Life Story Work with People with Dementia

Ordinary Lives, Extraordinary People

Polly Kaiser, Ruth Eley

• Publisher: Jessica Kingsley Publishers
• Year: 2016
• ISBN:
  9780857009142
• Topic: Sozialwissenschaften
• Subtopic: Gerontologie

Introducing life story work, a way for people with dementia to connect with their relatives, carers and the professionals working with them. This evidence-based book explains the many benefits of life story work, with practical guidance for introducing it in a variety of settings.

The authors show how life story work can empower people with dementia to inform care practitioners and family members what care and support they may need now and in the future, by taking into account their past and their future wishes and aspirations. The book includes practical information on how to get started, ethical considerations such as consent and confidentiality, and considers issues of diversity and how to address them. The voices of practitioners, researchers and family carers sit alongside those of people living with dementia to present a wide-range of perspectives on life story work.

Part 1

Where Has Life Story Work Come From?

The Context of Life Story Work

1

Narrative Approaches to Life Story Work

Polly Kaiser

A man is always a teller of stories, he lives surrounded by his own stories and those of other people, he sees everything that happens to him in terms of these stories and he tries to live his life as if he were recounting it.

J. P. Sartre, Nausea (1936, p.61)

I have had such an interesting life…if only I could remember it.

‘Elsie’, interviewed in 1985

Introduction

These quotations reveal some of the paradoxes of life story work. Elsie may well have valued a life story book that could help her to remember some of the facts and chronology of her life. Even without that she would be living her life through the stories she told herself. The challenge is knowing what these stories are and how they might be helpful. What was important to Elsie was that she had an ‘interesting life’. It has been acknowledged for a long time now that reminiscence and putting one’s life in perspective are normal and valuable activities of old age (Butler 1963; Erikson 1997).

My experience of meeting Janine

Before I knew what was happening I was ushered into ‘Janine’s’ apartment, an elderly woman with dementia – I was told to sit and wait for her daughter whilst the carers got her ready. I was a researcher – 24 years old in Lyon, France. I am not sure who was more startled, me or Janine! She was being lifted from her bed by a hoist. The carers did not look at her, speak with her or reassure her…she could have been a sack of potatoes… She had a look of utter terror in her eyes that seemed to say ‘Help me!’ ‘What is going on?’… I knew I should not have been there to see her in such an undignified state. When they were done I wasn’t sure what to do. Janine could not speak. I sat with her. We held hands…and waited for her daughter to arrive.

The carers did not know her and they did not seem to want to know her. What did she need? She needed to feel safe, to have them speak with her in a kindly way, to be valued and noticed, her hand held …she needed comfort, connection and kindness.

My motivation for life story work comes from stories like these and others in my career: the importance of treating people well, for ‘seldom heard voices’ (Robson et al. 2008) to be heard so that a person can be supported in the choices they wish to make to keep them well: to support what Tom Kitwood would call ‘personhood’. He defined this as ‘a standing or status that is bestowed upon one human being by others in the context of relationship and social being. It implies recognition, respect and trust’ (Kitwood 1997, p.8). The key phrase here is ‘in the context of relationship and social beings’. How can we do this?

We need to know the people we work with, and life story work is a central part of this endeavour. ‘You never really understand a person until you consider things from his point of view.’ (Lee, H. p.30)

Reflection points

•Can you think of a time when you did not feel listened to? How did that make you feel?

•Can you bring to mind a person you have worked with who you wished you had known better?

•What difference would knowing more about their life have made?

Principles

The principles and philosophy that have shaped the development of life story work for me have a number of roots. First, are my undergraduate lectures in social psychology by John Shotter and reading Ken Gergen (1973), who talked about social constructionism and the evolving nature of psychological ideas in history. Second, came the ideas of person-centred care as espoused by Tom Kitwood. These were such a breath of fresh air when he gave me a copy of his manuscript of Person to Person (Kitwood and Bredin1992) to read when I first qualified as a psychologist. Finally, there was my training in narrative therapy with Hugh Fox and workshops with Michael White and others. These form part of my story and my relationship to life story work and provide the background to its principles. First, I will define some terms and then illustrate the principles.

Social constructionism

Social constructionism is a sociological theory (Berger and Luckman 1966) that places great emphasis on everyday interactions between people and the way we use language to understand our reality (Anderson 2012). One person’s understanding shapes another’s; we do not develop in isolation. We develop shared meaning and understandings in relationship with each other. Think about how a mother looks at her infant and how a child begins to understand their environment through verbal and non-verbal communication. These meanings and practices become ‘taken for granted’ realities we learn about the rules of our particular culture and the ‘way things are done’. As we shall see, these realities are socially constructed and change over time.

