The movement towards person-centredness within dementia care has undoubtedly transformed the way people with dementia are viewed, treated and respected within healthcare.1 However, the way personal expressions, or more commonly ‘behaviours’, are viewed, still seems to be stuck within the biomedical lens of behavioural and psychological symptoms of dementia (BPSD) model. The BPSD model noticeably views the person as having a dementia diagnosis before being seen as a unique individual with values, beliefs, emotions, a life-history, likes and dislikes. Therefore, there is a clear need for a re-evaluation of ‘challenging behaviours’ in nursing and personal expressions need to be viewed, assessed and responded to in ways which are person-centred, support overall wellbeing and encourage persons to flourish as individuals.
Personal expressions are commonly branded as ‘agitated behaviours’. Cohen-Mansfield and others, identified 29 different types of ‘agitated behaviours’ in persons living with dementia (see box 1 below).2 Other labels have been used for these expressions such as ‘problem behaviours’, ‘disruptive behaviours’, ‘challenging behaviours’, ‘distressed behaviours’ and ‘inappropriate behaviours’. Evidence suggests that it is still common for older persons with dementia to be prescribed antipsychotic and sedative medications to ‘control’ and ‘treat’ personal expressions. In more recent times, there has been a greater emphasis on non-pharmacological interventions such as sensory practices, psychical therapy interventions and structured care interventions.3 Even though these interventions are undoubtedly a better option than using medication,they still seek to ‘treat’ personal expressions; thus, conform with the behavioural model which classifies personal expressions as unnatural. Consequently, even non-pharmaceutical approaches can conflict with values of person-centred care.
Pacing Grabbing Cursing/Verbal aggression Biting Constant request for attention Repetitious sentences/questions Hitting Kicking Trying to get to a different place Pushing Making strange noises Performing repetitious mannerisms Scratching Tearing Things General Restlessness Complaining Negativism Handling things inappropriately Hiding things Hording things Eating inappropriate substances Spitting Verbal sexual advances Physical sexual advances Intentional falling Throwing things Inappropriate robing or disrobing Screaming Hurting oneself or others.
So much energy has been put into the attempt to monitor and manage ‘challenging behaviours’ in persons living with dementia. The majority of care environments will adopt one of the many behavioural assessment tools available for nurses.3,4 Assessment tools were designed to be used for caregivers such as healthcare professionals and in some cases, family members to assess and evaluate the ‘inappropriate/challenging behaviours’ of people living with dementia. However, what is ‘inappropriate’ and/or ‘challenging’ can be highly subjective and therefore, the assessment tools run the risk of being inaccurate as the result depends on what the instrument user is regarding as ‘behavioural issues’ and what they, and the healthcare culture, regard as ‘inappropriate’. Additionally, these assessment tools do not involve the person living with dementia and do not encourage the caregiver to discover what is going on in the world of the person living with dementia and have a deeper understanding of their emotional needs.
‘Behavioural’ assessment tools only go as far as describing patterns of personal expressions, but even at that, these instruments are dependent on the caregiver conducting the assessment. Additionally, each of the assessments tools and thus, the intervention to ‘manage the behaviour’ have been built on the assumption that displays of emotion and feelings are unnatural and are a result of having dementia. We need to understand and embrace our sensuous capabilities, which appreciates that anyone and everyone has emotions, sensations, desires and needs, and will express themselves according to their feelings, sensations and (dis)pleasures. The clear difference is persons without a dementia diagnosis, or do not have any cognitive impairments are usually able to articulate through language their emotions and reasons behind their expressions, or even constrain any sign of emotions altogether.
