Practice Nursing – June 2012 “An improved experience for dementia patients”
Dementia is associated with old age, but onset has been reported from early middle age. It may be caused by a variety of diseases, such as Alzheimer’s, Lewy body, Pick’s disease, vascular disease and Korsakoff’s syndrome; but in the majority of patients, a substantial deterioration in mental functions is observed. An individual with dementia is likely to have short-term memory failure, communication problems, lack of orientation, loss of intellectual capacity, and changes in personality traits (Weatherhead and Courtney, 2012).
As the disease progresses, communication with carers and health professionals becomes more challenging, and may hamper care interventions, particularly in advanced dementia. During earlier stages of the condition, dementia may appear to be a complication difficult to identify owing to minimal symptoms, but nevertheless it can present a barrier to a health professionals’ ability to address an individual’s needs adequately.
Patients with advancing dementia have difficulty in making sense of the present in a way that is considered normal for the rest of the population. Confusion, anxiety, frustration and anger may arise as a single symptom or in combination. As the condition progresses, gaining ‘access’ to the individual who is ‘cloaked’ with the effects of dementia can generally become more difficult.
A visit to a general practice may be a disorientating, or even frightening experience for a patient with dementia who faces interactions with strangers in unfamiliar surroundings. Nurses in a busy practice will have limited time to spend with the patient. Therefore, the nurse may have difficulty in understanding what the patient wants to communicate and, importantly, how he/she is communicating making the provision of good care difficult.
Approximately 820 000 people in the UK have dementia (Alzheimer’s Research Trust, 2010). This number is forecast to rise rapidly as a result of demographic changes. Therefore, practice nurses, along with other health professionals, may be facing the challenge of caring for a greater number of patients with dementia.
The Specialized Early Care for Alzheimer’s (SPECAL) method may be a benefit when caring for dementia patients. This article will explain ways to use the SPECAL method in general practice to improve communication and consultations.
The SPECAL approach is advocated by specialist dementia care providers, such as The Good Care Group (Table 1). This approach enables health care staff to build communication bridges, optimize treatment programmes and outcomes, while saving time in a practice. An evaluation from the Royal College of Nursing Institute (Pritchard and Dewing,1999) underlined the value of the approach, showing how it enabled elderly people with dementia to be cared for at home for a longer period of time.
The SPECAL method is based on the knowledge that a person with dementia uses intact memories, often from many decades ago, to assist in making sense of his/her current situation. The SPECAL photograph album concept is used to identify and harness intact past memories so that a person with dementia can live happily in the present by drawing on memories of situations and activities that occurred in the past. The album offers a way of helping frontline staff gain an understanding of the way normal memory works, what usually happens as part of the ageing process, and a single highly significant change which occurs with the onset of dementia (Garner, 2008).
The change is that while the person with dementia continues to store the feelings of what has just occurred in his/her life, he/she randomly, intermittently and increasingly fails to store the associated facts. This may play havoc with the person’s ability to make sense of what he/she is doing, where, with whom, and why. This can impact significantly on daily life.
The SPECAL method takes this change into account, as well as the way in which a person with dementia searches for factual information from long ago, to make a reasonable match with what is happening now. It is therefore important to create a detailed study of the person’s past. A clear idea of the person’s likes and dislikes, and how he/she is motivated, can be discovered through detailed observational tracking, termed SPECAL Observational Tracking (SPOT) (SPECAL, 2012). This enables carers to have a thorough understanding of how to protect the emotional state of the person with dementia.
Listening to a person with dementia, and identifying and interpreting actions, gestures, frowns and smiles, assists in building a clear picture of the individual’s strengths, weaknesses and needs.
As the change in memory continues to have an impact on the patient, it is important for the carer to recognize that feelings are paramount. There is an important ongoing need to protect the emotional state of the person for whom care is provided.
People who do not understand the SPECAL photograph album concept may have a suspicion that the SPECAL method is ‘make believe’. A person with dementia should work with intact memories as a replacement for more recent, lost, information, so that others are able to avoid disturbing the sense that the person with dementia is making of the cur- rent situation.
Emphatically, the method does not impose ideas on an individual. Carers merely learn to avoid disturbing the sense that the person with dementia is managing to make of his/her situation. The SPECAL method adopts a disability model and is led by the needs of the person with the disability.
