Art & science | cognitive impairment

Improving communication when caring for acutely ill patients with dementia Cliff Kilgore explains how person-centred care and multiprofessional training can help staff identify if an individual’s health is deteriorating Correspondence [email protected] Cliff Kilgore is advanced practitioner, intermediate care, Dorset HealthCare University NHS Foundation Trust, Poole, Dorset Date of submission December 22 2014 Date of acceptance March 23 2015 Peer review This article has been subject to double-blind review and has been checked using antiplagiarism software Author guidelines journals.rcni.com/r/ nop-author-guidelines

Abstract People living with dementia have complex needs, which may be compounded when they develop an acute illness. It is vital to recognise any deterioration in a patient and respond appropriately to prevent serious complications and, in some cases, mortality. It is necessary for all healthcare professionals to develop assessment skills that take account of potential communication difficulties. This article reviews the literature on communicating with people with dementia, and considers the main issues involved in managing patients with an acute illness who are already living with dementia. The aim is to ensure that nurses consider how they communicate in these situations and to recognise the benefits that can be gained by healthcare professionals and patients from enhanced communication. Keywords Acute illness, assessment, communication, dementia, education IN THE UK there are an estimated 820,000 people who have dementia and this figure is set to increase (Elkins 2012). People living with this chronic condition face many challenges but when they experience an acute illness the complexity of care increases (Royal College of Physicians (RCP) 2012). Subsequent healthcare needs are multifaceted, but because of the nature of dementia, effective communication is crucial. De Vries (2013) suggested that skilful communication with people who have dementia is essential for the provision of high quality care. In acute illness, patient response and behaviour are often important indicators of deterioration. If staff

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do not attain the ability to communicate effectively then clues and potentially life-saving responses might be missed. Therefore, it is important to understand how to communicate effectively with a patient who is acutely ill and has an existing diagnosis of dementia, whatever the healthcare setting. It is also important to recognise that when a patient presents with a new ‘confusion’ it is not necessarily dementia; acute delirium is a condition that affects many older people when experiencing a health crisis.

Deterioration Dementia is a degenerative disease that affects cognition and function. As a progressive syndrome, it results in changes to neuronal and neurochemical activities that control abilities such as language and communication in its wider form. Loss of communication skills as a result of the disease means that the person with dementia may find it difficult to be understood and to understand (Watson et al 2012). At the same time, some people with dementia can experience moments of lucidity, which may cause carers or healthcare professionals to interpret previous communication difficulties as ‘faking’ or exaggeration (Family Caregiver Alliance/ National Center on Caregiving 2005). This may lead to a belief that some patients are being deliberately uncooperative because of their variable cognition. Education programmes designed to help staff recognise and respond to early acute deterioration have been developed using standards based on the National Early Warning Score (RCP 2012). They teach staff to use clinical readings and information based on communication to determine if a patient is deteriorating and at risk of further potentially life-threatening conditions such as sepsis. However, May 2015 | Volume 27 | Number 4 35

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Art & science | cognitive acute careimpairment Varnam (2011) suggested that many people with dementia experience a slowing of response to stimuli and environment. This may result in a failure by the patient to understand and communicate their needs, including thirst, hunger, pain or even deterioration in their wellbeing. Peacock et al (2012) suggested that care assistants did not always link a person’s injury with potential pain or the possible increased confusion that it might cause. In their study, staff were able to identify pyrexia as a clue to problems and change in a person’s emotional state to suspected infection. However, the unpredictability of behaviour meant that staff required good knowledge of the individual with dementia to be able to detect subtle changes. Peacock et al (2012) concluded that relationship was one of the most important factors in recognising variations in behaviour that could suggest a physical illness. They also identified that even with good relationships deterioration in cognition was not always acted on, even though staff understood that people with dementia were at high risk of physical deterioration. The difficulty faced by many clinicians in trying to determine if any deterioration has occurred is that they often lack historical and social contexts for patients and have to rely on information provided by families, friends, carers and other health or social care professionals who know patients well. Valeriani (2011) highlighted the need to ensure that clinicians understand and detect deterioration of clinical symptoms in patients with memory disturbance. Boyd et al (2008) indicated that the prognosis for older patients recovering from acute illness was poor with only 30% returning to their pre-morbid levels of function. This resulted in new or further disability causing further stress for patients, increasing carer burden and potential financial pressures as the need for paid carer support increased (Boyd et al 2008). Delirium There are other complexities involved in caring for a patient with acute illness and dementia. Steis et al (2012) suggested that there was an increased risk of delirium in older patients with pre-existing brain disease. The National Institute for Health and Care Excellence (NICE) (2010) guideline on delirium also recognised this associated risk. It can be difficult to differentiate delirium from dementia, and delirium is likely to exacerbate any existing cognitive problems (Steis et al 2012). Preventing physical deterioration and subsequent delirium by identifying triggers and changes is crucial. Peacock et al (2012) indicated that delirium is significantly under-recognised by nurses, particularly in patients who have existing dementia. They also suggested that other health problems 36 May 2015 | Volume 27 | Number 4

