People with disabilities are first and foremost human beings and their behaviour including their challenging behaviour must therefore be responsive to the same basic principles that affect all human beings. (Sigafoos, Arthur & O’Reilly 2003:48)
To remediate problem behaviour it is necessary first to remediate deficient contexts …those relating to environmental conditions and those relating to behavioural repertoires (Carr et al., 1994)
The care of the elderly becomes all the more difficult when individuals develop behaviours that are thought of as difficult for carers. It is imperative that carers can maintain a compassionate and human response to caring, to continue to recognise that which Sigafoos, Arthur & Reilly and Carr stress above: human rights still apply to all persons, no matter their behaviour, age or illness status. It behooves the caring community to recognise and explore alternative ways of caring for the elderly and those with dementia that can alleviate the environmental conditions that lead to problematic behaviour for carers. Solutions can lie in recognising that all behaviour communicates something about the person, and learn to respond in new ways that don’t presume that ‘difficult’ behaviours equate with an intractable and progressive descent into severe dementia.
Alzheimers Australia estimate a quarter of people over 85 years old have dementia and it is “the single greatest cause of disability in older Australians (aged 65 years or older)” (Alzheimers Australia 2011). While a large proportion of the elderly may develop dementia, it is tempting to attribute dementia to all troublesome behaviours in the elderly. The diagnosis of dementia is in itself problematic, the behaviours associated with such a diagnosis have historically been used as a excuse to use illness as the reason for behaviours that don’t meet the needs of the carers agenda. However, behaviour that is labelled “difficult” can be seen as both an attempt to communicate and an expression of distress. It becomes the role of the carer to interpret the difficulties of working with the elderly in a compassionate and person-centred way.
Behaviour can be defined as actions and words that can be observed and recorded by others (Stokes 2000, p18). The thoughts, intentions and feelings of people are not accessible to observers, however people frequently attribute meaning to another’s behaviour that can be mistaken and is fundamentally grounded in the interpreters values and beliefs. The Shannon-Weaver model of communication theory holds that a message has a sender and an intended receiver, with steps of transmission, signal and reception. At any stage after an idea or intention leaves a senders brain can things go wrong. Noise, mode of signal, transmission of reception can fail. For instance we can use unfamiliar words, the wrong language or medium (e.g. writing vs speech) to transmit a message, the receiver may not understand our language, our speech habits or may simply not hear or be able to read. ‘Noise’ adds to the problems of sender and receiver. Rothwell (1999) identifies four kinds of noise that can interfere with communication: physical or external noise such as other people talking; psychological noise that distracts such as hunger, social or emotional needs; physiological noise such as biases, values and assumptions that lead you to assume another’s meaning; and semantic noise which includes difficulties in understanding another diction, accent or wording. With the odds against us, it is little wonder that the elderly have as much trouble as the rest of us communicating successfully. The misinterpretation of ones messages can result in anger and frustration in both carer and patient, and can lead to aggressive behaviours on both sides. The resultant anger and aggression can be attributed erroneously to dementia.
Dementia, as a medical diagnosis, means brain deterioration. It involves a wide range of behaviours measured as ‘deficits’ or ‘excesses’ (Stokes 2000, p 36) and dependent on which part of the brain is damaged. Behaviours attributed to patients with dementia include: memory loss, confusion, personality and behaviour changes (Alzheimers Scotland). There is a biological basis to dementia, such as in alzheimers, “vascular dementia, Lewy body dementia, frontotemporal dementias (including Pick’s disease) and alcohol-related dementias” (Alzheimer’s Scotland) where brain damage can be seen. However, diagnosis in the early stages is not physiologically detectable, rather it is assumed from behaviour, behaviour that could be attributed to other causes including fever from infections, emotional upset or medicines. Those behaviours are seen in the ‘healthy’ population as well as the elderly, however, it is the clustering and worsening of those behaviours that leads to a diagnosis of dementia. Treatment of the person assessed as having dementia leads to assumptions that the person is unable to take care of themselves, does not act from intentions, cannot reason and that the eventual deterioration of the person is inevitable. Stokes (2000) points out that the medical model leads to reductionist thinking, which tends to obscure other possible causes of behaviour and that, “the assumption of an exclusive causal relationship between neuropathology on the one hand and dementia on the other is unjustified” (p45). Stokes, citing Kitwood, says that clinical features of dementia severity do not correlate well with post-mortem examination of the person’s brain, and that in the case of vascular dementia and alzheimers there is “80% of the variance unexplained” (2000, p 45). Indeed, Stokes says that “no two people with dementia are alike”(2000, p 45). So dementia may be both mistakenly diagnosed, or used as a blanket attribution for the behaviour of the elderly that attributes “no blame” to carers or family (Stokes, p47).
