Significant numbers of people in the UK are living with dementia. In the final stages of dementia, individuals may experience a loss of verbal language ability. All staff in general practice are in a key position to engage with individuals using non-verbal communication methods. Adaptive interaction is one such method, which is simple to initiate, and in doing so offers a lifeline to help prevent social isolation.
Data from Alzheimer's Research UK indicate that there are currently 850 000 people estimated to be living with dementia in the UK, and this number is predicted to rise to 1.2 million by 2020 and to 1.9 million by 2045 (Prince, 2014). The cost to the health and social care sector is running at £11.9 billion and is more than cancer and heart disease combined (Luengo-Fernandez, 2015). There is evidence to indicate that one-quarter of hospital beds are occupied by people with dementia, and 20% of hospital admissions in people with dementia are for preventable conditions (Lakey, 2009). Therefore, it is clear that in practice there is significant ‘work to do’ to address this growing national concern. Staff within general practice are in a key position to detect problems, review patients, and support individuals and carers as dementia progresses. The focus on non-verbal communication becomes increasingly important as dementia develops. This article aims to examine how the adaptive interaction approach, developed at St Andrew's University, could be utilised during consultations, to converse with individuals with verbal language impairment.
Dementia is described as ‘a syndrome which may be caused by a number of illnesses in which there is a progressive decline in multiple areas of function, including decline in memory, reasoning, communication skills and the ability to carry out daily activities’ (Department of Health and Social Care (DHSC), 2009, p.15). There are a number of different sub-types that sit under the umbrella of dementia, and these include:
- Alzheimer's disease (AD)
- Vascular dementia
- Dementia with Lewy bodies (DLB)
- Fronto-temporal dementia
- Mixed dementia.
These subtypes present with different symptoms (see Table 1). The progression of the different types of dementia varies. However, there are three common stages to the progression of the condition
- Early-stage dementia, which may present as slight confusion, short-term memory loss and anxiety. It can often be misinterpreted as stress or natural ageing processes
- The middle-stage, in which the individual is becoming more forgetful and may at times be distressed and angry as frustration grows
Late-stage dementia, in which the individual may become unable to recognise familiar people, objects or surroundings. They may have difficulty maintaining their diet and going to the toilet. As the condition progresses they have a gradual loss of speech.
The picture of dementia in general practice
The loss of function causes distress for individuals with dementia and affects their quality of life significantly, and for this reason, early diagnosis is important and highlighted within the Dementia Strategy (DHSC, 2009). An early diagnosis helps to ensure that individuals can receive appropriate support and help in an early stage of their dementia, rather than later when they are unable to forward-plan successfully (Goodwin et al, 2010). Yet, in the UK, diagnosis often occurs late in the illness due to a number of factors; the individual may be scared or in denial, and reluctant to report symptoms. This is coupled with a wide variation across practices in terms of an early diagnosis, with many GPs feeling that a diagnosis will be too distressing for the individual and their carers, or will not add any benefit to their lives (Goodwin et al, 2010). These delays in diagnosis result in the UK being in the bottom third of European countries for performance in terms of early diagnosis (Knapp et al, 2007).
The focus of dementia care at present is on ‘living well’ with dementia. There are a number of measures that practices can undertake to improve the quality of dementia care, which are outside the scope of this article. However, the annual dementia review, which is undertaken as part of the dementia Quality and Outcomes Framework (QOF), offers a good starting point.
This review can be undertaken by anyone with the required skills and knowledge within the team (Yorkshire and Humber Strategic Clinical Networks, 2015). Nurses and healthcare assistants in a primary care setting are well placed to identify health and wellbeing issues early on for individuals with dementia (House of Commons, 2016), given that in any one practice there may be between 12 and 15 individuals on each GP list at differing stages of dementia. However, research indicates that nursing and care staff often find the condition challenging (Travers et al, 2013). In terms of primary care, health professionals, care staff and receptionists are often the first point of contact for individuals with dementia (Collier, 2014) and can offer a lifeline for individuals who are struggling and becoming isolated due to the loss of cognitive and language ability. Dementia seldom travels alone and the complexity of the condition, coupled with the frequent presence of co-morbidities within this group, necessitates effective communication. This in turn prevents further deterioration and enables effective referral to other services.
