Dementia Reconsidered: the Person Comes First

by Tom Kitwood

"For some years now, Tom Kitwood's work on dementia care has stood out as the most important, innovative and creative development in a field that has for too long been neglected. This book is a landmark in dementia care; it brings together, and elaborates on, Kitwood's theory of dementia and of person-centred care in an accessible fashion, that will make this an essential source for all working and researching in the field of dementia care."
Robert Woods, Professor of Clinical Psychology, University of Wales

"Over the last ten years or so Tom Kitwood has made a truly remarkable contribution to our understanding of dementia, and to raising expectations of what can be achieved with empathy and skill. This lucid account of his thinking and work will communicate his approach to a yet wider audience. It is to be warmly welcomed."
Mary Marshall, Director of the Dementia Services Development Centre, University of Stirling

* What is the real nature of the dementing process?
* What might we reasonably expect when dementia care is of very high quality?
* What is required of organizations and individuals involved in dementia care?

Tom Kitwood breaks new ground in this book. Many of the older ideas about dementia are subjected to critical scrutiny and reappraisal, drawing on research evidence, logical analysis and the author's own experience. The unifying theme is the personhood of men and women who have dementia - an issue that was grossly neglected for many years both in psychiatry and care practice.

Each chapter provides a definitive statement on a major topic related to dementia, for example: the nature of 'organic mental impairment', the experience of dementia, the agenda for care practice, and the transformation of the culture of care.

While recognizing the enormous difficulties of the present day, the book clearly demonstrates the possibility of a better life for people who have dementia, and comes to a cautiously optimistic conclusion. It will be of interest to all professionals involved in dementia care or provision, students on courses involving psychogeriatrics or social work with older people, and family carers of people with dementia.

Key features:
* One of the few attempts to present the whole picture.
* Very readable - many real-life illustrations.
* Offers a major alternative to the 'medical model' of dementia.
* Tom Kitwood's work on dementia is very well known

Genres: Health

160 pages, Paperback

First published January 1, 1997

Reviews

[Sophie · Rating 5 out of 5]

‘The new culture does not pathologize people who have dementia, viewing them as the bearers of a ghastly disease, [... it] brings into focus the uniqueness of each person, respectful of what they have accomplished and compassionate to what they have endured. […] To enter the new culture is like coming home; discovering how to draw on our feelings, intuition, spontaneity and living more comfortably with our faults; we gain confidence in our power to know, to share, to give, to receive, to love. The fact that dementia can be openly accepted, without shame.'

This is a must read for people interested in dementia and especially the idea of person-centred care. Kitwood begins by discussing the fact that people living with dementia are often portrayed as lost and dementia a ‘death that leaves the body behind’. He says that he at first 'simply took for granted that people ‘go senile’; and that when they do, virtually nothing can be done to help them beyond meeting their basic physical needs.' This book challenges that idea and discusses ways of seeing the person not just the disease and making an effort to try and understand how they are experiencing the world.

I particularly loved the sections covering ageism, depersonalisation of those who have some form of serious disability, how our attitude often stems from our anxieties (people fear becoming frail and highly dependent and we are terrified of mental instability), identifying deceptive practices used by carers and how psychosocial factors play a big part in how dementia progress. Also:
>>the list of malignant social psychology on page 46.
>>the list of psychological needs of people living with dementia on page 81.
>>the list of 12 types of positive interaction on page 90 & again on page 119.

[Aurélien Thomas · Rating 4 out of 5]

If you work in dementia care, then you simply cannot afford to don't know Tom Kitwood. True, many practitioners and researchers before him (some of whom he actually quotes here...) had outlined the importance of a person-centred approach and/ or rejected the determinism which, far too often, remained associated with a medical diagnosis in matter of incurable conditions. He, however, would ultimately be the one who will crystalise it all to articulate them at their best; so much so, in fact, that Tom Kitwood can easily be considered as being the one who rewrote the books about dementia. How so?

