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JDC Asks...

Fri 07 Dec 2018

Over the last 18 months I have been leading on a project to update Tom Kitwood’s famous book, Dementia Reconsidered, with a series of commentaries from eminent people in the field, including some of the contributors here. I have reflected on this JDC Asks question a lot and my answer would be along the lines of “everything changes, and everything stays the same”. On the positive side, there have been substantial changes in societal awareness of dementia, with people being diagnosed at earlier stages and speaking about their experiences directly. We have research and practice evidence that support the benefits of person-centred care, which Kitwood was describing on a theoretical level over 20 years ago. However, we have also seen the almost wholesale marketization of care where budgets and outcomes rule how care is delivered. Malignant Social Psychology – as Kitwood called it - is still endemic in how services are organised and how they are delivered. The care of those with the most complex needs is, too often, provided by those who can do it for the lowest price with just a promise of good quality. We do not have a care system that can support people and their families from pre-diagnosis to end of life. We still have a long way to go to turn a system that is designed to treat “episodes of care” into a response that truly supports the personhood of those struggling to cope. Excellent care occurs in spite of the system, not because of it. This is an issue for all countries that needs a global response.

Professor Dawn Brooker is director of the University of Worcester Association for Dementia Studies

 

The lives of people with dementia and their experience have been opened up to society. Care is now seen as a more rounded construct, as a shared relationship between people living with dementia, relatives and care partners, and as something that exists within the spaces and places where everyday life is lived. Change has been powered by the language of inclusivity and opportunity, supported by government strategies and ambition and assimilated to the language of “living well” and citizenship. People living with dementia have become instrumental to the values and the vision of what constitutes a service and, more importantly, what it can become. The rise of social enterprises has resulted in changes to the ways in which support is provided and dementia is now everyone’s business. Society has also become open to seeing and hearing about people living with dementia: in the media, in the arts, in public education and in local neighbourhoods. Research funding has started to catch up with other major areas, such as cancer. There remains a lot to do, but dementia has always had the numbers to make political change and people living with dementia have always had the authentic voice. It was just a matter of timing and the stars aligning to make change happen. But what will always matter most is the individual and their social and relational context. Some truths will always be no matter what times we journey through.

Professor John Keady and Dr Ruth Elvish are part of the Dementia and Ageing Research Team, University of Manchester

 

The landscape for dementia has changed significantly since Dementia Reconsidered was published. While visionary at the time, Kitwood’s view of a “new culture” of dementia care reminds us of how far we have come but also how far we have to go. For example, we have made strides towards achieving his vision of recognising the importance of person-centred care within practice, clinical guidance and government policy. We have legislative recognition of dementia as a form of disability and there is greater acceptance that many behaviours people with dementia express are a form of communicating unmet needs. But we are still not achieving some of Kitwood’s ambitions: for example, while recognising the importance of person-centred care, this is still seen as an unachievable vision rather than practice reality for many. We are too often still failing to meet basic care needs. In other ways, however, we are surpassing Kitwood’s vision of what the future could hold. People with dementia and their families are viewed as experts on their condition and their direct voice is seen as essential to guiding research, policy and practice.  There are movements to create an inclusive society rather than just the provision of care services for people with dementia.  And the words we use to describe those with dementia is recognised as important. So dementia care has changed over the last 20 years; but perhaps not as much as we might have hoped.

Professor Claire Surr is based at the Centre for Dementia Research, Leeds Beckett University

 

Dementia care has changed, in some respects beyond recognition. While I wish this change was all positive, the truth is more mixed. The National Dementia Strategy and the PM’s Challenge had a positive impact; from this, Dementia Action Alliances, Dementia Friendly Communities and Dementia Friends have all helped improve care from when Kitwood was writing. Research into dementia care has grown enormously in funding, quantity and quality, and many projects are beginning to bring results. Professionals now have a far better understanding of the lived experience of dementia. Even 10 years ago, hearing the voice of the person with dementia was a rarity; now it is rare to see us excluded at events. So, is the picture a positive one? Yes and no is the truthful answer. For some the situation is better, but this is from quite a low starting point and with the cursed “postcode lottery” ever-present in dementia care. There are pockets of excellence, much good care, but still far too much care of an unacceptable standard. Making the inadequate good and the good excellent was always my background in education, and I continue to build on this. The Dementia Statements, which were revised with the voice of those affected by dementia in 2017, clearly set out the agenda and expectations of us all around dementia care. If realised, these statements will bring about care thatk Kitwood and his contemporaries could only have dreamed of.

Keith Oliver is Kent and Medway Partnership Trust (KMPT) dementia envoy and Alzheimer's Society ambassador

 

When we first met in 2001, just a few years after Kitwood’s book appeared, the work we felt compelled to do was a continuation of the theme “the person comes first”. And the work was to emphasise that someone living with dementia was indeed a person or self. In Steve’s book, The Experience of Alzheimer’s Disease, the focus was on understanding how selves could be positioned as defective and how one’s standing as a self could be undermined, but also supported and repaired. People diagnosed with dementia were too easily understood in dysfunctional terms and their appropriate actions were often “pathologised”: walking was “aimless wandering” and distress due to feeling lonely in unfamiliar places was “agitation”.  The book we jointly edited with Stephen Louw, Dementia: Mind, Meaning, and the Person, continued the theme: dementia does not equate to an inevitable “loss of self”.  We now understand that people diagnosed retain a great deal of their selfhood, respond meaningfully to social situations, and that their distress in a variety of settings, such as care homes, is quite appropriate.  So the argument has moved on. Personhood is presumed; citizenship must be claimed. People living with dementia are increasingly vocal about rights: rights upheld by the UN Convention on the Rights of Persons with Disabilities. Hence, “Nothing about us without us”!  The title of Ruth Bartlett and Deborah O’Connor’s book says it all: Broadening the Dementia Debate: Towards Social Citizenship. The fundamental interconnectedness of humanity must be recognised. Effecting this remains the challenge.

Steven R. Sabat is professor emeritus of psychology, Georgetown University, and Julian C. Hughes is RICE professor of old age psychiatry, University of Bristol

 

Dementia Reconsidered changed the psychological perspective on dementia, while the licensing of drug treatments also began to change medical views. The unspeakable, untreatable and neglected condition became of interest in prescribing medication, warranting efforts to diagnose and differentiate subtypes. All this drove the development of memory clinics and standards such as early diagnosis, good neuropsychological assessment and psychologically informed aftercare, including rehabilitative approaches to remaining well. Sadly, the quality of memory services is still variable. But earlier diagnosis and good psychological assessment have allowed many people to benefit from an explanation of their often disconcerting experiences, to adjust to changes, to plan ahead and to prioritise. I am proud to be part of the phenomenal leap in psychological approaches for supporting people with dementia throughout the stages of disability, though often regret how little can be made available at the coal face due to lack of resources. Slowly, public perception and engrained cultural stereotypes of dementia are changing through initiatives such as the network of DEEP groups, Alzheimer’s Disease International, European and 3Nations working groups, and Dementia Diaries. For clinicians sharing new diagnoses of dementia today, blog posts, books, videos, and writing by people with dementia are available to recommend. These provide models of coping, adjusting well, remaining active and engaged, and of continuing to enjoy a good quality of life for many more years than we would have thought possible 20 years ago.

Reinhard Guss is a clinical psychologist at Sussex Partnership Foundation Trust

 

 

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