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.
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 20th and 21st
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
Trevor Adams PhD runs passionate
dementia care which offers specialist training, consultancy and policy analysis
in dementia care.