For each individual, a one-page SPECAL Passport is developed. This passport clearly sets out the themes which help to bridge the gap between the intact memories of the past and present activities (SPECAL, 2012). By using these intact memories to provide an acceptable context and state of emotional wellbeing, the person with dementia has a stable, contented position, free from anxious questioning and agitation. The SPECAL Passport also identifies the questions that the person is most likely to ask, and the answers which have been shown to promote the greatest sense of wellbeing in the individual.
There is a carefully tried and tested ‘altruistic trigger’—a bottom line or bargaining strategy. This is useful in certain circumstances in which the co-operation of the person with dementia is not immediately forthcoming due to his/her lack of storage of recent factual information caused by dementia.
The SPECAL method can be applied, and has positive results at any stage of dementia. It is sensible to introduce it at as early as possible after diagnosis, since unnecessary trauma can be avoided from that point onwards. The approach must always take into account the person’s own preferences. This is achieved by the use of SPOT. The individual is well-placed to state, either verbally or non- verbally, whether or not his/her daily experience is acceptable. In the case of a person with advanced dementia, where the SPECAL method has not been adopted before, the communication process may be more difficult. With patience, dialogue can flow and understanding can be established.
Any person with dementia will have an insight into his or her condition, know some- thing is wrong, and wish to communicate. Such an individual is likely to have experienced a decline in verbal skills and other people may have difficulty in offering explanations about feelings and needs. However, given time, excellent lines of communication can be established, and consent and approval can be obtained by carefully working with the individual.
SPECAL golden rules
Following the SPECAL golden rules enables health professionals to communicate effectively with the individual with dementia (SPECAL, 2012). These are aligned to recommendations produced by the Royal College of Nursing’s advanced nurse practitioner forum (Hoe and Thompson, 2010).
The SPECAL golden rules stipulate that the individual should not be contradicted, and that direct questions should be avoided. Also, the person providing care should watch for behavioural clues, should be ready to defuse difficult situations, and should regard positively the repetition of words and phrases by the patient, as these offer valuable patterns to be explored.
Contradiction must be avoided Contradicting the individual with dementia is unhelpful and should be avoided. The recommended path is to accept and contribute positively in conversation, rather than express the view to the individual that he/she has got something wrong, or can no longer do something.
The SPECAL method helps facilitate a constructive conversation flow without ever imposing different ideas on the individual.
Direct questions are unhelpful
A person with dementia who is asked a direct question may become stressed. A question represents a request for information; this is something that the person with dementia may lack. If dementia is present, by definition, new information is often not being stored and questions may cause difficulty.
A nurse may think it a good idea to offer a patient with impaired mobility a wheelchair in which to travel to a car park outside the practice. Offering the wheelchair might seem common sense and harmless, but asking the patient with dementia if he/she would like to use it could immediately induce an element of stress. The patient might begin wondering whether the wheelchair would be difficult to get into, if a charge would be made for its use, and even why he/she would require the use of a wheelchair.
Instead of directing a question at the patient, a statement would be preferable. For example, ‘I’ve found this wheelchair and thought we could see together if it would be useful for you.’ The statement implies helpful co-operation to which the patient would be far more likely to respond favourably.
The ‘expert’ will provide useful clues
The person with dementia should be regarded as an ‘expert’ who is able to provide information to bridge communication gaps. By using careful observation, behavioural clues can be picked up. This will help to identify what prompts positive and negative reactions, and which phrases are found to be motivational.
Repetition should be regarded favourably. A common symptom of dementia is the tendency of the individual to be verbally repetitive. Single words, phrases, and complete
Stories or anecdotes may often be repeated. Such repetition should not be dismissed as unhelpful or time-wasting. Instead, it should be seen as an indication of what is currently a matter of significance and importance to the person with dementia, and as such respected and given a favourable response. This additional information is invaluable in care plan development.
Do not blame the person with dementia
If the patient behaves in a way which makes delivery of treatment more difficult, protection of the patient’s self-esteem must be fore- most. The nurse should act as if he/she is the incompetent one, not the patient. This will increase the confidence of the patient and make further negotiation much easier. Perhaps the nurse could say, ‘Silly me, thank goodness you are keeping an eye on me.’ It is unproductive to say ‘silly you’ to the patient. This is counter intuitive, not common sense, but where dementia is concerned, it works.
Emotional damage is easily and unwittingly inflicted on a person with dementia. The blamed individual is likely to be hurt to the point of losing self-esteem and becoming less co-operative. By cheerfully accepting the lesser role, the nurse achieves on two fronts. First, there is avoidance of the patient experiencing negative feelings associated with blame. Second, the patient’s confidence is increased by having a sense of competence and control. With the no-blame approach, the patient’s emotional state is safeguarded and sense of wellbeing remains intact.
