Dementia

An Attachment Approach

Kate White, Angela Cotter, Hazel Leventhal, Kate White, Angela Cotter, Hazel Leventhal

• Publisher: Routledge
• Year: 2018
• ISBN:
  9780429830846
• Edition: 1
• Topic: Psychologie
• Subtopic: Psychoanalyse

This interdisciplinary book offers a relational perspective to dementia care drawing on attachment theory and practice. Relevant to professionals and the general public alike, it brings together innovative research and practice in psychotherapy and the creative arts with the lived experience of being a carer. Indeed, the book includes insights from professional and personal experience throughout. It also provides exclusive access to Josh Appignanesi's short film, Ex Memoria, about his grandmother's experience of dementia, poignantly portrayed by Sara Kestelman. Chapters include the experience of caring for a sister with dementia; the importance of an attachment perspective in theory and practice; a new approach to understanding the possible origins of dementia in trauma; contemporary understandings from clinical and research arenas; the description of a leading-edge project providing psychotherapeutic work; and an innovative creative arts and reminiscence European-wide family intervention for those living with dementia.

Written in accessible language, Dementia: An Attachment Approach will be of great interest to people living with dementia, as well as those working with, and caring for, people with dementia in a variety of contexts including nurses, doctors and psychiatrists, clinical and counselling psychologists, social workers, health and social care workers, family carers andpsychotherapists, as well as creative arts practitioners and policymakers.

Chapter 1
Introduction

Setting the scene

Angela Cotter

Following the success of our conference I am delighted to be giving you an overview of the conference papers and the additional material we have decided to include. This monograph brings together much of my previous experience both personal and professional and this chapter includes some reflections on this. The book’s interdisciplinary focus is enriching and enlightening. However, before introducing the chapters, I want to highlight an overall issue that I feel deserves putting on the agenda from the start.

As I wrote at the time of the Conference:

It is the day before the conference and I am full of my usual trepidation and confusion when I am due to give a paper about memory loss and/or dementia. I do a last-minute search for my books, and for literature and other resources to support me and cannot find them. Then I find them in the place where they should have been first of all. This is not uncommon especially as I have grown older and have more resources to file and search for. However, what is unusual is my anxiety and fear that I shall have lost everything and so will not be able to give the paper – that although I have been working on this introduction over the weeks I shall find I have nothing to draw on today. The prospect of today fills me with dread because I seem to have said everything before, and had better words before too. Then in a search for distraction I look at a piece of creative writing I wrote about my being a fool in the land of the wise and cannot understand a contrived riddle in it. Who wrote this? Was it me?

What is going on? Back in the early 1990s I was involved in a British Psychological Society conference about psychotherapy and dementia. It was probably one of the first. Valerie Sinason gave a keynote paper in which she spoke about her own counter-transference to the subject – her own reactions – being enacted in her fearing she had lost the details of where the conference was going to be held in Birmingham and on top of that had lost contact details for the group of organisers. Our own reactions to the subject often mirror the possible experience of the person with dementia. And this is not surprising - dementia is very frightening, apparently confronting us with the prospect of “losing our brain” (Sinason, 1992), “our mind” (Sutton, 1994) or “the loss of what makes us uniquely human” (Kaplan, 1990). This makes us anxious. According to an Alzheimer’s Research Trust YouGov poll conducted in 2015 (which you will find if you do a search on the Alzheimer’s Society website) 52 percent of people over 60 cite Alzheimer’s Disease as one of their top three concerns about being in the later years of life. An Alzheimer’s Society survey in 2008 also showed that half of all Uof all UK adults believe that dementia remains a condition plagued by stigma.

We chose to give the conference the title “Attachment, Memory Loss and Ageing” because memory loss is sometimes, and sometimes not, an antecedent to dementia and something that touches many of us in our experience of ageing. It is a way in to talking about dementia. I rather suspect that memory loss touches many of us whatever age we are but we may become more sensitised to it – more aware of it – as we age. In an over-cognitive society, the fear of losing our cognitive capacities, of not knowing, of maybe therefore being seen as foolish and shamed because of this can be terrifying. There is the accompanying fear of being seen as “useless”, and no longer being sure who I am because what defines me – what constitutes my identity in this society – is often rather more concerned with what I do than who I am – what I produce rather than how human I am as a being or how “being” I am as a human. Arguably, our society also values independence rather than interdependence; chases after perfection and is intolerant of imperfection. Yet the reality is that we all live in a very dependent society – for example, how long would many of us last if the supermarket supplies were cut off for an extended time? And increasingly we hear that it is recognition of our imperfections that leads to change and transformation. A central strand of Jung’s (1951/1966, p. 116) “wounded healer” concept is that the healer has to recognise their own quintessential woundedness (i.e. the woundedness that belongs to all of us by virtue of being human) to allow the patient (i.e. the one in the place of being wounded) to be able to contact their own healer within. If the healer cannot do this, the relationship has no place to go and becomes one of power over rather than empowerment. Or as Brene Brown (2010a, 2010b) puts it, she of the TED talk that has received over five million hits, recognition of their vulnerability is a key characteristic of those who lead whole-hearted lives.