‘As language ability declines in people with advanced dementia, then health professionals and caregivers are able to use the fundamental communication skills left to match and mirror the rhythms of behaviours to speak to the other person.’
Verbal communication difficulties
Individuals with dementia typically experience a decline in their cognitive and verbal abilities (Deary et al, 2009). Conversations become more demanding, and towards the latter stages of the disease, verbal production may decline significantly (Ellis and Astell, 2017). As these verbal language skills decline then so do opportunities to participate in social engagement (Bowie and Mountain, 1993). The individual is often ignored (Kitwood, 1997), even by their friends, and attempts at communication are often assessed as unfathomable. This results in further social disengagement and a continued decline in their condition (Fratiglioni et al, 2004). Quite often nursing, care staff and others may feel uncomfortable during attempts to interact with people living with dementia. They may seek answers from caregivers, rather than the individual themselves, if they feel the individual lacks the necessary skills, expecting those with impaired verbal functioning not to be able to engage in meaningful conversation (Davis and Guendouzi, 2014). Yet, continual communication is fundamental to maintaining ‘personhood’ and preventing further social isolation. The challenge for staff in primary care practice is to maintain the level of interaction and find new ways of communicating that will engage the individual and help to identify their thoughts, establish mood, and give insight into their needs, wishes and difficulties, which is at the heart of a person-centred approach to dementia care (Kitwood, 1997).
Different language impairments are associated with different types of dementia (see Table 1); however, there may also be similarities in language impairments within the types (Klimova and Kuca, 2016). Studies indicate that language impairments can begin at different stages of the condition depending on the dementia subtype. In addition to this, a number of different factors have been identified which affect language deterioration. These can include level of education (Stern et al,1999), and the mental state and mood of the individual (Lyketsos et al, 2011). The speech and language impairments experienced may initially include a decrease in vocabulary or slurred speech. Following this, the individual may progress to a total loss of comprehension and speech as the disease process advances. Finally, this may result in the individual becoming detached, unreachable and isolated unless other alternative communication strategies are employed.
Intensive interaction (II) and adaptive interaction (AI)
Adaptive interaction (AI) has been identified as an effective strategy for individuals with a loss of verbal ability. It is derived from intensive interaction (II) which was originally developed as a teaching tool in schools (Brooks and Patterson, 2010). The II approach has been utilised within Learning Disability (LD) and Special Educational Needs (SEN) for a number of years as a communication strategy for those individuals with severe learning disabilities. The benefits of II are well researched (Jeffries, 2009), and the concept of the approach originates from language acquisition developed in young children, which includes eye gazing, emotional expression and movement. It is based on infant–caregiver models, in which the mother or father replicate the behaviours of the baby and may widen their eyes, change the shape of their mouths or nod their head to mirror the behaviour of the child (Jeffries, 2009). II enables caregivers to enter into the world of individuals traditionally isolated from social interaction by their lack of verbal language skills.
Researchers from the University of St Andrews (Ellis and Astell, 2017) identified that unlike II, which relies on parts of the previous interactions being remembered, each communication episode for someone with dementia is new and fresh due to memory loss and requires adaption. Due to loss of cognitive ability and memory impairment, no assumptions can be made that particular gestures, smiles or movements will be remembered by the individual and therefore unlike II, in which the memory assimilates the repertoire of communication behaviours, each time AI is used to communicate it is as though it is for the first time.