such as depression are wrongly identified as part of existing dementia, rather than a new deterioration and highlighted the importance of identifying subtle changes in patients’ behaviour as crucial in making such distinctions. De Vries (2013) also recognised that changes to cognition can be wrongly associated with dementia and recommended greater awareness among healthcare professionals on differential diagnosis. Formal assessments can be used to diagnose delirium. These potentially enable clinicians to identify new problems and also ‘acute on chronic’ conditions, where a person’s pre-existing condition is worsening, which is particularly useful for patients with pre-existing dementia (Behroozi et al 2007).

Communication Communication is a connective mechanism and enables interactions that establish and change relationships via the exchange of information (Watson et al 2012). In health care, communication enables staff and patients to understand suffering or deterioration associated with disease or injury. Loss or impairment of this ability to communicate can have significant implications for the wellbeing of patients with dementia, because they either fail to engage the episodic memory that provides context or semantic memory that affects factual information (Watson et al 2012). This could result in a patient failing to acknowledge their health is deteriorating or even telling healthcare staff the wrong information. Therefore, it is not unusual for staff to report problems with understanding patients who have a pre-existing dementia either because of lack of basic understanding or because of altered patient behaviour. Watson et al (2012) suggested that patients with dementia may respond differently to ill health and even present with agitation or violence as a result of their inability to communicate their healthcare needs effectively. The importance of the need to understand patients in relation to acute illness and the potential for missing deterioration is stressful for nurses. Many studies on caregiver burden have been undertaken but most of these concern informal carers, such as husbands, wives or other family members (Watson et al 2012). Hobson (2012) discussed the unique role that healthcare assistants (HCAs) have when caring for patients with dementia and suggested that because they tend to focus on a person’s verbal skills, they may miss changes to physical health. This is significant, given that HCAs provide ‘hands-on care’ for many patients. Hobson (2012) indicated that unless patients are well known to nurses, they might not realise that the situation patients are describing occurred 50 years ago, for example, and this can lead to a delay in treatment. NURSING OLDER PEOPLE

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The need for improved communication arises from recognising the loss of verbal and other communication skills by the person with dementia. With the pioneering work of Kitwood and Bredin (1992) and Kitwood (1997), the move towards a person-centred approach makes most sense in terms of improving communication (Downs 2013). Kitwood’s (1997) ideas on a person-centred approach involved treating people living with dementia as individuals, recognising that they should be at the centre of a decision, considering what they would have wanted and understanding their experiences. This results in treating all patients with equal respect, whatever their level of disability or illness. Staff adhering to this ethos gather information from family and friends about the person’s likes and dislikes and take into consideration the importance of the individual’s own interpretation of their subjective reality. Downs (2013) suggested that Kitwood’s (1997) concepts can be applied to any setting and that focusing on understanding a person’s experience is essential to ensuring person-centred care. NICE (2006) also recognised the value of a person-centred approach to caring for people with dementia, including communication. Elkins (2012) suggested that in advanced dementia, problems with communication could make some medical interventions difficult or even impossible to perform. She further discussed the idea of establishing a management model for people with dementia that enables care provision and promotes the individual. This management model involves building a profile of the person with dementia to include likes, dislikes and actions that make the individual feel comfortable. This type of care planning needs also to focus on the individual’s needs and in particular who the person is, because understanding this will help the nurse communicate in expressive and receptive terms.

