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Moira Gillespie Professor Susan Ronaldson Kim Devery Stephen Oldham This paper was presented by Moira Gillespie at the American Association of Nursing in AIDS Care held in Miami, USA, in November, 1997. |
AIDS Dementia Complex is a major problem for individuals, their carers and healthcare professionals. However, there are few educational programs to assist carers and there are few articles or research projects which have been concerned with the most fundamental aspects of caring for people living with AIDS Dementia Complex - enhancing communication. This paper will report on a project based at Sacred Heart Hospice. The main aim of this project was to explore how can we better care and communicate with people who are living with AIDS Dementia Complex. The main themes which will be explored in the paper include:
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Communicating with someone who has lost a sense of social and personal boundaries and society's norms can be a challenge which nevertheless needs addressing. A major barrier in the provision of quality care for the confused person is the inability to define what is causing their agitation or aggressive behaviour. Nurses communicate constantly with their patients and have more day to day contact than doctors and allied health professionals. Therefore, it stands to reason that nurses are in a prime position to develop a communication tool that can best meet their patients' needs.
AIDS Dementia Complex (ADC) is characterised by progressive cognitive changes accompanied by motor and behavioural disturbances. Signs and symptoms include loss of concentration, slower information processing, word retrieval, and verbal fluency, inappropriate behaviours, short term memory loss, apathy, social withdrawal, and in some cases hypomanic episodes. The resulting behaviours lead to frustration for the carer in trying to determine the best approach in effective communication to achieve optimum care.
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The Humanistic Communication project arose from interest generated at a Sacred Heart Hospice seminar regarding various aspects of ADC, in particular a presentation by Professor Ronaldson concerning possible lessons to be learnt from nursing practice related to caring for elderly people with Alzheimer's disease. The project evolved from demand from nursing staff at the Hospice who wished to learn more about caring for, and communicating with, people who are living with ADC.
There is a wealth of literature on the biomedical aspects of ADC, specifically epidemiology, pathophysiology and therapeutics. However, there are few published articles or research projects which have been concerned with the most fundamental aspects of caring for people with ADC i.e. enhancing communication. There is a need to develop models of care which address the specific needs of these patients being cared for in the health care setting.
Some of the articles reviewed spoke of identifying problematic behaviours, such as anger and agitation, and giving 'hints' about appropriate reactions from caregivers. Apart from urging caregivers to give importance to honest and open communication, little was suggested in the way of how to deliver this communication.
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Validation Therapy, a communication technique used with confused elderly people, was developed in the 1960's by Naomi Feil who believed that elderly confused people retreat into their past in order to restimulate memories, relive past events and resolve losses and conflicts experienced throughout life (Feil, 1992; Ronaldson & McLaren, 1991).
Feil worked on the assumption that all behaviour has meaning, that early learned emotional memories replace intellectual thinking, and that the elderly person returns to the past for the purpose of trying to resolve unfinished conflicts, to relive past pleasures, to restimulate sensory memories, and to relieve boredom and stress by retreating from painful feelings of uselessness and loneliness.
Jones (1985) stated that Validation Therapy is the process of communication with disorientated elderly people by acknowledging and supporting their feelings in whatever time or location is real to them, even though this may not correspond to our 'here and now' reality.
Validation therapy involves firstly identifying the type of confusion and associated behaviours. The communication between nurse and patient is then tailored to that particular individual, and importantly centres around acknowledging the patient's sense of reality. However, Feil stressed that it is not suitable for people with psychosis, hypomania, drug-related confusion, or confusion related to infection (Feil, 1992; Ronaldson & McLaren, 1991).
Although originally intended for use with the older person, the technique of Validation therapy may be adapted for younger people, namely those with ADC, by adopting the philosophy behind Validation Therapy. Sacred Heart Hospice is undertaking a series of workshops on training nursing staff in an alternative form of communication which would draw on the individual patient's life experiences, and validating these experiences while gently maintaining the 'here and now' reality.
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At the first session that Professor Ronaldson held she asked nurses to describe what Humanism meant to them individually. Answers ranged from respect for humans and understanding the nature of sameness, values of peace, love and happiness, equality, individuality, spirituality, and humans as growing beings.
Some of the difficulties nurses experienced and those they had observed with their colleagues were:
Relating to the patient as a child i.e. parent/child roles, that short term memory loss could be inconsistent from minute to minute, and from day to day; the patient's reactions to a situation could differ depending on the approach and communication style of the nurse; giving too much information or speaking too fast can increase agitation and confusion.