In addition to the problems of diagnosis and attribution of behaviours to pathology, those diagnosed with severe dementia will have lucid moments and even when they act in ways not based on reality, their actions can often be intentional and goal directed. It is also the case that remission or ‘rementia’ from dementia-like behaviours can be seen when environmental and social conditions are changed. The biological-medical explanation is clearly not adequate.
Perez, Proffitt & Calkins (2001) say that “disruptive behaviours…usually are not merely the result of dementing illness…something triggers the behaviour” (p4). The literature is replete with anecdotes about people ‘rementing’ when environmental and personal treatment triggers are changed. Stokes (2001) mentions the story of Patrick (p51) who was assessed as having deliberate incontinence and was uncooperative when put on a three hourly toileting regime that involved being accompanied by two staff members who remained present during his toileting. After visits to the toilet where he failed to ‘perform’, he would wet himself. When staff began recognising his right to privacy and dignity as a human being he soon ‘rementia’-ed when he was given toileting privacy. Similarly (p52) Mrs S was persistently wetting herself in the nursing home where she had been toileting normally at home. It was discovered that she had a pre existing aversion to what she perceived to be unhygienic public toilets. Installing disposable toilet seat covers affected a 60% recovery. Attention to their personal needs as an individual, and “disregarding the dementia” affected an end to the challenging behaviour.
Rader, Doan & Schwab (1985) tells the story of “Mary White”, an 83 year old woman diagnosed with “moderate-to-severe” dementia who was a ‘wanderer’, frequently attempting to escape the nursing home in order, she said, to go home and make dinner for her children, who in reality we all grown and no longer needed her help. The nurses response was often to try to dissuade her by “reality orientation” and then to physically restrain her. Upon such treatment she would become violent, angry and yell at staff, who responded by chemical tranquillising. This was a familiar scenario in many nursing homes. Ryden (1999) in Perez et al. (2001) found that such treatment, far from alleviating combative behaviour, was related to “higher levels of physical aggression” (Perez et al 2001, p3).
Mary’s behaviour was neither inappropriate or irrational given Mary’s beliefs, but it was delusional. Rader, Doan & Schwab recommended treating people who appear to be acting irrationally not by reality orientation (which can make them feel ignored “more separate and wrong” p197 and can even be a “coping mechanism” for the person p200), but by engaging them in the problem they are erroneously trying to solve, acknowledging their often strong feelings about those things. This approach will lead to increased connection between carers and their charges, and fulfil the need for validation of their usefulness as human beings.
Isolation from loved ones and lack of meaningful work or activities can lead to challenging behaviour like wandering. Rader, Doan & Schwab (1985) believe that “wandering, confusion and aggression often stem from feelings of loneliness and separation” (p196). Wandering, they say, is a form of “agenda behaviour” that can communicate the persons stressors more clearly than their words. For instance, Rader, Doan and Schwab say that attempting to leave to care for ‘sick children’ may indicate fear or illness in the person themselves, anger is often a reflection of fear and powerlessness, and hitting staff may result from an inability to understand what is expected of them. These three situations they say can be dealt less confrontationally by validation: engaging the person in conversation about the problem, checking their health status (temperature etc.), accompanying them while they attempt to leave, disengaging rather than arguing or forcing them to cooperate when they are aggressive or uncooperative and physically comforting them when they have calmed down. All these things recognise their intrinsic value as human beings and maintain their dignity non-confrontationally (p197). Allowing the agenda-seeking person to express their need and perform their ‘escape’ in the safety of company will be “self-limiting” when the person comes to find validation, safety and belonging in the nursing home environment (p198). It requires reassessing behaviours not as problems, but as expressions of the persons needs. What Rader, Doan & Schwab are describing is what has come to be known as the person-centred approach to care.
Fazio & Mitchell (2008) argue that the continued existence of the ‘person’ is evident, in other words dementia patients remain self-aware, used personal pronouns and could describe themselves, even where they are experiencing memory loss in other areas. This runs contrary to the common belief that dementia and alzheimers in particular results in “loss of self” (Fazio & Mitchell 2008, p54). Even persons with late-stage alzheimers still cared to brush their hair even if they could not identify themselves in a mirror, indicating implicit self-awareness. Recognising the continuing status of the person is vital to compassionate care.