That is the good news. However, in this society, it can be very hard for us to recognise our vulnerability. I suggest that we still want to be perfect (and much of our standard setting culture implies that we can be) and we often have fiercely critical inner voices that shame us when we do not measure up. In this context, the opportunity for projection onto people with memory loss and dementia is rife. When I first worked in the NHS as a nurse, it was not uncommon to hear stereotyping of people with dementia as not “sensible”, because the staff could not follow the words they said. They were also seen as not understanding anything because of their confusion and consigned often to a world of being talked over and about rather than to. There has been much work to address these issues since then and some incredibly heart-warming and innovative work, as we can see in this monograph, but it would not be surprising if some of those attitudes still lurk in staff in poorly paid situations, with little training and no framework for understanding dementia. Isabel Menzies-Lyth’s (1959) paper about the functioning of social systems as a defence against anxiety still holds true. The depersonalisation of patients and task orientation of the staff defends them against the traumatic situations they encounter in their work, where being open day after day can be too painful without support and encouragement. And these attitudes may not only be in staff but also in individuals in society too.

What is the alternative? Firstly, there is a need for a greater awareness of the issues, and this book, based on the conference papers, is intended to address that. We made the decision to revise the title to Dementia: An Attachment Approach to be clearer and more direct. Secondly, we need to dispel some of the myths in relation to people with dementia in particular. In my work with people with advanced dementia of different kinds I have found that the fault in not understanding – in seeing them as not sensible – lies rather more often in me than in them. I will give some examples. There is a tendency for people with dementia to talk metaphorically rather than factually. Therefore in many of the interviews I have conducted with people with dementia, the range of my understanding is defined by my ability to understand their metaphors or allusions. I recall visiting a participant in a research project for the second time in a care home. I had previously visited in the spring and this was summer a couple of months later. It was difficult to know how to begin the interview. I explained about the project again – that it was about moving from hospital to a care home – and that I wanted to talk with her about what life was like for her now. I said that I had been before in April, to which she said, “April is the cruellest month”. I recognised this as the first line from T. S. Eliot’s “Wasteland” – a poem about memory indeed, recognised as perhaps the greatest modernist poem – but to my mind quite impenetrable. I feel like a bear of little brain when I read it and wish I had a Christopher Robin to hand to help. But I knew the first stanza:

April is the cruellest month, breeding
Lilacs out of the dead land, mixing
Memory and desire, stirring
Dull roots with spring rain.

(Eliot, 1922/1963, p. 63)

What was being said here? On one level, she might just have been free-associating to my mentioning April. But if this were someone in my therapy practice I would assume there was meaning behind the free association. At the time and since, I felt that she was both recognising that we had met in April – and by met I mean connected – and also chiding me for perhaps having woken something up in her that I had not followed through by visiting more regularly and nurturing the symbolic lilacs. Or perhaps she picked up on the fact that I was feeling guilty that as a researcher I did not have a regular and ongoing relationship with her. There are many other possible meanings as well. However, what she said was not senseless but a very economical communication that just might have been very profound. Yet it all hinges on the knowledge of the literary reference.

I have often found that some people with dementia cut right through to the essence of relationship with no holds barred. There can be a truth telling aspect to it that is both challenging and refreshing. It is somewhat akin to the place of the fool in theatre – such as seen in some of Shakespeare’s plays – the fool who is no fool at all – who can speak the truth cutting across all the social conventions and expectations. I have a second story from when I was a NHS nursing home manager to illustrate this point. You have to understand here that I was the most senior person in the home to get the full force of this story. There was a resident with Creutzfeldt-Jakob disease who lived in the home who I will call Nora. It was November 5th. The home as a newly designed unit had a built in conservatory. The staff had set up a firework display and we went down to watch it. I became caught up in the show and the child in me woke up as I said, entranced, “Oh, look at that one, Nora, that’s a pretty one. That’s really lovely.” She looked back at me and said very gently but firmly “And what a silly ass you are!” And then we both fell about laughing in our shared and divine foolishness.

So we need to claim – to own – our own inherent foolishness and vulnerability to hear the voices of people with dementia, and to allow ourselves to be open to expanding our awareness about the subject. Perhaps this is about also connecting with the soul within – the part of the soul that remains intact and profoundly human throughout life. And I suggest we need to be gentle with ourselves about that always and especially as we read these chapters.

At the start of the conference we screened the very moving short film “Ex Memoria” which conveys the experience of someone with dementia in a care home. It really communicates this from the perspective of the person with dementia in the way that it is filmed. The maker of the film, Josh Appignanesi, was not able to come to the conference but Sara Kestelman, who takes the central role, joined us in discussion after the film. She shared with us a poem about her mother, which can be found following Josh’s chapter where he outlines his reflections as the director of the film. This film, funded by the Wellcome Trust, was made for educational purposes and can be downloaded and viewed on the internet at http://vimeo.com/133611676, password: Wellcome. There is I feel much that can be learnt from it about how we can be empathic to the situation of individuals with dementia. We suggest you view this film first, as we did at the beginning of the conference, because we want to place the experience of those living with dementia centre stage.

