. It is not unreasonable to suggest that, fuelled by certain representations in the media, historic attitudes towards dementia continue to have a lingering influence, at some level, towards how we approach the topic of dementia today. To some extent, it might be related to the very term ‘dementia’ itself. Its pre-modern origins and the crude, generalising and damning way in which it was used to label people in the past, have prompted some to argue that we should stop using it as a label today (Corner, 2017). However, the fact is the term continues to be in wide circulation, including official policy documents and medical texts. This will no doubt continue, despite the historical baggage it carries, until something more appropriate is found to replace it. However, the language in which we talk about dementia is important and this will be discussed in more detail later in the chapter.
Many studies have emerged which have analysed how dementia has been socially constructed in different ways over the years (e.g. Harding and Palfrey, 1997). From these, it is apparent that the images, tropes and associations that have been variously used to characterise and construct dementia have deep historical, social, cultural and psychological roots and have almost always been negative. Examining the language and imagery used around dementia reveals a lot about both our attitudes towards and fears about dementia and the people who are living with it. Deconstructing dementia discourses is therefore useful because it can help us better understand the social, emotional and psychological reactions that dementia provokes both in us and others.
Stigma
The ways that dementia has been represented in different discourses have both reflected and reinforced negative attitudes and feelings about dementia and, as a consequence, stigmatised the people living with it. Here, stigma is taken to mean the ‘process whereby certain individuals and groups are unjustifiably rendered shameful, excluded and discriminated against’ (Benbow and Jolley, 2012: 165). It also refers to the process whereby someone with dementia feels ‘shame about themselves; that they are ‘less of a person’ because of the symptoms of dementia’ (Swaffer, 2014: 709). This process is often referred to as self- or internalised stigma. So there are external and internal dimensions to the stigmatisation of dementia that are interconnected. If we are treated in a negative way by others, with, for example, disgust or pity, then this will most probably have a negative impact on the way in which we see ourselves and damage our sense of self-worth. This process whereby we internalise stigma leads to what Goffman (1963) called a ‘spoiled identity’. Fletcher (2019) makes an interesting ...