If a person with dementia experiences distress, nurses should speak directly to the person whenever possible.4 The answer may lend important clues to an unmet need or how the person is feeling in a specific moment of time or situation. You may also discover that the expression is perfectly normal under the circumstances in which a person may find themselves in.4 For instance, if we reflect on entering a healthcare environment, it becomes clear why persons with dementia may express feelings of distress and anxiety in healthcare settings. I encourage you to imagine that you have just entered a healthcare setting without any recognition to what a hospital or a nursing home is or why you were there. You may envisage a busy place with many strangers talking to you, touching you, removing your clothes or even assisting you with toiling or personal care. People are constantly rushing around, often not listening, and it can feel claustrophobic and difficult to make sense of. You may feel lost, alone or vulnerable. The various noises of people talking, telephones ringing, the nurse call buzzers and different machines bleeping can be very overwhelming. The smells can be overpowering, and it can be a difficult environment for sense making. However, due to the effects on their memory, judgement and other cognitive abilities, a person with dementia might not feel familiar or have an understanding of their surroundings, including the environment and the people around them.1,4
Coming from a position of person-centredness, I argue that there is always an underlying meaning to the way someone is expressing themselves. No bodily movement or expression from someone living with dementia is meaningless; they are responding to what they are perceiving and how they are feeling. The fact that the person might not be able to articulate the reasons behind their actions is not an excuse to label them as ‘challenging’ and to offer psychotropic medications or psychosocial interventions. We all experience a wide range of emotions and our emotional responses differ depending on the individual, their environment and experience; and people with dementia are no different.
It is important to consider medical reasons which could result in uncommon emotional responses from persons living with dementia. For example, a person who is experiencing distress could be in pain or experiencing ill health. However, medical illness is not the most common reason for someone experiencing distress.4 There are usually environmental and/or experiential reasons for personal expressions in persons living with dementia. As nurses, we need to make efforts to view the world from the perspective of the person in order to find clues to their expressions. A person with dementia’s brain continues to be very active processing information, interpreting their surroundings, and finding new ways to work around the blocked pathways caused by dementia.4 The personal expressions we see are the results of a persons’ adaptation mechanisms, problem-solving skills, or using novel ways to communicate their needs, emotions and desires. A persons with dementia’s world becomes a much more intimate and sensuous place. When persons living with dementia have a decrease in cognitive ability and linguistic communication skills, they are sometimes unable to articulate what they are perceiving, feeling and thinking, so they use other forms of communication, such as using their bodies to express themselves.5,6
One of the biggest barriers to understanding is peoples’ inability to imagine how they would feel in a similar situation. Putting oneself in the other person’s shoes is a valuable tool to help the participant suspend their assumptions and simply experience the feeling. Nurses should not judge the expression, but rather try to understand it through the eyes of the person. We need to be sympathetically present, which is a way of being that recognises the uniqueness of people and embraces a meaningful relationships between the person with dementia and the caregiver.7To sympathetically understand a person with dementia’s emotions, situation and experiences, is to build a healthful relationship and create a connection between the person and the nurse.7
There needs to be a consideration that persons living with dementia are sensuous beings who are experiencing the world around them at a more emotional level. I argue that nursing assessment and nursing care needs to reflect this worldview. Responding to someone’s expressions should not be viewed as a ‘problem’ or a ‘challenge’, but an opportunity to have a deeper understanding about how someone with dementia is feeling and to provide person-centred care. When it comes to personal expressions in people living with dementia, we are still on a BPSD pathway that is heading towards a biomedical approach that suggests we must manage, control and minimise expressions from people with dementia. To provide person-centred care, we do not only need to change the way we address personal expressions, but we need to change direction away from the viewpoint of the BPSD model to a destination that values the way people living with dementia express themselves.
Dr Rennie is also an associate fellow of the Centre for Person-centred Practice Research.
- McCormack, B., van Dulmen, S., Eide, H., Skovdahl, K. and Eide, T. Person-Centred Healthcare Research. Chichester:Wiley Blackwell;2017.
- Cohen-Mansfield, J., Marx, M. S. and Rosenthal, A .S. 1989. A description of agitation in a nursing home. Journal of Gerontology. 1989;44:77-84.
- Scales, K., Zimmerman, S. and Miller, S. J., 2018. Evidence-based Nonpharmacological Practices to Address Behavioral and Psychological Symptoms of Dementia. The Gerontologist. 2018;58:88-102
- Powers, G. A., 2017. Dementia Beyond Drugs. Baltimore: Health Professions Press;2017.
- Domenico, T., Bodily Communication: A Brief Summary. Knowledge Culture. 2013;6;34-40.
- Kontos, P., 2005. Embodied selfhood in Alzheimer’s disease: Rethinking person-centred care. Dementia: The International Journal of Social Research and Practice. 2005;4:553–570.
- McCormack, B., McCance, T., Bulley, C., Brown, D., McMillian, A. and Martin, S. Fundamentals of Person-centred Healthcare Practice. Chichester:Wiley Blackwell;2021