Challenging the behavioural paradigm: the right to express yourself by Leah Bisiani MHlthSc., RN1., Dementia Consultant

Reprinted with kind permission

Martin Luther King: “ People don’t get along because they fear each other. People fear each other because they don’t know each other. They don’t know each other because they have not properly communicated with each other”.

Stereotypes based on assumptions become part of how we think, how we believe others should act at certain times of their life and how we believe a person must behave (Angus & Reeve, 2006). Kitwood (1997) likewise believed we should not judge people living with dementia in relation to how we think a person should behave. Dementia may well challenge us as care partners because of the fundamental complexity of the condition, however, within the complicated domain of understanding behavioural and stress related responses, it may be considered more beneficial to appreciate the world through the eyes of the person living with dementia. This consequently may enable us to utilise our own strengths and abilities, to capture life from their perspective, without the judgmental labels and attitudes that we as cognitive aware individuals, tend to place upon them. To care for a person living with dementia in a respectful and dignified manner, to enable them to continue living life as they know it, requires a major conversion of ‘our’ inner fears and impressions associated with dementia.

Pessimistic attitudes continue to be biased. Subjective terminology such as assuming a person “suffers”, “is a burden”, “loses oneself”, is a “victim” or “afflicted”, are terms that are demeaning and derogatory, immediately providing a dehumanising attitude based on our cognitive personal opinions. As are the terms “challenging behaviour”, “behaviours of concern” and “BPSD”. These depictions intentionally describe behavioural expression in a manner clearly proclaiming that ‘only’ people living with dementia exhibit behaviour, people living with dementia are challenging ‘us’, and misleadingly, making an untrue declaration, that behaviour, psychiatric conditions and dementia are co-joined. Aligning dementia to mental health through a classification such as BPSD, is an error in judgement related to categorisation. It appears this has arisen because of uncertainty within a health framework founded purely on symptoms that only ‘seem’ to have at times, ‘some’ commonality. It is essential we advocate for dementia to be recategorized within a disability paradigm now that we are more knowledgeable. The past may have been mental health, but the future requires reform to adequately represent the experience of people living with dementia.
This will promote and support a more enabling approach and assist in change regarding societal stereotypical attitudes towards behaviour and dementia, and cease boxing people for the sake of expediency. It is clear these invalidating and caustic typecasts, do not reflect the actuality of behaviour nor dementia.

The power of destructive language. Further discernments regarding behavioural expression are habitually based on archaic, ageist, and negative stereotypes.

Many people within the community, inclusive of medical professionals, critic people who live with dementia, based on biased cognitive viewpoints, and one-sided recommendations that a person is ‘misbehaving’, ‘inappropriate’, ‘problematic’, ‘attention seeking’, or ‘disruptive’.

These imageries are essentially supplementary prejudicial assumptions, and are incorrect and inappropriate.

We should instead consider that behaviour is a response to feeling devalued, unmet need essential to that person’s life being ignored, and/or frustration due to inability to verbalise this effectively. Accordingly, it seems it is we who are not delivering, and are the catalysts to creating the stigma connected to behaviour and dementia. The fault directly lays with our behaviour in generating this attitude. Ignoring the actual triggers for behaviour, neglects the needs of people living with dementia and often results in negative consequences (Killick & Allan, 2001). Behavioural expression therefore could be avoided in many cases, and could be defined as:

‘behaviour of such intensity, regularity and extent that the physical welfare of a person and others may be placed or is likely to be placed in serious danger. It is necessary to perceive behavioural expression in relation to the person, the possibility that needs are not being met, as well as the subsequent frustration in loss of ability in being able to effectively communicate those needs. The concept of behavioural expression has come to be viewed less as a problem, and more as communication, or an expression of desire, or underlying distress, often triggered by the interaction between the person living with dementia, the care partner and the environment’. (Bisiani 2010).

