Personalised Support to People with Dementia

For many years, the main approach in hospitals and care homes to people with dementia was institutional and often treated them as if they were no longer human. This was captured by Tony Whitehead in the late 1960s who described what many long stay wards looked like:  

 “Patients were herded together in old, bleak, neglected buildings with large dark wards, closely placed rows of beds, little furniture and frightening inactivity. Multiple regulations curtail the patients’ freedoms and reduce their contact with the outside world.  They

may be confined to the ward and allowed out only in large supervised groups. Privacy, usually valued by the elderly, is often non-existent. Bathing is supervised and may take place in a communal bathroom.  Visiting is restricted to a few hours a week and children are often

prohibited. To visit some wards for the elderly is to visit the annex to the mortuary. Rows of old people lie in bed with legs bent and muscles wasted by lack of use, eyes dull and vacant, waiting to die.”

The dominant approach within dementia care is presently person centred care.  This approach was developed by Tom Kitwood and more recently by people like Dawn Brooker.   The central idea here is that within service provision, people with dementia should come first.  In addition there is also the idea that a person’s dementia does not just arise from biomedical causes such as their brain damage and their physical health but also from social and psychological factors such as their personal biography and their day to day interaction with other people – what Kitwood calls ‘social psychology’.  All this Tom Kitwood puts succinctly as an equation

Dementia = brain pathology +physical health+ biography + social psychology 

I very much value the work of Tom Kitwood and I am pleased that it has had an immense impact on people with dementia, not least on the National Strategy for Dementia.  But Kitwood’s work is not without its problems and a number of writers over the years, including myself, have fully described them.  One of these problems is whether Kitwood’s person centred care really offers people the opportunity to makes choices and have control.  This is an important issue as recent developments in social policy have highlighted the need to develop personalised services for people with dementia and the question is whether  personalisation really achieves this.

Personalisation is part of government approaches towards health and social care that stars ‘ with the person as an individual with strengths, preferences and aspirations and putting them at the centre of the process of identifying their needs and making choices about how and when they are supported to live their lives’(SCIE 2008).

The temptation is to think that person centred care all about personalisation and that dementia care has been doing personalised dementia support for a long time.  But the recent work of Bartlett and O’Connor suggests that this is not the case and that person centred care is not able to deliver personalisation.  They argue that Kitwood sees communication as a one-way process from the paid-for carer to the person with dementia.  This Bartlett and O’Connor say makes any sort of well being the person with dementia may have, dependent upon the paid-for carer; and this makes them passive and dependent.   Ironically in an approach that seeks to put the person with dementia first, person centred care apparently leads to people with dementia being seen and experiencing little self-direction and ability to make their own choices about the sort of life they want to lead.  This goes in the face of personalisation and shows that person centred care in itself, is inadequate to provide personalised support to people with dementia.    

Over the last year I have been working with Helen Sanderson Associates and others in developing new ways in which we can build upon person centred care and so that fully personalised care can be delivered to people with dementia in care homes.  This has really been a creative and exciting time and through this work we have developed a self-assessment tool for care homes seeking to introduce personalisation. 

Progress for providers checking your progress in delivering personalised support for people living with dementia

We are particularly pleased that our work has been commended by Alistair Burns, Dementia Tsar, Department of Health and Jeremy Hughes, CEO, Alzheimer’s Society and we look forward to it being used by care homes through the United Kingdom.  A key aspect of this work is that we used ideas and strategies drawn from an approach called ‘person centred practice’ which though having a similar name to ‘person centred care’ is different in that it develops way of helping people make their voices heard, choices made, and have optimal control.  I see person centred practice as something that can be added to person centred care to provide full personalisation, which person centred care alone cannot do.  Thus I am saying that

Personalised support for people with dementia =

person centred care + person centred practice 

To support care homes seeking to develop personalised support to people we dementia, Liz Leach, from Imagineer and myself are running a two day workshop on personalisation and people with dementia in Halifax on 20^th and 21^st November. The workshop will be exciting and innovative and will introduce participants to different ways in which personalised support may be offered to people with dementia.  

For more details contact

 Liz Leach, Imagineer at liz@imagineer.org.uk

Trevor Adams PhD runs passionate dementia care which offers specialist training, consultancy and policy analysis in dementia care.