As language ability declines in people with advanced dementia, then health professionals and caregivers are able to use the fundamental communication skills left to match and mirror the rhythms of behaviours to speak to the other person. The purpose of this is to converse with the person in an individual and non-verbal way. It is worth noting, however, that more often than not, the individuals will prefer to converse using the most sophisticated form of communication they have, i.e. speech over pointing. If speech is not available then the individual may rely more on movement and facial expressions (Ellis and Astell, 2017). Using this non-verbal approach widens the scope of interaction, and can also prevent the individual feeling embarrassed when trying to vocalise words they are unable to (Hubbard et al, 2002). Through the dementia process, a shared language develops, and may contain a whole repertoire of different communication behaviours (see Table 2). Ellis and Astell (2017) noted that when this technique is used then individuals display new levels of interest in others, physical contact with those around them improves, and they laugh more readily.
For AI to be used effectively, it is vital that additional non-verbal communication skills must also be used at the same time. SOLER (Table 3) (sit squarely, open posture, lean towards the other, eye contact, relax), devised by Egan (2001), is used widely within nurse education and offers a model of non-verbal communication that provides an effective base for AI to work. It stands to reason, because of the mirroring and matching technique fundamental to AI, that it is necessary to sit and squarely face the individual, while maintaining an open posture with arms unfolded. Communication will be enhanced by leaning forward, relaxing and maintaining eye contact. The correct positioning of hands and maintenance of eye contact is vital given that many repertoires of behaviour within AI involve eye gazes and hand movements.
Mrs Elsie Smith is attending the practice with her daughter. Elsie's verbal language ability has declined over the last few months. The nurse, Liz, has met Mrs Smith previously and despite always talking directly to Elsie, Elsie's daughter finds it difficult not to speak for her. On this occasion Liz thinks she may try the Adaptive Interactive (AI) method of communication as Liz recognises that Elsie has limited opportunity to interact and is at risk of further social detachment. Liz uses the SOLER approach (Table 3) and sits opposite Elsie with the table next to her. She places her arms in front of her and looks and smiles at Elsie. Elsie begins to tap on the table so Liz adopts the AI approach and matches her behaviour by tapping on the table. Elsie smiles and so Liz smiles back. Elsie looks directly at Liz and instead of looking at both Elsie and her daughter in turn Liz now meets Elsie's gaze. Elsie moves her hand and touches Liz’ hand and smiles. Liz reciprocates by touching Elsie's hand and also smiles. Elsie laughs and her daughter comments that Elsie appears to be enjoying the consultation for the first time in a long time. While she continues to maintain eye gaze Liz asks Elsie clearly and slowly if she has a pain in her wrist. Elsie nods. Following the consultation, Liz documents the exchange in Elsie's notes commenting that Elsie uses eye gaze, touch and smiles within her personal repertoire of non-verbal communication skills.
People living with dementia may have few opportunities to engage in a social context once language production skills have declined. Within dementia care we are just beginning to see the benefits this approach can offer, yet so far, most observations of this technique in action have been within a care home setting (Ellis and Astell, 2017). However, it cannot be denied, that contact with nursing, care, and administration staff within primary care provides one of those rare opportunities for individuals to engage, if staff are responsive to the exploration of the personal repertoires of communication. Not every person with dementia will respond to this approach and not every member of staff will feel comfortable using this technique.
Yet, for the one person with dementia that does respond, it may ignite a spark of a memory, and they then may experience a fleeting moment of lucidity (Normann et al, 2006). If nothing else, AI has the potential to offer more empathetic interactions attuned to the individual, in a way that ensures they can continue to be engaged, and feel that sense of social connection and belonging to the world which is so important to us all.
This article was originally published in Practice Nursing
Linda Currie, Lecturer (adult nursing), University of York
- Individuals with dementia may experience verbal language production loss and this relates to the type of dementia, the stage of dementia, and the mental state of the individual, in addition to a lack of opportunity to engage with others
- Early diagnosis is important for the individual in ensuring they receive the correct help and support at the right stage
- Staff in general practice are well-placed to participate in new, creative and different non-verbal ways of communicating with people living with dementia to avoid increasing social isolation and further detachment
- Adaptive interaction is a simple technique that can be incorporated into other non-verbal approaches during consultation
- No two individuals will display the same repertoire of communication behaviours
- This approach may be more effective in some patients than others. However, it offers all patients the opportunity to engage and interact, which is vital to the personhood of that individual
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