Cherry (2005) describes the importance of developing empathy to the resolving of care challenges. While this may be the intention of every carer, Cherry says it is important that the person being care for also knows this. Empathy can be shown by practising the validation behaviour described in Rader, Doan & Schwab’s (1985) agenda behaviour approach. Cherry goes further to suggest we need to analyse our own assumptions and really listening to what a person is trying to communicate to us: using eye contact, mirroring body language where appropriate, noting our own tone of voice, use of silence and listening reflectively by rephrasing to the person what we think they are saying. For instance in the case of Mary White the carer could have said, “You really care about your children” or “You say you are worried about your children”. Cherry’s “pro social” approach is optimistic that change in behaviour can happen if the person is treated respectfully and with empathy. This ‘unconditional positive regard’ (as coined by humanist psychologist Carl Rogers) makes no judgements about the persons behaviour and creates a ‘safe’ interpersonal environment that fosters belonging.
Garatt & Hamilton-Smith (1995) suggest that the challenging behaviours experienced by carers of people with dementia are typical human reactions to stress and that, “virtually all the behaviours in a person with dementing conditions are based on their past behaviour” (p43). Thus attributing challenging behaviour to dementia is not respecting the person. They emphasise the importance of attempting to understand the person with dementia:
Our research shows that understanding the person with the dementia is essential to uncovering the meaning of behaviour being exhibited. Many of these behaviours may manifestations of stress and they need to be expressed, not controlled (1995, p44).
Knowing something about the personal habits, likes an dislikes and behaviour of the person previous to dementia can provide insight into resolving challenging behaviours. This involves including friends and family in the decision making process.
There is no doubt that caring for the elderly who exhibit behaviours that may endanger their safety or challenge the carers sense of normal is physically and emotionally exhausting for family members and workers caring for them. For family members it is often the sense that the person is no longer the loved one they once knew, and they make efforts to reality orient and remind them of who they were. However, everyone changes. While the speed of change in people with dementia may be disconcerting for carers, it is important for them to be supported to recognise the ongoing humanity of the person.
Alzheimers Australia. (2011). Summary of dementia statistics in Australia. National Facts and Figures 2011. Retrieved April 5, 2011, from http://www.alzheimers.org.au/understanding-dementia/statistics.aspx
Buron, B. (2008). Levels of person hood: a model for dementia care. Geriatric Nursing, 29(5), 324-332.
Cowdell, F. (2006). Preserving person hood in dementia research: a literature review. International Journal of Older People Nursing, 1(2), 85-94.
Dewing, J. (2008). Person hood and dementia: revisiting Tom Kitwood’s ideas. International Journal of Older People Nursing, 3(1), 3-13.
Fazio, S., & Mitchell, D. B. (2009). Persistence of self in individuals with Alzheimer’s disease. Dementia (14713012), 8(1), 39-59.
Gallo, J. L., Schmidt, K. S., & Libon, D. J. (2008). Behavioural and psychological symptoms, neurocognitive performance, and functional independence in mild dementia. Dementia (14713012), 7(3), 397-313.
Haak, N. J. (2002). Maintaining connections: understanding communication from the perspective of persons with dementia. Alzheimer’s Care Quarterly, 3(2), 116-128.
Hill, H. (2008). Talk but no walk: barriers to person-centered care. Journal of Dementia Care, 16(4), 21-24.
Hindley, N., & Gordon, H. (2000). The elderly, dementia, aggression and risk assessment. International Journal of Geriatric Psychiatry, 15(3), 254-259.
Rader, J., Doan, J., & Schwab, M. (1985). How to decrease wandering, a form of agenda behaviour. Geriatric Nursing, 6(4), 196-199.
Rothwell, J. D. (1999). In the company of others: An introduction to communication: McGraw-Hill.
Smith, M., & Buckwalter, K. (2005). Behaviours associated with dementia: whether resisting care or exhibiting apathy, an older adult with dementia is attempting communication. Nurses and other caregivers must learn to “hear” this language. Insight: The Journal of the American Society of Ophthalmic Registered Nurses, 30(4), 23-31.
Stokes, G. (2000). Challenging behaviour in dementia: a person-centred approach. Milton-Keynes: Speechmark.
Victorian Government (2011). Dementia friendly environments: A guide for residential care. Person-centred care. Retrieved April 5, 2011, from http://www.health.vic.gov.au/dementia/strategies/person-centred-care.htm
- Acting out dreams a ‘key indicator’ of Lewy body dementia (time4sleep.co.uk)
- The Enigma of Early-Onset Dementia (everydayhealth.com)