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Fundamental Aspects of Caring for the Person with Dementia
Quay books, July 2006, Pages: 160
Read this book with the aim of seeing the perspective of the person who has been labelled as suffering with dementia, and of the carers and professionals. Try to ‘imagine’ how it feels to be the other party (or indeed any of them) and then reconsider your contribution to the problems that you or they are faced with.
The book is split into two parts to help you identify the parts you need to read at different times or for varying purposes. Part 1 offers information and debate about the theoretical issues and explanations of dementia and memory loss.
Themes throughout the book include explanations of what dementia actually is and where it comes from in the first place. There are differing theories on this, and Chapter 2 establishes a basic explanation of the generally accepted definitions of dementia and its source. Learning about this helps us to understand a background to a very confusing and emotionally traumatic experience. This capacity to comprehend a little of what is going on for the person with dementia (sufferer) and the carer (professional and non-professional) can assist with developing an ability to adapt and cope with its effects, as well as influencing our reactions to the problems encountered.
Chapter 3 takes the reader into the area of finding out what people with dementia and memory problems need and want. It also considers the carer’s perspective and the use of a holistic approach to caring. This involves the capacity to look at more than just a disease or any other single issue and consider the person and people involved in all aspects of their lives. Nurses, doctors, social workers, home support workers, voluntary organisation support workers, occupational therapists, physiotherapists and many more professionals are involved in caring for people with these problems, and the approaches that are discussed here in terms of assessment can be utilised by any of them with appropriate training and experience.
Fundamental aspects of caring for the person with dementia
Establishing what the sufferer and carer need is most effective when led by an assessment strategy. This approach, however, will often be socially defined and based in cultural belief. Whilst this is not necessarily a bad thing, it does restrict people and the choices they are able to make about their own destiny. A move towards more collaborative care approaches has meant that there has been a development in this area: helping people to live with dementia and memory problems as defined by them, rather than by the professional body and society controlling the person and their care, is the new culture in care and support.
Chapter 4 explains why this book was written in the way it was. The professional, political and ethical perspectives of care are discussed and given a background in an effort to explain the motivation of services and their ultimate goals. The interview transcripts are produced as a result of the vital collation of insight from carers and sufferers already living with dementia. This approach was taken to offer the reader insightful, understandable and practical guidance from reality to balance the professional research-based evidence of care.
Part 2 moves on to the more practical side of things. Many areas of concern for carers and professionals alike are similar. However, the experience of the problems will vary as each is influenced by the individual perspective. The reaction to problems or to living with dementia depends on this belief system. So the person with dementia or memory problems and the professional or non-professional carer can only bring their ideas and perspectives together to be able to benefit from each other.
The chapters in Part 2 consider the impact of the issues identified through the interviews as the most prominent areas. The carer’s perspective is considered in conjunction with the sufferer’s and a perspective on coping skills is offered. This expert teaching by those living with these problems is enhanced by evidence and research intermittently, but essentially is aimed at a combined approach of non-professional and professional carers using their own expertise to create quality care. All the text following is based on the assumption that this is a useful collaboration and that the learning points - ‘How can we help ourselves and each other?’ - are meant for professionals and non-professionals alike. All of the quoted text comes from the comments made by the respondents in Chapter 4. In this part they are broken down into themes and considered in more depth.
Chapter 5 begins with the psychological and emotional issues associated with dementia and memory loss. Identified areas of concern focus on the fear of dementia, personality changes, change in relationships, carer stress, and safety or rational risk.
Chapter 6 considers the support needed by carers and the support which can be offered by professionals. It introduces some legal concepts and issues, which services are generally available and the use of a collaborative approach to areas such as younger people with these problems. The use of medication and technology is also addressed as a support strategy and ends with a list of agencies actively engaged in supporting people with memory problems and dementia and their carers.
Chapter 7 begins to consider the day-to-day problems of life with dementia and memory loss. The loss of the ability to communicate and function in activities which were once commonplace can be very distressing and difficult to accommodate. The chapter looks at household tasks and how to deal with loss of skill whilst balancing the need to maintain ability and dignity with safety. The personal care abilities of an individual are very seriously affected by memory loss and are included here to demonstrate this as well as to show the ways in which self-care skills - hygiene, sleep, using the toilet, eating and drinking, preventing skin damage and monitoring pain - can be part of the daily routine. Social lives often fall victim to the disturbing affects of dementia and people find it very awkward to maintain a social life at all. The general principles demonstrated in this chapter can help to ensure that people with dementia and carers are aware that this option is not automatically closed down.
The final chapter discusses thinking and the effect that disturbances like memory loss and dementia can have on a person’s ability to continue with their normal intellectual processes in daily life. Communication is affected and the chapter offers some insight into understanding what this means for the individual. Examples of the use of therapeutic approaches indicate how to cope with these problems and include descriptions of the use of approaches such as validation therapy, resolution therapy, positive person work and psychosocial interventions, as well as other well-known interventions used by professionals. The context of the writing is not to teach the person to be a therapist, but simply to identify and explore the potential use of these and their underlying philosophies of care in the approach offered by the carer.
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