WORKING WITH DEMENTIA
In my experience it is the environment and politics of care spaces that often reflect the inner chaos of the client with Alzheimers disease. The energy in the care spaces can be constantly electric, because of the amount of distress. Not only from the clients, but also the staff, which is a reflection of the clients own state. Often the environment that a client inhabits reflects their inner state.
It has always been the case that caring for the elderly has been seen to be an ordinary job. There is a stigma attached. It used to be the kind of job you have if you couldn’t do anything else. The kind of job you have if you are a working mum. You get little reward. The client group is extreme and the training very limited to public sector services. Anyone can set up a care home. These often reflect bad pay conditions.
Because of the sometimes-poor working conditions staff morale can be low and consequently the clients become marginalized and under-represented. The staff turnover is usually quite high because of self-esteem issues, low pay and lack of support. We used to say this is not a good career move. Workers often get assaulted in this environment. Usually there is a number of agency staff because of shortages and sickness. This interferes with continuity and the client, already confused, has to see many different faces.
Clients in this environment have a profound loss of awareness of self. Often they don’t know where they are or who brought them there. There is a significant level of anxiety juxtaposed with a high level of frustration. This leads to an equally noticeable point of anger that can erupt very quickly, and without warning. Because the intensity of the fragmentation being experienced by the client is unknown, it is an unpredictable situation.
It is common for clients to lash out without warning, bite, and kick and verbally abuse people. This can be caused by fear and may be a consequence of a person’s personality or a consequence of the illness. It is often said that, “my mother has always been very quiet”. And then Mother is seen to be exhibiting extreme behaviours. Life’s repressions can emerge very strongly here and sometimes it’s as if permission to act out some of these is given by presumably being out of control. There is a deep level of fear within this client group, coupled with the level of fragmentation of personality creating an atmosphere of chaos. Within this chaos is mistrust and therefore it is very difficult for the clients to feel a sense of freedom within an environment that is supposedly safe. Clients often try and leave raising the anxiety levels of the staff team. Usually there are between 8 – 15 clients at a day centre. Given the levels of distress of these individuals, grouping them together in this way can often cause greater distress. The reflection or projection of degeneration is very evident. Are we therefore trying to build an environment of stability out of the duplication of instability? This is very important as we are often thrown into chaos by this environment. So our structures have to be solid.
So if we take one care worker and one client and we stand them together we are looking at a worker that is probably demoralised in some form or other and a client that is fragmenting and is in an unknown quantity, due to being unable to verbalise thoughts and feelings in a coherent way.
The amount of commitment and effort that the worker requires to help the client to understand what is happening is continual. The client can be extremely demanding which in turn creates greater anxiety for him or her because he/she often cannot get what they want as it has become too abstract a concept. For example the client may begin to ask questions about a simple matter. I.e. the whereabouts of the keys to their house. By the end of the conversation, which started out as simple, the client may well have incorporated several different conversations all mixed up together. These conversations are difficult to follow and if there are six or seven clients challenging workers with these types of conversations, concentration becomes a strain. Anxiety increases and the workers become distressed.
One of the day services that I worked in, the borough was resecterising (this means that the borough gets split into bits). I was not told of the splitting in two of the Day Centre provision. Meaning that, during my group at least half of my group who lived in the South of the borough would be moving to a new Day Centre. I was not informed of this change until halfway through the process.
For the clients this was catastrophic as this effectively meant that they would probably never see each other again. Therefore in my thinking the clients were becoming destabilized even further. Little compromise was made for the client in terms of the Centre being moved and the group being split; establishing a need to become aware of what was going to happen during the life span of a group.
The structural changes of a building can also cause major problems for groups. Where a door used to be? Now there’s a wall, for example. Staff change can really affect the dynamics of atmosphere within a space. Room changes can seriously interfere with group safety.
I was arriving 1hr early to nearly every session, to establish a connection with the clients and the staff. The chaotic nature of this environment seemed to change regularly. I became to understand that the client group fluctuated in attendance and the dynamic of the group changed dramatically. This was also the case if the staff team did not gel together and there were absences.
Having to accept the reality of the situation is never an ideal and although I battled with my internal chaos there was nothing that I could do but work within the confines of the presented work. For example when we had to work in a cold room we would incorporate this into our drama that day and create a cold story or what is it like when it is very cold. This reminded the clients about the war. There are a huge amount of other distractions going on whilst trying to contain a very difficult client group.