Nurses felt that the skills required included patience, understanding, trust, and a 'connection' established between the nurse and patient. It was felt that nurses should develop a nonreactive approach to specific behaviours that may be confronting while at the same time defusing any stress that the behaviour may be causing to others. Honesty, acceptance and a nonjudgemental attitude were also felt to be important.
Using Erik Erikson's Developmental Stages (Erickson, 1977), from which Validation Therapy in part has evolved, participants in a series of three workshops were asked to place the person with ADC in the appropriate stages(s). Although Erikson's Integrity vs Despair is historically seen as an older person's developmental task, this could equally be applied to the younger person with ADC facing grief and loss at a shortened active life span due to ADC, a life that may no longer extend into old age. Additionally, the tasks of Intimacy vs Isolation and Generativity vs Stagnation could be seen to apply to the person with ADC. Working on this premise, the group participants began exploring Validation Therapy and how this could be adapted and applied to fit a younger age group.
Using exploratory words for communication such as how, when, where and who, rather than the commonly adopted use of why, which can be perceived to be a judgemental confronting word, the group used role play to examine some of the behaviours associated with ADC and whether Humanistic Communication would work in these instances.
Although the age group of people living with ADC, i.e. predominantly men with an age range of 30-45 years, do not have the experiences of the much older adult, it was felt that they nevertheless had feelings of grief in a life in which they could no longer fully participate i.e. employment, social activities, and loss of intimacy which lead to feelings of isolation. As one nurse pointed out the older person retreats to the past to relive memories, whereas the person with ADC is desperate to envisage a future where they can return to a sense of normalcy and retrieve their shattered life.
Each week the group would meet and discuss the experiences they had with patients with ADC in the Hospice and whether changing their approach had helped to reduce patient's agitation and distress.
Nurses related episodes of a patient who was wanting to leave the Hospice and had made his way down into the lobby intent on departing. Using Humanistic Communication, the nurse rather than trying to convince the patient not to leave, encouraged him to talk about where he was going, who he would see when he got there, and how would he get there. By using this method, the patient became so engrossed in telling the nurse all these things, that he became distracted from his initial attempt to leave, and was able to be gently persuaded to return to the ward with a promise of a cappuccino, which was his original motivation for leaving.
It became apparent, after eliciting some information from his friends, that he used to visit a cafe daily to have coffee and this had become part of his normal routine. It can be seen that trying to reality orientate the patient, such as 'you don't live near that cafe anymore', or 'it is too far away', may have increased his frustration and agitation. Attempts to return him to the ward against his will would have been stressful for the patient. The outcome would have no doubt been frustrating for the patient and the nurse.
The nurse had focused her approach to the patient's present needs, and the thoughts and feelings which were driving his present behaviour. The nurse had 'engaged' the patient in his reality, acknowledging his feelings and his need to leave. While distraction was not the original intent of communication, it was a positive outcome in this instance.
There are, however, instances where reality orientation can be used in conjunction with Humanistic Communication. For example, if the person's safety, or those of others was at stake, it may be necessary to intervene to ensure that no-one was placed at risk of harm. However, after the event, Humanistic Communication could be used to elicit the motive behind the person's actions and to acknowledge the feelings behind the behaviour. It can be said that using this form of communication can defuse a situation as a form of distraction from the intent of the original person's action.
Humanistic Communication is not suitable for someone with paranoid delusions and a diagnosed psychiatric condition, nor in cases of hypomania.
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A focus group was conducted at the beginning of the scheduled workshops using a semistructured interview approach. Participants were asked for the reason for interest in attending the workshops and there was an exploration of the needs of both patients and nurses. Communication difficulties were highlighted and the nurses spoke of an urgent need to gain new skills in order to provide quality nursing care. A second focus group was conducted some weeks after the conclusion of the workshops at a time when the participants had some experience with Humanistic Communication.
In summary, the nurses were in agreement that the Humanistic approach to Communication had given them both new insights and new skills in providing meaningful communication which had facilitated quality nursing care.
At the time of presenting this paper, the second series of workshops have been conducted. They have gained an impetus of their own as nurses who attended the first workshop have spoken of their satisfaction and enjoyment at gaining new skills in an area which was up until then a cause of considerable stress and frustration.
Humanistic Communication is proving to be a powerful tool in enhancing communication between nurses and people living with ADC. Nurses have expressed a greater degree of satisfaction and less frustration when caring for this group of patients within a Hospice setting.
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