Learning to embrace another language. As practitioners, we can make erroneous choices for people living with dementia by allowing our prejudices to take precedence, thereby misrepresenting their sense of personal and individual characteristics and needs (Killick & Allan, 2001). By adjusting ourselves, we may effectively meet the specific and distinct needs of those being cared for, thus value and honour their personhood, uphold the place they hold within the world, and maximize their quality of life. This attitude enables us to look deeper into ourselves and realise that we do not have the right to thrust our own personal subjective choices onto another, as this effectively negates the importance and relevance of that person’s civil liberties, stripping them of their personhood and the place they hold in the world.
Furthermore, Sifton (2004), suggests that, as caregivers, we cannot expect the person with dementia to try any harder. Indeed! Instead, it is recommended we appreciate and comprehend what a person is endeavouring to communicate, why they are trying to communicate a specific issue, and how we can resolve it with them, as a “partnership”, together. Goldsmith (1996) likewise advises that we need to be willing to cross the threshold into the world of people living with dementia, with all its confines and limitations, instead of expecting them to act within ours. Those that care for people living with dementia can, at times, struggle with this aspect of flexibility. The person who lives with dementia exists in a world in which it is a privilege for us to share, and they can provide us with the insight and inspiration to become a better version of ourselves, just simply by “understanding”. When endeavouring to fathom the world of a person living with dementia we should attempt to capture their conflicting perspectives and scrutinise the understanding of what we perceive. Hence, we may recognize, and attempt to upkeep each person’s reality as their own ‘personal truth’ (Patton, 2002). If we truly ‘listen’ to the behaviour of a person living with dementia, it is possible to understand their methods of communicating, thus open a new world between those attempting to connect. Respecting someone and upholding their dignity involves honouring their individuality and intricacy, their preferences and choices, their need for control over facets of their lives, and always respecting the necessity to have those selections and partialities considered and provided (Killick & Allan, 2001). Dehumanizing and disrespecting others by not providing choice, may create an environment in which that person may feel isolated within their reality, with no means to communicate their needs and preferences. Furthermore, it is possible this generates situations in which care needs may be assumed and the rights of the person living with dementia ignored. This can appear to people living with dementia, as a total disregard of their personal choices. Sifton (2004) states, having a sense of control is a basic adult need, and when this is dishonoured, it leads to distress and misery By labelling the individual and withdrawing them from normal interaction, we can precipitate the kinds of features and behaviour which we then consider evidence of the dementia. This in turn magnifies our own distorted responses, which triggers deeper distress within the individual (Killick & Allan, 2001). Hence, I again reinforce that these attitudes are frequently the impetus in creating inaccurate perceptions about dementia and those that live with dementia, therefore instilling the pessimistic mindset, that we then, at times prejudicially pass on to those we care for.

Reverse destructive and harmful myths. Consequently, it is vital for aged care professionals, the informal care partner, and our community to change our interpretation, turn the information we have been given on its axis, and respectfully, recognize the reality of people living with dementia.

If care partners explore and deliver interventions that prevent stress related responses, we may develop a more in depth understanding inside the convoluted realm of a person living with dementia.
Best practice looks to individuals for who they are, how they comprehend and relish all aspects of their life experience, and what is required to ensure they preserve their own individuality and selfworth (Killick and Allan 2001). By successfully capturing the origins behind why a person living with dementia has the need to exhibit a stress related response, means we may effectively remove those triggers from a person’s lifestyle, in turn addressing the issue of that specific behaviour. As hope supports individual survival, it makes sense that we all require some form of optimism to avoid hopelessness (Carson, 1989). “Care partners who understand a person’s cognitive boundaries, and provide care respecting the preferences of the person living with dementia, in ways that least exhausts their capabilities, are best able to minimise or avert behavioural expression and the negativity associated with it”. (Bisiani, 2011)

Honour, value and dignity. Some people living with dementia may find that dementia conveys experiences and understandings that those of us without the condition cannot even imagine, and furthermore, there are most probably no specific ways for them to express this verbally.

Dementia strips people down to the essence of their being and frees them to be in more direct touch with their emotions. They communicate with greater authenticity than our customary conventional reliance on controlled emotional expression (Killick and Allan 2001).

Instead of continuing our attempts to relate to a person living with dementia in the exact way we communicated with them prior to the commencement of their cognitive decline, should we not attempt to develop a fresh and more successful method of communicating.

We, alternatively, should commend them on their resourcefulness in producing a distinct method of communicating that compensates for their cognitive difficulty. It’s much more than what we do for them in return.

Hence, credit must be afforded to these inspiring and courageous people who live with dementia, as we make it eternally difficult for them by our rigid lack of understanding.

Subsequently, it is evident that to effectively maximise lifestyle, and understand the reality and the specific needs of every individual living with dementia, in relation to their perspective, we might significantly influence their lives positively and minimise stress related responses occurring, by ‘listening’ to their behavioural expression.

We need to recognise the essential unity of all human beings, despite whatever differences there may be in their physical, psycho social and cognitive capabilities.

As professionals we need to build upon this evidence to promote therapeutic interventions that demonstrate another valuable way forward in the provision of person-centred dementia care.

Then we can truly appreciate the person, and avoid intentionally disabling them.

It could be assumed that many people living with dementia may, if they could communicate it, have the belief, trust and faith in those caring for them, to continually persist in searching for fresh and innovative methods of creating preservation of ability, and enabling self-expression.

This would then provide increased possibilities to enable them to live a life free of the constraints that society place upon people that are different.

“Words don’t change lives, actions do. Failure is the opportunity to begin again more intelligently”. Henry Ford.