Having to negotiate with: -
Day centre managers about who would be the helpers in the group.
Respite managers for use of room (two settings contained in one unit. Day centre and a respite unit using the same building).
Caretaker, about heating? Does the Caretaker belong to the respite unit or the Day Service?
Cook about load music coming from the kitchen.
Other staff members who wanted to take part in sessions.
We are primarily dealing with clients that are being systematically de-skilled a) by the effects of the disease and b) by the circumstances that progress despite these affects. We have by our structuring of society devised certain schemes of support for various client groups. These by the nature of there design can be de-constructive.
Dynamics of atmosphere
When we talk about the dynamics of atmosphere, we are moving into the realms of physics. We are talking about energy and matter and the effects they have, one on the other. When we walk into an establishment there is an atmosphere that needs attention. How we respond to this will depend on how in touch we are with our senses. Initially the response should be one of openness to suggestion. It is all too easy to feel or think that you/I as a Dramatherapist can “fix it”; the truth is we can’t fix anything we can only draw attention to. So we feel initially helpless and out of control. The atmosphere will be different each time we go there. Depending on a huge variety of varying factors. All we can hope to do is to find a balance for ourselves within the perceived chaos of the environment.
My own way of doing this is to set up my ‘area of play’ wherever I am to work (this environment often requires one to work in the whole space as people wander about, this means the corridor outside the room and maybe the toilets, people in this environment experience a lot of anxiety and this often makes them go to the toilet more often than normal). Then I put some music on. I introduce myself and then I sit very still in a strategic position in the space where I am to work. I wait for the clients to come. Stillness is a very powerful tool in Dramatherapy and helps to settle fluctuating energy. It’s what I might call ‘holding time’.
Energy and matter exist together in a time continuum and if the matter of the human body is held still in time then it appears psychically to prevent the movement of energy. This enables the chaotic energy of the clients and atmosphere to settle briefly and aids stability in time and space.
The words "Drama" and "therapy" were first put together and used by Peter Slade (a practitioner of child drama), in 1954, in a paper called "Dramatherapy as an Aid to Becoming a Person", which was published after Slade gave a lecture on this in 1958 at the Guild of Pastoral Psychology.
He indicates in the paper, a process of productive discipline which incorporates the use of drama, to equip a person with the skills necessary to evoke; "confidence, hope, feeling of security, discovery of sympathy, and to concentration"(5)
He goes on to make valid observations about symbols, related to the dreamlike interpretations of imaginative fantasy, which are apparent within "projected play" as in objects external to the person, and "personal play" as in roles within a person:
"Symbols are thrown up, but there are many parallels which may be, as it were, symbols of these symbols, and through which the truth behind the original symbols is equally stumbled upon. The apparently haphazard or casually related train of events may represent a stark reality, so it is not generally necessary to be over careful to include symbols in suggested scenes. (8)
He goes on to say that:
There are two main qualities in the drama that I am trying to describe, and these are Absorption and Sincerity. There can be tremendous absorption in the task done and a tremendous sincerity about the way of doing it. Both these, in time, can become habits of the personality, affecting such things as ability to concentrate, remember and learn, and the sincerity brings out the fundamental things like truthfulness and honest behaviour. (10)
With the understanding of drama as therapy "Dramatherapy", we can indulge our very being within a form that is infinite in vision. In Peter Slades own words:
"In general realms, one might say that drama offers imaginary opportunity, as life does not always provide it. (20)
Since 1958, specialists of Drama, Psychology, Anthropology, and Psychiatry have formulated different systems that have become specifically equated to drama therapeutic work. Within the work extended by these practitioners, we can begin to define our “selves” using the unconscious imaginative processes. We can create places that allow us the freedom of expression so valuable to us. We can watch others exploring their freedom, which is so often a reflection of our own.
Its usage varies to a very great degree depending on the background of the specialist. Some Dramatherapists use interpretative methods some are approaching Dramatherapy from a Jungian symbolic perspective, whilst others are using a more non-interpretational form.
It is essential for a Dramatherapist to have some basic understanding of dramatic techniques these may include: Games - Role play - Character work - Play reading and/or writing - Movement Improvisation and Mask work. Not all Dramatherapists use solely drama techniques.