Dementia, he argued, is certainly not 'death that leaves the body behind' that is, a hopeless condition solely defined by its neurodegenerative features, and whereas people affected ought to be perceived as being doomed anyway. Such approach, inherited from our (otherwise correct) medical understanding only, had in fact been catastrophic when it came to our caring of concerned individuals as it had led to one-size-fit-all approach (what he called a "malignant social-psychology") where the persons themselves were grossly neglected. On the contrary! He argued that such disease and, in particular, its evolution and impact was highly dependent, too, on the environment of the person. The better the environment, and, especially, the more concerned about personhood and individualities, then the better the living conditions of affected people and, so, the better their prognosis. Put bluntly: if there certainly is no cure to dementia, it certainly doesn't mean that one's life just stops right there when being diagnosed with it.

Person-centred care (as opposed to the medical model, then) surely has come a long way since this book was first published back in 1997. Sadly, there still is a long way to go for dementia care to be truly reflective of the ideas expressed here. Personally for example, as a care support worker for elderlies experiencing various stages of dementia, I was also glad to see him insisting upon a fact that remains blatantly overlooked (when not completely ignored altogether): that of proper person-centre care being possible only if the frontline staff delivering it are valued in the first place. Sadly, though, in a society now ruled by short-sighted politicians with next to zero understanding of geriatrics (e.g. as I am typing this, politicians in the UK are, candidly yet in all shocking seriousness, debating whereas the retirement age should be raised to 70...!!) and where the care sector has been in complete shamble as a result, abandoned as it is to, on the one hand, a race for profits at the expense of the wellbeing of patients and, on the other hand, a complete lack of respect for frontline staff (still looked down upon as being merely "unskilled workers" by some in our elites e.g. just look at the average salaries offered for such a demanding job, no matter how humanly rewarding...) one can easily get why practices on the ground remain a far cry from such ethos.

All in all, though, here's a fascinating and radical book. By emphasising personhood over a sole medical model it has led to a complete flipping over of our understanding of dementia and, by extension, our dealing with people with dementia. The empathy and compassion being shown by the author and towards individuals who were otherwise stigmatised and neglected as a result is, in and of itself, truly inspiring. From there of course, its easy to believe that we now know better and came a long way, something which, to a certain extent, is true somehow. Dementia Reconsidered, however, is not only about diagnosed people. It is, also, about their carers (mainly professionals, but also families and relatives) and, as such, still has a lot to teach us about our approach when it comes to caring for some of the most vulnerable among us. The change in understanding regarding person-centred care has been a welcome result. But then again, what about our understanding of care work itself? Sadly, then, Tom Kitwood's work remains as relevant and urgent now as it was back in the 1990s.

[John Hayward · Rating 4 out of 5]

As Tom Kitwood says in the introduction to his seminal Dementia Reconsidered: The Person Comes First, “Contact with dementia or other forms of severe cognitive disability can – and indeed should – take us out of our customary patterns of over-busyness, hypercognitivism and extreme talkativity, into a way of being in which emotion and feeling are given a much larger place.” (p.5) The list of the 17 elements of ‘malignant social psychology’ on pp.46-7 and Blum’s four different kinds of deceptive practice used in ‘managing’ people who have dementia on p.48 are particularly challenging and expose how deeply rooted the “old culture” of care in society, even for those of us who are seeking to recognise “what a person is needing, and trying to meet that need.” Equally challenging is the observation that “The first requirement [in the caregiver’s part in creating person-enhancing interaction] is … that the caregiver is actually present, in the sense of being psychologically available. … ‘Being present’ entails letting go of that obsession with doing which often damages care work, and having a greater capacity simply for being.”

[Briony Harden · Rating 4 out of 5]

Read as part of my PhD. A great way to be introduced to Kitwood's work on personhood within dementia, his ideas on malignant social psychology and positive person work. Shame he passed away a year after this book was published.

I have the second edition to read which was published in 2019 and edited by Dawn Booker who was mentored by Tom Kitwood. It will be interesting to see the updated version and how we have moved in dementia care since 1997.

[Hayley · Rating 4 out of 5]

Interesting and definitely recommend for anyone interested in dementia

[David Roberts · Rating 4 out of 5]

Strong emphasis on personhood as the central tenet of life, as contracted with a disease based focus common with dementia patients.

[Muriel · Rating 5 out of 5]

see the dementia from... a human way :)