“Be the change you want to see in the world”. Ghandi

© Leah Bisiani – Uplifting Dementia – Dec.2017

Angus, J., & Reeve, P. (2006). Ageism: The threat to ageing-well in the 21st century. Journal of Applied Gerontology, 35, 137–152.
Carson, V. (1989). Spiritual Dimensions of Nursing Practice. WB Saunders: Philadelphia, Pennsylvania.
Goldsmith, M. (1996). Slow down and listen to their voice; Journal of Dementia Care, 4(4), 24-25.
Killick, J., & Allan, K. (2001). Communication and the care of people with dementia. Buckingham: Open University Press.
Kitwood, T. (1997). Dementia reconsidered – the person comes first. Buckingham: Open University Press.
Patton, M. Q. (2002). Qualitative research and evaluation methods, 3rd edn. Thousand Oaks CA: Sage Publications.
Sifton, C. B. (2004). Navigating the Alzheimer’s journey: A compass for caregiving. Maryland: Health Professional Press

Biography: Leah Bisiani is a highly skilled registered nurse/dementia consultant, having completed her Masters in Health Science/dementia stream, and Diploma in Business/Frontline Management, with more than 30 years’ experience in aged /dementia specific care.
After completing her Registered Nurse training at the Alfred Hospital in 1985, Leah undertook further studies and management/corporate employment within the aged care industry, establishing a knowledge and experience base placing her at the forefront of the industry, with her primary area of expertise being dementia specific care.
Leah has a passionate dedication towards Best Practice and is constantly researching and utilizing progressive and innovative approaches to obtain the highest possible quality of life for older people living with dementia. She distributes and publishes her evidence based research within the medical field, aged care sector and community, enabling others to accomplish maximized care for people living with dementia.
Self-development has been a priority, and has not only benefited Leah in her chosen pathway, but allowed her to expand on her proficiency, working in consulting, research, education/learning and development. Her goals continue to be focused on creating the ultimate benchmark for dementia specific care. Her vision has changed cultures and philosophies of care, providing a powerful voice that confront current practice, thus advocates and upholds the rights of all people living with dementia.
Leah has successfully demonstrated how creating environments in which persons with dementia continue to thrive, enables continuation of life based on recognition of self, and valuing individual preference and choices As a result of her ground-breaking and highly effective work, Leah’s increased profile has inevitably resulted in numerous, ongoing invitations over the years to lecture at leading national and global conferences on topics directly associated with her research, specifically behavioural expression and lifestyle.
Leah won both the 2010/11 Lend Lease ‘Australian’, and ‘Global’, Award for “Excellence in Innovation” for her personcentred models of care, designed for people living with dementia.
This award recognised Leah’s contribution to the aged care sector and specifically to the lives of those living with dementia. Her pioneering revelations have enabled people living with dementia to attain maximised and enriched lifestyles, and furthermore, successfully empowered and motivated care partners to embrace her dreams of change.
In 2012 Leah was published by Sage Publications in regard to her research, and continues to write key articles for the “International Dementia Journal”, “Australian Dementia Journal” and various key dementia journals globally. Leah was privileged to be invited to become an “International Care Team Member” of the ICA, (International Caregivers Association), a revered panel of dementia experts, based in Mapleton, USA, in 2014.
Having developed herself as a leader in the field, Leah has further added to her repertoire and become an advisory board member with the “Alive Inside Foundation”, USA. The Alive Inside Foundation is a non-profit organization dedicated to inspiring an Empathy Revolution—using education, intergenerational practices, music, and film. They empower youth and local communities to create meaningful, shared experiences that link generations, transform dementia care and expand aliveness globally.
Leah contributes her assistance to “Dementia Alliance International”, an Australian based registered non-profit organisation whose membership is exclusively for people with a medically confirmed diagnosis of any type of a dementia from all around the world. They seek to represent, support, and educate others living with dementia, and the wider dementia community. They strive to provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life. This provides Leah another niche area in which she can continue to make a difference to, and enrich the lives of people living with dementia.
In 2015 Leah published a submission to the Victorian Law Reform regarding her support of medicinal cannabis as a healing medicine. Leah is interested in advancing the development of medicinal cannabis clinical promotion and has presented at the, “Cann10 International Medicinal Cannabis Conference”, in Tel Aviv, Israel in September 2016, and “CannaTech Conference” in March 2017, where she was also Master of Ceremonies.
She has since become a popular and prominent speaker at foremost Australian and Global medicinal cannabis conferences, symposiums and summits, discussing the promising therapeutic benefits of medicinal cannabis for the treatment of chronic intractable pain in the older population.
Leah co-authored – “Understanding pain in aged care: the UNPAC study – exploring the nature and treatment of chronic pain in the Australian aged care setting” Published Feb.2018 in the Journal of Pharmacy Practice and examine and demonstrate supportive evidence within this arena.
As per the words of Ghandi, Leah believes: “Be the Change You Want to See in the World”.

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