In Touch -reflecting on fifteen years of dance movement work in a residential home for older people

In this paper Jasmine describes the difficulties and joys of working in this context, and the remarkable changes that have occurred over a fifteen year period, from 1981 - 1996. The paper contains diary extracts, theories of adult learning, and the psychological thinking that informs her work to the present day. A version of this paper was first presented at The Foundation for Community Dance Conference, Beyond The Tea Dance in 1996. Additions were made, and a revised version presented at the University of Surrey Concepts and Issues Seminar in 1999.

For successful development, the human being needs to be :

• thought about
• felt for
• felt, held or physically touched

( Valerie Sinason, Tavistock Lecture, October 1996 )

Thus we need to be in touch, intellectually, emotionally, physically, and I would add socially.

In our culture we find it difficult to think about, feel for and physically relate to older people, the more so if they are disabled, have intellectual disabilities, are mentally ill or become confused.

However, we are all getting older.!!!

Background and context

In 1981 I received a telephone call from an organisation called SHAPE asking me to visit a residential home called Ilchester in Kensington with a view to setting up a movement group. They offered the home a 12 week trial period, after which if the pilot was successful, the home would look for sources of funding for the work to continue. Fifteen years later the work is still continuing..........

Over that period of time the work has been funded by:

• Local Adult Education
• Campden Charities
• Residents Amenities Fund and Kensington District Nursing Trust

There was a change in management in the mid eighties. In 1992 the residents and staff moved to Alan Morkill House, near Ladbroke Grove to accommodation where each person has their own small kitchen, bathroom and bed-sitting room, and where they live in small units.

Getting started.....The Melamine Years....

I saw with my own eyes in 1981 a large pot of tea with the milk and sugar already in it being poured into melamine cups, served by staff in nylon overalls.
Things are very different now, I am pleased to say.

I am going to read an extract from an article I wrote in 1982 about getting started and the difficulties I faced.

MARCH 1982 Diary Extract

The residents live mostly in single rooms, or sit in "their"armchairs around the perimeter of the lounge, or along the corridor, sleeping, reading, knitting or just looking blank, rarely chatting or communicating freely with one another. Before even thinking of getting a group started I had to get to know each person, visiting them in their rooms and building relationships. I enjoyed meeting and chatting to each person, and they loved having a new face around, someone from the outside world, but it was an almost impossible task getting them to come together as a group. This, I discovered, was to do with how they felt about themselves, and one another, and about their situation. These feelings effectively stopped them communicating with one another.

There are feelings of resentment about being in a home. Some feel as if they have been thrown on the scrap heap. They are people who have not chosen to live together, and many dislike the people they live with. Communal living, but not living as a community has its drawbacks, for example loss of independence, lack of choice, and erosion of personal dignity. Some feel betrayed. Decisions taken over their heads " for their own good" landed them in a home where they would rather not be. Matron warned me that they despise group activity of any sort. Many times I heard "I'm not coming then if she is."

Some feel as if they are waiting to die, and don't want to do anything. They have just given up. They are lonely, and isolated. Some regress into shameless " Who cares " behaviour because they feel that nobody cares about them. They feel ugly and redundant, believing all the harmful , inaccurate stereotypes associated with age, and this lack of self-worth stops them reaching out to make friends, or communicate with one another. They feel they have little to say, and that nobody believes them anyway.

Care staff at the home are busy with the day to day activities of bathing, feeding, and dispensing drugs, and find they have little time to sit and talk to the residents. The residents feel they have things "done to" them, and do not get the close contact they need. I feel that whatever the staff did, they could never fulfil everyone's needs, and receive an unfair share of the blame when the real problem lies in the artificial environment of the residential home.

I don't think old peoples' homes are very good for older people, and nor do the residents.

Some of my own feelings, which I hoped would not be communicated to the residents, were of frustration and despair at times. I was very much left to get on with it, with little staff support. I felt overwhelmed, but determined not to give up.

MISSION IMPOSSIBLE ?

One resident, Margo do Glossop (pictured with me on the right) was keen on the idea of a group right from the start, and she took me round and introduced me to some of the other residents, helping me to break the ice. Her support was invaluable. It would have been impossible to go in cold.

Margo died in November 1995, and was with the group she helped form for 14 years.

I stressed right from the start that the group would not happen if they did not want it. It was their choice, and I would never, ever allow anyone to be "wheeled in."