Strategies for effective communication Savundranayagam et al (2007) considered the strategies staff use when engaging with people with dementia. Some of their findings suggested that modifying speech and language such as speaking in a high-pitched voice, exaggerated intonation and exaggerated praise were viewed negatively and resulted in withdrawal. There was much greater success when modifications were made to communication that took into account personal history and specific communication strengths in line with Kitwood’s (1997) aims of personalisation. Ensuring personalisation in any healthcare setting will mean that staff who are involved in assessing a patient with dementia who is deteriorating during acute illness try to identify that person’s life history, NURSING OLDER PEOPLE

values and preferences to enable all staff to engage with that patient in the most meaningful way. To achieve this, families and carers should also be involved (Watson et al 2012). Other techniques include using closed questions or inclusive statements such as ‘Here’s your tea with the two sugars that you like’ (Savundranayagam et al 2007) or memory aides, such as photographs or items that are familiar and may put the person at ease, to help the individual communicate their needs (Gentry and Fisher 2007). Inappropriate statements should not be corrected but rather used to try to understand the meaning behind them (Hobson 2012). For example, if a person with dementia asks for their mother or father, they may need reassurance because a parent is the person they associate with reassurance. Similar problems may be experienced with patients requesting to go home when they are home. Acute illness can cause fear and some people will look to what they used to do when they were afraid. Asking to ‘go home’ could be a way of communicating that they are fearful due to a new or deteriorating health problem (Hobson 2012). Non-verbal communication strategies that staff can use are body language and physical contact, eye contact, reducing sudden movements or tense expressions because this may be upsetting to a person with dementia. Physical contact can help to reassure the person – touching their arm or stroking the back of their hand can be helpful. However, it is important to ask family or friends if touch is an appropriate way to communicate non-verbally and this brings the discussion back to person-centred care. The benefits of increased understanding have implications for recognising ill health or deterioration. When a patient’s behaviour changes, such as becoming withdrawn or agitated, this can be explained as a means of the patient communicating deterioration and care can be adjusted accordingly (Peacock et al 2012). Even the ability to know when someone is thirsty, in pain or tired can influence the care or rehabilitation provided (Peacock et al 2012). The greater challenge is with patients who have advanced dementia because it has been suggested that greater severity of cognitive impairment corresponds to a lower rate of somatic symptoms reported (Valeriani 2011).

Education Harrison-Dening (2013) suggested that good multiprofessional teamwork is the most effective way of caring for a person with dementia. It is therefore crucial that all staff are trained to deal with the complexities of this condition, including deterioration. Developing educational programmes is necessary, but challenging, due to the variable May 2015 | Volume 27 | Number 4 37

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Art & science | cognitive impairment course of the disease process. Interprofessional knowledge and collaborative working are essential (de Vries 2013). Wesson and Chapman (2010) discussed a scheme set up across Cornwall to deliver staff education on dementia care and suggested that education needs to be widespread. The scheme aimed to ensure that all staff understood the complexities of dementia and emphasised the importance of highlighting any communication deficits at handover (Wesson and Chapman 2010). Iliffe and Manthorpe (2004) indicated that professional education on dementia is changing from a largely diagnostic emphasis to a more inclusive view of the condition as a complex disability. They suggested that multiprofessional training has significant benefits because of shared experiences during the teaching sessions and that clinical staff will often prefer education that links to practice. They also encouraged a model of collaboration, as all who attended the sessions recognised the need for ‘other professionals’ to be involved in dementia care. However, they highlighted the potential problem of some staff demonstrating avoidance behaviours in dementia care, such as only being involved if they have a screening tool or seeing certain roles as specific to ‘nursing’, ‘therapy’ or ‘doctor’, rather than seeing the patient as a whole. It may be beneficial to patient care for all nurses to recognise that they have equal responsibilities and seek to obtain equal skills and knowledge to overcome this problem. As the staff involved in the training were all motivated and chose to attend, this may have affected the results.

