Guest editors of the special issue, Julian C. Hughes, The RICE Centre, Bristol University, UK and Jenny T. van der Steen, Leiden University Medical Center and Radboud University Medical Center, Nijmegen, The Netherlands, invite you to contribute . . .
Much of life is to do with relationships and things go better when relationships are good. Palliative care is about relationships too. Looking after people who live with dementia and their families involves specific challenges for which palliative care has a lot to offer. We want to talk about this in terms of relationships: they are important in palliative care, but also for research.
The field has made great strides since, in 1986, JAMA published a paper on the development and evaluation of the first dementia-specific hospice programme aimed at comfort in people with advanced dementia in the United States. The developer of the programme, Professor Ladislav Volicer, has been a great inspiration and friend to us both. For instance, he joined us and others to develop the European Association for Palliative Care (EAPC) dementia white paper, which, for the first time, defined optimal palliative care in dementia by its domains and recommendations.
In 1995, as an engineer with no clinical background, Jenny started research on palliative or curative treatment of pneumonia in nursing home residents with dementia. In essence, it was about whether or not to treat with antibiotics. Yet in 2004, at Jenny’s first EAPC congress, in Stresa, there was hardly anything about dementia. Julian’s first real engagement with palliative care came in about 1996 when, as a senior registrar in old age psychiatry, he spent a morning each week in the hospice in Oxford. In 2005, he was invited to write an editorial about palliative care in dementia for the BMJ. Of course, he turned to Ladislav Volicer for help!
A lot has happened since: palliative care has ’adopted‘ dementia as an incurable disease in which it can help. Observing symptoms, good symptom management, advance care planning: these are all being addressed from a more multidisciplinary and more holistic perspective. Those in the dementia field have also recognized the importance of palliative care.
Poor practice persists
Mr Cowley and his family had been known by the consultant psychiatrist for many years. As his dementia worsened there were attempts to talk about the future, but Mr Cowley and the family preferred to focus on the present: he was living well. Eventually, however, he became frailer and, following a fall, he was hospitalised. There, things went very wrong. When the psychiatrist went to see him on a general medical ward he was lying in bed, in pain, incontinent. Because of good relationships, the psychiatrist was able to arrange for the local palliative care team to intervene and Mr Cowley was moved to the hospice where he died peacefully a little while later. The story has a good ending, but shows that there is much more work to be done.
Over the past 10 to 15 years, research in the field of palliative care in dementia has burgeoned. Much of this work will eventually be relevant to many of us, as up to one in three people has dementia at the end of life. Yet, we need better evidence on what to do at different stages of the disease and how best to integrate palliative care principles into current practice on a large scale in a manner that is feasible and affordable.
To this end, Palliative Medicine recently launched a call for papers for a special issue on dementia. We are delighted to act as guest editors and look forward to reading about the rigorous research – whether based on empirical data or offering theoretical and conceptual perspectives – which we know is going on throughout the world.
The special issue will bring together top researchers and thinkers in the field. In a sense, it is also about relationships: it’s about our solidarity as researchers committed to improving palliative care in the field of dementia with those (and their families) who live with dementia every day.
If you are interested in submitting a paper for this special issue of Palliative Medicine, please view more information here. Or, visit our website and click on ‘Call for Papers’. (If you have any problems, please email Debbie Ashby, Editorial Manager). Deadline for submissions: 31 March 2017.