It might be helpful at this point to share some thoughts on adult learning which informed my thinking and approach.
- That it is important to draw upon and use students' own experiences.

Malcolm Knowles says "As an individual matures, he/she accumulates an expanding reservoir of experience that causes him/her to become an increasingly rich resource for learning, and at the same time provides him/her with a broadening base to which to relate new learnings"
- Adults have a deep-seated need to be what Knowles calls self-directing.

They need to make their own decisions, to be treated with respect, and to be seen as unique human beings. Adults frequently underestimate their own ability, and devalue their experience, and so the balance has to be sensitively handled. A learning climate has to be established where adults are accepted, respected, supported, and the teacher really LISTENS TO WHAT THEY HAVE TO SAY. I would add that the room should be comfortable, private, and free from interruptions.
- Sensitivity to timing is crucial to catch what Knowles calls the teachable moments.

These are the moments when people are ready to learn something that they need to because of their developmental phase, or social role, for example moving into a residential home. It is not appropriate to try to teach everyone everything, but allow for maximum flexibility. Each person will take away something different from the same session. Afterwards, something may become clear on further reflection. The penny may drop. Further questions may arise.
- Adults have a problem-centred approach to learning.
They want to be able to apply what they have learned immediately to their situation, and deal with problems they are facing now. What they learn has to be relevant, and meaningful.

These four assumptions indicate a PERSON CENTRED rather than a subject centred approach, engaging the whole person intellectually, psychologically and physically. They indicate a relaxed, yet attentive and perceptive approach.
In adult learning, there is a mutual relationship between teacher and learner.

BE YOURSELF.....AND LET THEM BE THEMSELVES !!!

Another adult learning theorist, Paula Allman tells us that cognitive decline is not a natural consequence of ageing, challenging the existing evidence and persisting stereotype of inevitable and irreversible decline.

It is now recognised that development, or lack of it, during adulthood is inextricably linked to the degree and quality of individuals' interactions with their social and historical contexts, and environment. Since such interactions could fluctuate the pattern of development could as well. This model of development has been called the plasticity model.

This is a much more hopeful picture. There is potential for development across the entire lifespan. Physiological decline need not mean intellectual decline, and any decline is reversible, meaning that change is always possible.

Our attitudes towards older people can positively contribute towards the development of a more positive self-image (as well as the opposite)

How we see people affects how they see themselves.

With some of these theories in mind, helping me to think about the work I do at Alan Morkill House, I shall turn to some of the developments and changes that have taken place, and give a glimpse of what we have been up to for fifteen years, bearing in mind that is now WHAT you do, but HOW you do it that matters.

1996 Diary Extract

I arrive at about 10.30am. I go and ask each member individually if they would like to come to the group that morning, and have a brief chat. They know that they can take weeks off if they like, and I can usually tell whether or not to gently persuade people to come if they say no at first. Some people need help physically to get along to the group, and this affords further opportunities to talk, and find out how people are feeling, catch up on their news, and give the all important 1:1 personal attention. I leave them in the room as I go off to greet another member, and they talk among themselves. This never used to happen, and they all used to sit in silence waiting for me to come. Now they do talk to one another much more. Following the recent death of one of the group, we spent quite a while remembering all the things we liked about her, and how sudden and unexpected her death was and how everyone really missed her. It was very unusual for the group to talk so openly about death at all, and to express such strong and good feelings about one of the members. ( Think back to the first extract I read. )

Membership of the group is open to anyone who wishes to come, and I encourage group members and staff to let newcomers know about it.
We gently exercise for about an hour together, to music.

Movement aims:

• To break into the destructive cycle of inactivity, where the less you do the less you are able to do.
• In order to motivate them, movement must bring pleasure rather than discomfort.
• The work must be geared to individual needs, so get to know them well, and listen.
• It must be relevant, and useful in everyday life.
• It must be enjoyable, flexible, creative, spontaneous, fun !!

I combine exercise with conversation, gentle massage, partner work, individual attention, the occasional burst of song, tears and laughter........ We conclude the morning with a choice of tea or coffee ( in china cups ) more conversation, and this week with a discussion on what they enjoyed about coming to the group in preparation for this presentation.

What the group said:

• They LIKE IT. They like the atmosphere, describing it as friendly and warm.
• They like coming together to DO something.
• They like having somewhere to go.
• They like the small size of the group ( between 4 - 8 )
• They feel better afterwards, and enjoy the exercise. It relieves aches and pains.