Kitwood (1997) considered training as a way to develop reflective practitioners, with the view that this would improve the care of people living with dementia. There is a need to train staff but also to challenge healthcare professionals to reflect on their communication skills (de Vries 2013). De Vries (2013) even suggested using colleagues to observe communication practice with a patient and then helping the practitioner to reflect on this through a supportive learning environment. This form of clinical supervision has been helpful in many areas of practice (Rowe et al 2013).

Conclusion This article has considered the complex needs of people living with dementia who experience an acute health emergency and the challenges this brings for nurses who need to provide care. Communication is a crucial part of this care and therefore ensuring this is effective and meaningful is a vital part of the nurse’s role. The strategies discussed are not exhaustive but should encourage nurses to start to consider how they communicate with people living with dementia. Education and training are essential as increasingly nurses will be required to manage the care of patients with this condition during phases of acute illness, particularly as the number of people living with dementia in tandem with other diseases increases in the coming decades (Elkins 2012). Staff must ensure they are able to communicate effectively with patients with dementia so they can recognise and respond appropriately to acute illness and the subsequent risk of deterioration.

Online archive For related information, visit our online archive and search using the keywords Conflict of interest None declared

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Gentry R, Fisher J (2007) Facilitating conversation in elderly persons with Alzheimer’s disease. Clinical Gerontologist. 31, 2, 77-98. Harrison-Dening K (2013) Dementia: diagnosis and early interventions. British Journal of Neuroscience Nursing. 9, 3, 131-137. Hobson P (2012) Communication: making sense of what people with dementia say. British Journal of Healthcare Assistants. 6, 7, 334-337. Iliffe S, Manthorpe J (2004) The recognition of and response to dementia in the community: lessons for professional development. Learning in Health and Social Care. 3, 1, 5-16. Kitwood T (1997) Dementia Reconsidered: The Person Comes First. Open University Press, Buckingham. Kitwood T, Bredin K (1992) Towards a theory of dementia care: personhood and well-being. Ageing and Society. 12, 3, 269-287.

National Institute for Health and Care Excellence (2006) Dementia. Supporting People with Dementia and Their Carers in Health and Social Care. Clinical guideline 42. www.nice.org. uk/guidance/cg42/evidence/cg42-dementiafull-guideline-including-appendices-172 (Last accessed: April 7 2015.) National Institute for Health and Care Excellence (2010) Delirium: Diagnosis, Prevention and Management. Clinical guideline 103. NICE, London. Peacock R, Hopton A, Featherstone I et al (2012) Care home staff can detect the difference between delirium, dementia and depression. Nursing Older People. 24, 1, 26-30. Rowe M, Frantz J, Bozalek V (2013) Beyond knowledge and skills: the use of a Delphi study to develop a technology-mediated teaching strategy. BMC Medical Education. 13, 51. Royal College of Physicians (2012) National Early Warning Score (NEWS): Standardising the Assessment of Acute-Illness Severity in the NHS. RCP, London.

Savundranayagam M, Ryan E, Anas A et al (2007) Communication and dementia: staff perceptions of conversational strategies. Clinical Gerontologist. 31, 2, 47-63. Steis M, Prabhu V, Kolanowski A et al (2012) Detection of delirium in community-dwelling persons with dementia. Online Journal of Nursing Informatics. 16, 1. http://ojni.org/issues?p=1274 Valeriani L (2011) Management of demented patients in emergency department. International Journal of Alzheimer’s Disease. http://dx.doi.org/ 10.4061/2011/840312 Varnam W (2011) How to mobilise patients with dementia to a standing position. Nursing Older People. 23, 8, 31-36. Watson B, Aizawa L, Savundranayagam M et al (2012) Links among communication, dementia, and caregiver burden. Canadian Journal of Speech-Language Pathology and Audiology. 36, 4, 276-283. Wesson L, Chapman B (2010) A dementia education scheme. Nursing Older People. 22, 2, 22-25.

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Improving communication when caring for acutely ill patients with dementia.

People living with dementia have complex needs, which may be compounded when they develop an acute illness. It is vital to recognise any deterioration...
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