The appearance and close examination of the Conscious/ego State maintained by an Alzheimer’s sufferer reveals certain universal characteristic qualities. The mind goes through a slow transformation becoming increasingly fragmented leaving the recipient increasingly more confused.
In thought process, the mind will always seek to establish meaning. Initial meaning must be found within memory function, since this allows us to bring thought into consciousness. When the mind can find no meaning within the short-term memory function, which is severely impaired in this disease; it begins to fragment or branch, trying to find other channels of meaning.
Because brain tissue is decaying, lexical access becomes damaged. (Lexicons are basically internal dictionaries of our life experience). Our general understanding of logical meaning becomes irreversible and chaotic. The short-term memory begins to breakdown, becoming seemingly detached from consciousness.
The division or fragmentation transcends normal functioning to such an extent that the physical and emotional capacities connected to the cognitive functioning become detached.
This might effect: spatial awareness, recognition of environment, recognition of objects and people within that environment, language retrieval and most of all self and body-awareness, leaving the person with symptoms such as anxiety, depression, frustration, anger. In some cases the fragmentation is so extreme that the person appears to be detached from reality altogether.
Because Alzheimer’s is one of the forms of dementia, there are related symptoms such as increasing apathy and inactiveness and eventual cessation of movement altogether, sometimes over a very short period of time.
People with Alzheimer’s find communication very difficult and frustrating because of certain fundamental problems associated with the disease.
Disintegration of speech, the collapse of concentration and Confusion related to the breakdown of inner functions, which are associated with space and time, as well as many other factors.
If we imagine for a moment a group of people that have been grouped together in a strange place all with the symptoms associated with this disease, we are looking at quite a profound level of
De- construction and therefore apparent confusion.
Because of the affects of this condition, we can be looking at strange behaviour patterns. These may cause added anxieties and fears for clients that are already suffering from acute symptoms. There maybe outbursts of extreme vocalisations, physical gesture, and abusive behaviour that is unfamiliar to other clients. All of these symptoms can be evident in the syndrome that we call "Alzheimer’s Disease”. Can we sincerely predict a successful community, without some form of therapeutic intervention?
The use of Devised Stories
The reason that this type of story is so effective is that the structure of the story starts off in a very fragmented way, which works as a parallel, alongside the diagnostic implications of Alzheimer’s disease. The elements of the story slowly emerge as a foundation for the re-membering/connection of the functions of the short-term memory in particular.
The contents of the stories that emerge often include details of past experiences that help the client stabilise themselves through recognition of their own existence in the world. So the structure develops and a story begins to appear, this is constantly repeated and re-affirmed and this is accepted because of the nature of the story building technique. What appears understandably, to be constant repetition? What this achieves is a re-membering of the components of the story as we are re-membering the cognitive functioning of the clients, paying particular attention to memory.
After some time the clients start to remember parts of the story, this helps them to find a connection in space and time, in relation to the set time, content, day, and surroundings at the sessions.
Once they start to remember they automatically start to become conscious and present within the space to different degrees. This together with regular input begins to alleviate the symptoms of this debilitating disease.
However, we are dealing with a de-generative condition, so realistically we are not aiming for cure or prevention, but relief. This then requires a particular type of input.
Within this work we begin also to acknowledge past experience and to look at issues that arise from those past experiences; which have a distinct relation to the present; this sometimes has an astute clarity, which is sometimes extremely surprising given the severity of this condition.
We also observe that the re-membering triggers some other mechanisms that seem to be connected to the motor skills. The clients start to be able to recognise otherwise forgotten movement and regain the ability to manipulate limbs consciously, enabling better circulation, which in turn, helps to oxygenate the blood and brain tissue. The client in effect is becoming more conscious of him/herself, helping to improve confidence and evidently, group awareness.
In order for this method to be effective, we have to pay close attention to the juxtaposition of client, method and therapist. These have to be balanced very carefully so as not to distress the clients into thinking that they are unable to do the task. It can be a slow process and if the pacing is not accurate the group can be lost to frustration and anxiety. These clients are extremely vulnerable. Once the balance has been stabilized the process develops with ease. Client and therapist feel secure. Within this condition the clients seem to have extremely high energy levels juxtaposed with very inhibited movement and impaired co-ordination.
This then has to be contained. The way this might be achieved is to invent a structure that is split into many fragments or units. These units are structured individually and represent part of a whole. The units in general have to be completed individually, before they are brought together. We could say that we are actualising a living, external representation of the internal thought process of our client, as the realities of the internal workings are limited. By externalising it we are implementing a method of control.
