A person-centred approach has become the underpinning principal (philosophy) for aged dementia care across Australia and in many other countries. This approach seeks to assist those working with people living with dementia to address what Tom Kitwood described as Malignant Social Psychology where ‘personhood’ is undermined and the needs and rights of individuals are not taken into account.
The principals of a person-centred approach inform governance, development and delivery of care practices and these principals are the foundation of many developed models of care. At its core, a person-centred approach is really about how we connect with others, build and maintain relationships with those we support and work with, embrace uniqueness and the expression of this, and the provision of a safe supportive environment with high levels of dignity and respect for those within that environment. It involves empathy, listening, unconditional positive regard, congruency and authenticity.
A person-centred approach requires the person we are supporting to be at the centre of everything that involves them and their life, with a focus not solely on their diagnosis of dementia but considering the whole of who they are as a person and their lived experience.
It’s about recognising ourselves and others in equal measure, a collaboration of expertise between the health professional and the client. Person-centred care is not about what we ‘do’ but rather how we ‘be’ with others in the moments we share with them, in whatever context that is and however well we know them.
The person-centred philosophy recognises that dementia itself is only one aspect of the whole of who a person is and of their lived experience. It considers the personhood of the person, and this concept of ‘personhood’ is a central component to the understanding of person-centred care. It helps bring focus and awareness to the subjective, emotional and psychological experiences of the person living with dementia and those working with and caring for them, understanding that Dementia is only one part of their life experience. A person-centred approach helps to move the focus from being solely on the disease and biological health, to a more holistic view of the person and their lived experience.
Person-centred care characteristics: Respecting and valuing the individual as a full member for society. Understanding the perspective of the person and providing a supportive social psychology in order to help people live a life of relative wellbeing. (Brooker)
Why do we need a person-centred approach?
Leading up to the beginnings of an implementation of person-centred philosophy in Australia, it was evident that current care practices were not creating the best and most positive outcomes for those receiving them. People’s basic needs were being met but the psychological, emotional and human experience was commonly being undervalued and overlooked. This was especially apparent for those living in nursing home environments and was particularly noticeable in the wellbeing of people living with dementia.
The underpinning principals of a person-centred approach aim to address the gaps that were and often still are present in aged care practices. It is still common for the disease to be seen first before the rest of the person’s lived experience is considered or acknowledged. An example of this is when the persons experience and attempts to express these experiences are interpreted as a symptom of the disease, as ‘behaviour’ rather than an experience of it. This can lead to feelings of distress, loneliness and hopelessness and often results in the misuse of chemical and/or physical restraint.
People living with dementia can be greatly impacted by ageism and dementia ism – a double dose of stigma, assumption and discrimination. A person-centred approach tries to pierce through these stigmas and assumptions to see the person. Normal freedoms are often reduced for the person living with dementia because of ‘dementia ism’ and there are personal costs and impacts for the person. A person-centred approach highlights how we can change our perceptions of a person living with dementia and therefore our understanding and approach. These changes result in continued improvements and changes to current care practices and workplace cultures that are based in an old and redundant paradigm.
There has been change and positive improvements to care and care environments for people living with dementia and the learning and understanding from these changes continues to inform further improvements. However the sector as a whole is still some distance from achieving the aims of a person-centred approach across its support services and care environments. It is still uncommon to see a person-centred approach integrated to its full potential, however there are an increasing number of providers with a strong focus on its implementation. There is now a common understanding of what a person-centred approach means in theory and we see attempts for this to be grounded into work practices and care environments. Culture change takes a long time and the sector is still in the midst of implementing the principals of a person-centred approach into systems, processes and practices.
Background to person-centred approach
Person-centred principals were originally developed by Dr Carl Roger’s in a therapeutic / counselling setting, he understood that the relationship with the person he was working with was integral to the outcomes for that person. He developed what he understood to be necessary principals to positive outcomes to therapeutic relationships which were unconditional positive regard, empathy and congruence on part of the professional. Professor Tom Kitwood, senior lecturer of Psychology at Bradford University UK developed this idea in relation to dementia care settings he focussed on an empathetic approach, one which requires the practitioner to understand care from the perspective of the client. He also developed innovative training that helped students explore the feeling, emotional and intuitive parts of themselves, understanding that this self-awareness helps in the provision of person-centred approaches. He also understood the value of the relationship between the person with dementia and those around them. Tom Kitwood was a pioneer in the improvement of the quality of care for people living with dementia.
Resource book: Dementia Reconsidered, Tom Kitwood.
Being a person-centred person / practitioner: We need to tackle here the often sticky area of values and attitudes – the ‘map’ or ‘worldview’ that guides each and every one of us to experience and do things we do in the way in which we do them. There are few people working or supporting a person with dementia who deliberately treat them negatively or intentionally cause harm and therefore there is no judgment (unconditional positive regard) on whose values are the best or who has the ‘right’ attitude. Rather people behave in a way that is generally comfortable and safe to them and their own sense of self. Each person responds based on perception and experience.
However what does seem to be clear from some recent person-centred literature is the need particularly for individuals, who enter the world of someone living with dementia, to have insight into their own values, spirituality, culture, life history and purpose in life. If you can understand what makes you tick and why, you can reflect on how this informs your decisions, choices, behaviour and feelings. It can be easier then to put yourself in the shoes of another (empathy), to understand that the another person’s world is seen from their individual perspective, and appreciate then that people are continuously making sense of their experience in relation to themselves.
Being a person-centred organisation
Being a person-centred organisation takes more than simply understanding and being able to articulate the concepts and philosophy of a person-centred approach. It requires culture change on a larger scale and this can take a long time depending on what the reality of the current culture is. Strong leadership that creates working environment that enables staff to personally experience person-centredness helps a great deal in that then being translated into practice and integrated into culture. Person-centredness is about everyone, it’s not something that is ‘done to’ clients, it’s a way of being and needs to be at the core of organisational culture.
To ascertain your current reality requires you to look objectively at your organisations systems, processes, care practices, relationships with staff and clients and your organisational culture. It is only from gathering a clear picture of where you are now that you will be able to start carving a path that leads to the outcome of a culture of person-centredness in actuality, not simply theory.
Being person-centred as a service provider
Those who provide support services are encouraged to adopt person-centred principals in their work in an attempt to eradicate some of the de-humanising but common practices towards people with dementia. Practices such as treating people like children, excluding and labelling, disempowering and overpowering, invalidating their feelings and experiences, stigmatising and ignoring for example are some of the ways people can, mostly unconsciously, treat people with dementia.
Being person-centred as a provider of support and care is possible whatever the duration of those shared moments are. It requires us to take responsibility for the part we play in interactions with others, to have greater awareness of what that is and how we can contribute positively to these interactions.
There are many depths to the possibilities a person-centred approach offers organisations and health professionals committed to implementing it.