Sara’s poem is followed by Kate White’s chapter where she writes about “An attachment approach to understanding and living well with dementia”. There is an ever-increasing awareness of the importance of relationship with people with dementia – of a relational perspective – as I hope that I have begun to convey. This has often been presented under the person-centred rubric in terms of counselling and therapy. This is important, but an attachment perspective also has a lot to offer and Kate’s chapter is the first that emphasises its importance, bringing together work on attachment and dementia interwoven with her own experience. It is a heartfelt chapter echoing her vision wrought in experience, a vision that is behind the conference and this book. I have found the slides she presents very useful too, they sum up a great deal in a way that is accessible, as I found out when she presented two at a session for a carers’ group that we facilitated recently. One of the aspects that I feel is tragic here is that those around people with dementia often do not have a framework with which to understand some behaviours that might be described as attachment-seeking such as when someone repeatedly calls out for his or her mother. Further, often when people have very advanced dementia they prefer not to use words at all whether or not they have any impairment of their verbal capacity. For example, a resident in a nursing home, whom I interviewed, spent most of her time staring wordlessly at a carriage clock given to her by her brother, at that time the key or primary attachment figure in her life. This clock accompanied her wherever she went in her institutional chair because the staff had been sensitive enough to let it sit on the attached table. Her silence was hard for me to bear because it was so eloquently painful on a symbolic level but when I did allow myself to relax into it she turned to me with a shy smile that seemed to say it all. It was like she recognised that I had got it. In the jargon, as I understand it, this clock was a transitional object that connected her with her brother and gave her a sense of a secure base – of an internal safe place. Had I not known about the importance of the clock from the staff I would have perhaps understood this differently as being about her watching the clock – in the sense of watching time pass. I might have therefore understood it negatively.

Then we have Susie Henley’s presentation about the contemporary understanding of the aetiology, diagnosis and treatment approaches in relation to dementia, as well as including the support available for people with dementia and where it can be found. The conference organising team included this because we felt that it was very important for us to understand the context and current understanding of memory loss and dementia. Susie makes the point that lack of awareness among the public and professionals, alongside limited resources, remain a barrier to good practice. Her chapter addresses this by providing clear and useful information. This is an essential part of increasing our awareness of the subject.

Following this, Sir Richard Bowlby’s chapter discusses the proposal that the precursors to dementia lie in early trauma. He cites the findings of Jane Sherwood’s pilot research study, which show that the development of dementia in old age appears to be linked to cumulative early loss in the maternal ancestral line. Then he elucidates this thesis by presenting research relevant to the development of dementia in some people and not in others from an attachment and neuroscience perspective, illustrating with examples from his own family tree. This exploration of trauma and the transgenerational transmission of trauma as an antecedent to the development of dementia is a very exciting development in the field which is further explored in the following chapter by Jane Sherwood whose genealogical research is cited by Sir Richard. She presents a strong argument in this chapter to support her conclusion that “the origins of dementia, and ways of intercepting it, may be proving elusive because we have yet to contemplate the possibility that psychology could hold the key that will unlock the complex biological puzzle”. Serious contemplation of this possibility, floated by Tom Kitwood (1997) earlier, is long overdue and it is very heartening to read her justification of the need for it.

It is important here to remember that discussions of dementia have been framed historically very much in terms of it being solely an organic disease, i.e. associated brain changes which can be physically seen and diagnosed. While this is in part true, we are indebted here to the work of Tom Kitwood – a very significant figure in what became known as “the new culture of dementia care” in the 1990s – for his challenge to this concept as a polymath including his being a scientist. His argument was that any diagnosis remains equivocal. As he said in 1997: “All the common forms of neuropathology that are associated with the main dementias are also found in the brains of people who have no cognitive impairment” (Kitwood, 1997, p. 24).

This includes some form of cerebral atrophy. So in his view there is no way that the dementias are an organic disease pure and simple. There are some other factors operating. There is also no consistent correlation between degree of dementia assessed in the living person and the extent of neuropathology found postmortem. The greatest difficulties, however, arise with those people who have been diagnosed with dementia on clinical or neuropsychological criteria but whose brains on post-mortem do not show any signs of dementia beyond what is normal for their age. He cites the highest reported figure in this category in 1997 as being 34 percent. My feeling about this is that it opens the door to looking at psychogenic causes such as trauma. Of course, these may result in brain changes and therefore fit into the organic disease model. The situation is complicated. Kit-wood however also spoke to this when he posited that a form of “rementia” might occur – a repairing of the brain – if people are treated in a way that maximises their personhood. His view was that the malignant social psychology whereby someone with confusion is treated as confused then becomes more confused and so on, needed to be redressed with a focus on really listening to and hearing what the person with dementia was saying – seeing beyond the disease to the person. This, for example, echoes the debates that happened m...