They like the music, the dancing, the PEOPLE, they enjoy themselves. Staff report that the social aspect is of great value, and that residents love to have an outsider coming in especially for them, and not connected with the daily routine of the residential home.

Further developments.....

Many of the residents love music, and comment on the selection that I bring in on tape. This inspired the idea for a series of concerts at Alan Morkill House, since residents were unable or unwilling to venture out, due to poor mobility, lack of confidence, incontinence, or the time of day ( evenings usually ).
To date we have had:

• Spanish and classical guitar ( Hugh Burns )
• Flute and piano duo ( Francesca Hanley and Ian Stewart )
• An entertainer, specialising in popular songs ( Norman Hoskins)
• Datchet Children's Choir ( Jenny Haylett )
• Guitar and piano duo ( Hugh Burns and Ian Stewart )

All are professional musicians, and funding for the concerts was generously provided by North Kensington Arts, and the Orpheus Trust.

As you can see, things have changed considerably over the years due to a combination of factors. The result is that people are more IN TOUCH with themselves, with others, and to a growing extent with the outside world.

I first presented the material in that paper in 1996, and I'll turn now to some of the changes that have occurred in my thinking about my work with older people, in particular with older adults with dementia.

There has been a change in my own awareness and understanding of dementia, resulting from my visit to Heather Hill in Australia in 1995, when I was awarded a Lisa Ullman Travelling Scholarship. I regularly attend a Dementia Forum in London to keep up to date with developments in the field.

Also, I am getting older myself. Ageing is not one of those things that can never happen to you, and so I have been thinking much more about WELLBEING in terms of :

Physical health and fitness
Psychological wellbeing

• What factors contribute to human happiness, and wellbeing ?
• What factors contribute to illbeing, and make matters worse ?
• How do we overcome adversity, and develop our resilience ?
• How does the CONTEXT in which we work, and others live, for example a residential home, contribute to our wellbeing, and to its opposite, illbeing.

First of all, our physical health, remembering that we are all getting older !!!

DEATH BY INACTIVITY....
PHYSICAL CHANGES

• muscles atrophy and joints develop contractures
• bone loses calcium leading to osteoporosis and fracture
• heart atrophies and blood pressure increases
• risk of thrombosis and embolism increases
• appetite diminishes
• gastro-intestinal movement decreases and constipation increases
• potential for urinary infection increases
• potential for respiratory infection increases
• potential for decubitus ulceration increases
• sleep pattern is disrupted

DEATH BY INACTIVITY......
PSYCHOLOGICAL CHANGES

• decreased alertness
• diminished concentration
• increased irritability, impatience and hostility
• increased tension and anxiety
• listlessness and restlessness
• depression and lethargy
• feelings of oppression
• problem-solving difficulties
• confusion and disorientation

Changes take place within a very short time of inactivity
BUT LOOK WHAT HAPPENS WHEN WE ENGAGE IN ACTIVITIES?

PHYSICAL CHANGES

• Muscle strength and joint mobility increases
• bone loss diminishes and healing time of fractures reduces
• blood pressure and potential for thrombosis and embolism diminish
• appetite increases
• gastro-intestinal movement increases and defecation normalises
• continence improves
• potential for respiratory disorders decreases
• potential for skin disorders decreases
• sleep pattern normalises

PSYCHOLOGICAL CHANGES

• smiling, laughing and talking increases
• initiation of and engagement in social interaction increases
• alertness to environmental stimuli increases
• concentration and memory improve
• emotions are more readily expressed
• agitation diminishes and relaxation increases
• humour is manifest
• self-assertion increases
• self-expression is enriched
• ability to give and receive affection increases
• daily living function is improved

Tessa Perrin. 1998 NAPA Newsletter

Next we turn to psychological wellbeing....enjoyment, and the work of Mr C. with the unpronounceable name. from flow, the psychology of happiness. Mihaly Csikszentmihalyi

The phenomenology of enjoyment has eight major components:

• The experience usually occurs when we confront tasks we have a chance of completing.
• We must be able to concentrate on what we are doing.
• The concentration is usually possible because the task undertaken has clear goals.
• The task must provide immediate feedback.
• One acts with a deep but effortless involvement that removes from awareness the worries and frustrations of everyday life.
• Enjoyable experiences allow people to exercise a sense of control over their actions.
• Concern for the self disappears, yet paradoxically the sense of self emerges stronger after the flow experience is over.
• The sense of the duration of time is altered; hours pass by in minutes, and minutes can stretch out to seem like hours.
• The combination of all these elements causes a sense of deep enjoyment that is so rewarding people feel that expending a great deal of energy is worthwhile simply to be able to feel it.