A Story created by six clients with severe impairment due to Alzheimer’s disease----------------------------
The Story of Charlie
Charlie lives in a tent in the forest. He grows his own vegetables and is quite self-sufficient. He likes to hunt rabbits in the forest. One day when he was out walking, he spotted something in the distance. He looked closer, and he saw that it was a dragon. He was frightened because he knew that dragons breathe fire.
He first wondered how he could kill the dragon and couldn’t find the answer. The next day when he was walking in the forest he stumbled across a long fingernail, he wondered why it was there as he looked closer at it, his hand started to tingle and become warm, he thought of the dragon and looked up; and there the dragon was looking at him.
At that very moment his hand, with the fingernail in it, started to dance very rhythmically, and the dragon looked quite sleepy. Charlie moved closer and was less afraid of the dragon than before, he decided that he would rather be a friend, than kill him.
The dragon lives on a leaf in the forest but keeps being interrupted from what he is doing. Charlie asked the dragon what he was doing and the dragon replied making cigars.
Charlie and the dragon very soon after that meeting decided that they would remain friends together in the forest.
The whole story was constructed over a 10-week period. The sessions were constructed using strong groundwork. This consisted of stabilizing a set routine. A set warm-up was used each week, with the same movements in the same order, followed by more focused work using objects of different sizes, textures, colours, and shape. These were used primarily to focus motor skills. It became evident that interest in the process deepened during this process. Psychologically and cognitively, the use of different shapes, textures and colours encourages slightly different motor skills and neurological progression. The way in which we hold a ball for an example.
We examined these objects and during the course of the development the clients equated them to past, present or imaginary events although not particularly coherently. This encouraged and enabled the clients to become more aware of themselves and each other. This would be defined as the embodiment process.
Once the clients started to identify and become conscious within the space, the story making began, this usually started as a consequence of the completion of the initial process. The story included objects that were used at the different stages.
I deliberately chose objects that may have held some significance within the story and in actuality at the same time juxtaposing fantasy and reality at the same time. The group ran in the autumn so I used objects that were relevant to autumn. This had a significant impact and we were able to realise more truthfully.
Once a suitable set of actions and objects had been established, these were kept in place to maintain a balance within the process. This enabled the re-membering processes. Each consecutive week the symbols were repeated and the story emerged concluding in a narrative both of fantasy and a story within the reality of the group and the reality of the autumn.
A cloth or platform is laid in the centre of the group on the floor. Attention is drawn to the evolving story, which is created by laying objects onto the cloth. This enables the group to have a focal point. Because the story is an evolving idea, the repetition is normalised and accepted. We cannot afford to cheat our clients or infantilise them, as they are adults and need respect at all times.So we draw attention to a focal point, which is represented by the evolving story. By repeatedly drawing our attention back to the focal point we are internalising focus. We are internalising group stability as the group becomes balanced. Our anxiety lessens because the focus is removed from internal processes and projected onto an external fixed point.
Through this process the clients were more able to be together in a relaxed and efficacious way. A very large man who caused alot of distress at the day centre through being very tactile with everybody touched people less. During the process and by speaking with staff we decided to give him his briefcase from work. Charlie the main figure in the story turned out to be his wife’s name. As he remembered her he became less agitated. He started to bring his briefcase to the centre and stopped touching people. A lady who hadn’t spoken for two years began to speak again and began to be accepted in the group in a healthier way. During one of the group sessions she got up to put a leaf into the story, it took her about three minutes to do this and I encouraged her. She bent down and put the leaf in the story and lost her balance and rolled on the floor. She was full of delight that she managed to do this task and it enabled her to have the confidence to speak. Because she spoke people weren’t so afraid of her. Other members of the group were more confident and relaxed. The efficacy of this process proves that far from dismissing people as too ill, too mad or old we can improve the quality of life for people who are otherwise left in an extreme state of distress. This process also helped the carers as the clients became easier to manage because their distress had decreased.
Cc Alix Harrow 2001
Gross, R. 3rd Ed. (1996) Psychology: The Science of Mind and Behaviour Hodder and Stoughton: London
Slade, P (1959) Dramatherapy as an Aid to Becoming a Person The guild of Pastoral Psychology; Guild Lecture 103.