If there is any doubt about what the person with dementia is trying to communicate, especially if important information is sought, then a different tack, continuing to utilize the SPECAL approach, should be pursued. Increasing communication effectiveness with the individual by having him or her focus on a subject of interest and then steering the conversation back, without asking direct questions, to the area of sought information can be highly productive.
It is beneficial if nurses and other practice staff can understand the position of the patient with dementia who is faced by unfamiliar surroundings, people and activities.
A little time spent listening to, and observing the reactions of the patient, will help establish a communication bridge. This will result in the patient having a greater acceptance of treatment plans and thus he/she will offer greater co-operation over their implementation.
If a patient is experiencing advanced cognitive decline, it is essential to recognize that the feelings of the person will dictate how he/she acts in a given situation. Emotional protection needs to be consistently provided, and the SPECAL approach has merit. Substantial benefits can be derived from applying the SPECAL golden rules (SPECAL, 2012)—do not contradict the patient, avoid asking direct questions, look out for behavioural clues, regard the patient’s tendency to repeat words, phrases or complete stories or anecdotes as helpful, and do not apportion blame to the individual.
When the patient with dementia visiting the practice is ‘won over’, the patient will be more co-operative, calmer, the treatment path becomes smoother, outcomes are improved, and staff time is saved.
Case Study 1
When the Good Care Group began caring for Steve, in his 80s, he had been taking antipsychotic drugs for 2 years because of his anxiety and aggressive traits.
During the first month of looking after Steve, the SPECAL Observational Tracking (SPOT) technique was employed to discover as much as possible about who he is now, who he was, and about who he might have been had not dementia taken hold. The first month was an unsettling time for Steve as he was suspicious, anxious, unhappy about accepting assistance, and sometimes aggressive.
A pattern of caring for him took shape in the second month when communication gaps were bridged. At the end of the third month, the care formula was developed and working well. Steve was no longer a threat to himself, his wife, and others, and it was decided he no longer required antipsychotic medication. At this time, he was spending each day in a state of calm contentment, free from anxious questioning, frustration, and agitation. Steve felt good about himself and saw he had a rightful place in life again.
As a young man, Steve had been a military pilot and later had continued flying in his own light aircraft. Soon after he first met The Good Care Group personnel, he made a wide circular movement with one arm, saying, ‘I flew round the world, you know.’ This was an extremely enabling statement from Steve, and signs of wellbeing were evident when he said it – he sat straighter, looked at those he was talking to in an assertive but relaxed manner, and smiled.
He repeated the statement many times and by saying it he felt he was conveying who he was proud to be. Although many years had passed since he had piloted a plane, thoughts about flying and his military career were still fresh in his mind. It was found that greeting him with a salute was significantly beneficial; this action indicated that those performing it knew about military matters and were ‘Okay’. Steve stores new information sporadically. Therefore he does not always understand where he is or what he should be doing. This is an immense source of anxiety for him. Linking cues that come from flying, including photographs of planes he has flown, to what is happening today mean he can be given a sense of context, purpose, and pride in himself. For example, a photograph in his bathroom of a plane may be pointed to if Steve needs to undress to have a wash. He remembers undressing for medicals as a pilot, and therefore does not become concerned, as he might otherwise be, about the undressing procedure.
Such cues tend to prove invaluable when non-verbal communication begins to take precedence over verbal skills. The circular arm gesture will carry a message for Steve even after words cease to be used.
- An individual with advancing dementia is likely to have difficulty in making sense of the present
- A visit to a practice may be a disorientating, or even frightening experience for a patient with dementia who faces interactions with strangers in unfamiliar surroundings
- The SPECAL approach enables health staff to build communication bridges, optimize treatment programmes and outcomes, and save time in a practice
Alzheimer’s Research Trust (2010) Dementia 2010:
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Garner P (2008) The SPECAL Photograph Album. SPECAL (Specialized Early Care for Alzheimer’s) www.specal.co.uk
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Hoe J, Thompson R (2010) Promoting positive approaches in dementia care. Nurs Stand 25(4):
Pritchard EJ, Dewing J (1999) A Multi-method Evaluation of a Service for People with Dementia. RCNI Report No 19. Royal College of Nursing Institute, Oxford
Specialized Early Care for Alzheimer’s (2012) Glossary. www.specal.co.uk/info/glossary.htm (accessed 16 March 2012)
Weatherhead I, Courtney C (2012) Assessing the signs of dementia. Practice Nursing 23(3): 114–8