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27 Oct 2020

What really matters to people living in Residential Care?

Geoffrey Cox, MD Southern Healthcare & CEO The Eden Alternative

That’s a really complex question. It will of course depend on the viewpoint of the person who is living in Residential care (or their advocate) and / or the perspective of the person who is asking or answering this question.

Lets look as the various ‘stakeholder’ groups, starting with the Resident, then the Residents loved ones / families / advocates, the people who work in social care, the academics, the public, the Healthcare professionals,  those who fund services, or regulate them and those who govern the country.

Each of those ‘groups’ will have strong views, which will likely differ, and in terms of importance probably in the same order. Yet, those who have strongest influence are likely to be in the inverse order.

Government perspectives will vary, but typically language will include words like ‘independence, choice and control’. However these ‘goals’ become increasingly difficult to reconcile, the more dependent, frail and poorly a person becomes. Does that imply they cannot then be fulfilled? Surely not.

Regulation has determined for itself ‘what matters’, but in fact little has changed to the rules in over 20 years, even though many still find them hard to satisfy with an increasingly dependent, complex and ageing resident group. CQC reports and ratings are seen as critical, but it is still not clear if their criteria matches up with our own individual expectations.

Then there are distant observers above, before we get to the workforce upon whom this all depends, then the anxious families or the Resident themselves, whose actual voice is not always heard.

Our view could be coloured by our attitude to older people in general, or our own ageing parents in particular. We would probably not accept for ourselves what we would accept for our older parents.     

There are so many approaches to the above question. So, let’s look briefly at the works of some change agents over the years. Many are not well known. However, these are some of the people who have struck me along my own journey in social care over some 20 years.

Carl Rogers. Everyone in social care can probably tell you what ‘person centred care’ means.  However, like myself until some years ago, few know of Carl Rogers, who was the American Psychologist who coined the concept ‘person centredness’ from which ‘person centred care’ is derived.  He wrote extensively about practising essential skills such as effective listening, acceptance and appreciation to great effect. He also coined another term ‘unconditional positive regard’, and practised this in ground breaking counselling and therapeutic disciplines and became a nobel prize nominee for his contribution to conflict resolution in South Africa and Ireland.

His works have been highly prized and successfully applied for over 70 years and seen  by many as relevant today as in the 50’s.     

Abraham Maslow was another Psychologist, who developed a pyramid model with 5 layers describing how people have to have basic physical / physiological needs met first, then certain psychological needs in order to ultimately reach a state of fulfilment called ‘self actualisation’.

Tom Kitwood was another Psychologist who in the ‘70’s detailed the negative experience of a person with dementia as not just relating to the condition itself, but being a function also of physical ageing difficulties, and the persons lived experience being affected significantly by the behaviours and attitudes of ‘healthy others’.

He described 21 instances of particular behaviours, such as that of treating older adults as if children etc.  If one looks carefully, such negative characteristics can still persist today.

Bill Thomas, an American geriatrician, set about addressing the challenges of loneliness, helplessness and boredom in the ‘90’s which he saw whilst practising as a GP in a New York elderly care Nursing Home. He and others developed a ground breaking philosophy of care still practised in some 20 countries over the last 30 years (still growing today), with a key focus on developing ‘wellbeing’, defined by 7 outcomes, and practised through the application of 10 principles i.e. designed to recognise these challenges, to help strive for a better alternative reality, the development of 3 key strategies, to empower people, de-medicalise the environments,  build cultural sustainability and enhance leadership.   

His model for wellbeing comprises Identity, Growth, Security, Connectedness, Autonomy, Meaning, and Joy which is very specific, powerful and challenges the status quo from an ‘anti ageist’ stance.  It also makes room for an individual, subjective approach, appreciating we are all different,  that one view is not right and another wrong, and suggests in fact it is critically important to respect each other’s differences.  

Tony Robbins is a global transformation coach. He draws on a similar model of 6 Human needs. He may have been mindful of Rogers works, Maslow’s or perhaps neither.  His model has many parallels with them and with Thomas, who himself might have been inspired by Rogers, Maslow and / or Robbins. Robbins’ model draws on Certainty, Variety, Significance, Love / connection, Growth and Contribution as hugely important ‘needs’, drivers of behaviour, and determinants of wellbeing.

This model recognises that we are unique as to the order and priority we each give to these needs, invites us to recognise these differences, both in ourselves and others, and seeks to appreciate and respect those differences. Fulfilment is the goal of understanding and implementing this model. His works in the relationship field aspire to a lofty standard of ‘unconditional love and affection’ that many people struggle to attain.  

Finally I mention David Sheard. He took the works of Tom Kitwood above, and developed strategies to avoid Kitwood’s 21 instances of negative behaviours called ‘malignant social psychology’ and apply Kitwoods’ 17 instances of positive personal interaction. Sheard’s flagship ‘Butterfly’ programme is also based on the notion that a person with dementia becomes more ‘feeling’ based than ‘thinking’ based and draws on the strapline ‘Feelings matter most’.

A good understanding of the combined works of Rogers, Maslow, Kitwood, Thomas, Robbins and Sheard helps us to provide a detailed pathway to developing and sustaining wellbeing.  But let’s still not forget we are all unique individuals and even with all the tools in the box, the models and the disciplines of exemplary behaviour, we still need to be informed by the unique and subjectively defined aims, ambitions and perhaps even quirks of every single one of us.
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