• We must not underestimate the effect of enjoyment.
• Having fun is a serious business, with dramatic effects on human wellbeing.
• Life in a residential home, however, may not be much fun. Think back to the diary extract I wrote.

The psychologist Tom Kitwood of the Bradford Dementia Group has placed a lot of emphasis on the impact of the way in which others interact with older adults with dementia, and how this affects their wellbeing, regardless of the organic brain damage that may have occurred.

It is a depressing, but familiar list.

How we can make matters worse, from the work of Tom Kitwood 1990, 1997.

• TREACHERY
• DISEMPOWERMENT
• INFANTILISATION
• INTIMIDATION
• LABELLING
• STIGMATISATION
• OUTPACING
• BANISHMENT
• INVALIDATION
• OBJECTIFICATION
• IGNORING
• IMPOSITION
• WITHOLDING
• ACCUSATION
• DISRUPTION
• MOCKERY
• DISPARAGEMENT

In staff training workshops I often use Problem Pages to help us to see things from another's point of view, as it is so easy to contribute unwittingly to the illbeing of another person, and just as easy to make positive change with greater awareness.

Lastly, the CONTEXT in which we work as community dancers, dance artists, workshop leaders or whatever title we give ourselves, and in which others live demand that we all develop resilience, and I turn now to the work of Edith Grotberg, whose research was based on children all over the world, but is still relevant to adults.

THREE SOURCES OF RESILIENCE
taken from the work of Edith Grotberg.

• I HAVE
• I AM
• I CAN

How people respond to situations and how they help others to respond, separates those who promote resilience from those who destroy resilience or send confusing messages. To overcome adversities people draw from three sources of resilience......

I HAVE

• People around me I trust and who love me no matter what
• People who help me when I am sick, in danger or need to learn
• People who show me how to do things right by the way they do things

I AM

• A person people can like and love
• Willing to be responsible for what I do
• Glad to show my concern for others
• Respectful of myself and others
• Sure things will be all right

I CAN

• Talk to others about things that bother me
• Find ways to solve problems that I face
• Find someone to help me when I need it
• Control myself when I feel like doing something that is not right

• I HAVE = people who help us, role models
• I AM = self-esteem, inner strength
• I CAN = social and interpersonal skills

Resilience results from a combination of these features

Similar themes emerge in the work of Aaron Antonovsky in Unraveling the Mystery of Health. He concerns himself with coping skills, and talks about what he calls the

THE SENSE OF COHERENCE

The sense of coherence is a global orientation that expresses the extent to which one has a pervasive, enduring though dynamic feeling of confidence that the stimuli deriving from one's internal and external environments in the course of living are structured, predictable, and explicable. the resources are available to one to meet the demands posed by these stimuli.
These demands are challenges, worthy of investment and engagement.

the three components of the SOC are:

• COMPREHENSIBILITY
• MANAGEABILITY
• MEANINGFULNESS

REFERENCES:

• ANTONOVSKY, A (1987) Unraveling the Mystery of Health. Jossey-Bass
• CSIKSZENTMIHALYI,M (1990) Flow, the psychology of Happiness
• GROTBERG, E (1995) A guide to promoting resilience in children.
  Bernard van Leer Foundation.
• HILL, Heather An attempt to describe and understand moments of experiential meaning within the dance therapy process for a patient with dementia.
  Unpublished thesis.Melbourne. Australia.
• KITWOOD, T (1997) Dementia Reconsidered. Open University Press
• NIND,M and HEWETT,D (1994) Access to Communication. David Fulton.
• PERRIN, T Play, a Neglected Concept in Dementia Care.
  Unpublished manuscript. Bradford Dementia Group
• Non-verbal Communication. The Currency of Wellbeing
  NAPA Newsletter December 1998. Vol2. Issue2
• What do you say when people tell you that activities are not important?
  SINASON, Valerie (1992) Mental Handicap and the Human Condition.
• Free Association The man who was losing his brain
  Lecture. The Tavistock Clinic. London, 1996
• TIGHT, M ed (1983) Adult Learning and Education. Croom Helm