Kitwood and person-centred care

Tom Kitwood has been a huge influence for many. He said that the aim of good dementia care is to ‘maintain personhood in the face of failing mental powers’ (1997, p.20). Besides the neurological impairment that accompanies dementia there are numerous factors that affect the experience of a person with a diagnosis, such as their physical health, their own biography and personality, and the social environment they are in (Brooker 2007; Kitwood 1997). The environment around a person can be disabling, as Kitwood described in his observations of what he termed ‘Malignant Social Psychology’, such as when people with dementia are intimidated, outpaced, not responded to, infantilised, labelled, disparaged, blamed, overpowered, stigmatised or ignored (Kitwood 1997). Shotter (2009) talks about the importance of how we listen to one another and of listening well.

Narrative practices

Narrative practices and therapy have developed as ways of putting ideas from social constructionism into practice (Morgan 2000; White and Epstein 1990). Narrative approaches seek to be respectful and non-blaming. They centre people as the experts in their own lives. A narrative approach is one that ‘views problems as separate from people and assumes people have many skills, competencies, beliefs, values, commitments and abilities that will assist them to reduce the influence of problems in their lives’ (Morgan 2000, p2). Narrative approaches include practices such as ‘outsider witness’ and re-membering practices. Outsider witness is a particular form of speaking, listening and being heard, used as part of narrative practices (Fox, Tench and Tench 2002). It derived from Barbara Myerhoff’s (1982) innovative work, which influenced Michael White (2000) and others in considering how a supportive group ‘sustains a sense of identity in a potentially alienating environment’ (Claire 2009, p.3). It offers a structure of telling, listening and retelling and has been used not just in training for professionals but also in the Family Carers Matter training described by Jean Tottie in Chapter 8. Re-membering practices (Hedtke 2003; White 1988) are described in more detail in Chapter 15.

I will now explore the general principles behind the narrative approach (Fox 2003).

The stories of people’s lives are socially constructed

Stories are of a time and place (Gergen 1973). The story of dementia is socially constructed and this is changing dramatically over time. We may take for granted the idea that person-centred care that honours the personhood of someone with a dementia has always been with us, but it is easy to forget that the term ‘person-centred care’ was coined by Tom Kitwood only in the late 1980s; it was not until 1997 that he published his seminal book Dementia Reconsidered (Kitwood 1997). Other practitioners, such as Bob Woods and many others, were promoting psychosocial interventions (e.g. Brooker 2007; Downs 1997; Keady and Nolan 1994; Stokes and Goudie 1990) as part of what Keady has since referred to as ‘the person centred care movement’ (Keady, Williams and Hughes-Roberts 2007). The idea that people with a dementia could lead fulfilling lives was radical at that time, so much so that in the early 1990s I remember being warned off Tom and his then ‘new-fangled’ ideas!

The dominance of the biological discourse around dementia was, and still is, very persistent. There was a huge struggle to introduce psychosocial ideas into the realm of dementia care. Even as Kitwood’s work was emerging, there was strong scepticism that therapy was possible with someone with a dementia; thankfully this ‘taken for granted’ idea is being laid to rest (e.g. Cheston 1998; Guss et al. 2014; Woods 1996).

Despite the changing language and approaches to dementia care there is still a challenge about how to ‘do’ person-centred care in practice. This is being addressed by people like Dawn Brooker at the Worcester Association of Dementia Studies1 and Murna Downs at the Bradford Dementia Centre.2 Knowing the person is central to the concept of person-centred care and life story work is just one tool to help to put the principles into practice.

Life story itself is a socially constructed idea and it will be interesting to see new evidence and ideas in this area emerge to challenge further what we understand life story work to be and how it is put into practice. This book is bringing together our current knowledge in the field in one place for the first time, including the voice of people with dementia themselves.

The stories of people themselves are helping to shape how dementia is viewed. ‘Living well with dementia’ was a term coined by Peter Ashley, who had dementia and was a member of the external reference group for the English National Dementia Strategy (DH 2009a). He wanted to give the message that people could still live well with a diagnosis. My Name is Not Dementia (Alzheimer’s Society 2010) gives another strong statement that people are more than the label of their illness. Stigma is continuing to be challenged. The Dementia Engagement and Empowerment Project (DEEP), funded by the Joseph Rowntree Foundation, is a collaboration between the Mental Health Foundation3 and Innovations in Dementia.4 It is a network of groups and projects led by or actively involving people with dementia and is growing from strength to strength.

‘On Our Radar – Dementia Diaries’ is a UK-wide project that brings together people’s diverse experiences of living with dementia as a series of audio diaries. They are recorded on special handsets that are linked to a dedicated voicemail and are automatically sent to the editorial team at On Our Radar. The team listen, transcribe and curate it for publication.5 Paul Myles, editorial manager, explains that ‘a...