de men tia - SAGE Journals

2 downloads 0 Views 33KB Size Report
ELIZABETH L. SAMPSON University College London, UK. LOUISE ... over the age of 60 years will die whilst having a dementia (Brayne et al.,. 2006) and the ...
Editorial End of life care in dementia: Building bridges for effective multidisciplinary care ELIZABETH L. SAMPSON LOUISE ROBINSON

de men tia dementia http://dem.sagepub.com vol 8(3) 331–334

University College London, UK

Newcastle University, UK

The figures speak for themselves: by 2021 one million people in the UK will experience dementia (Knapp & Privett, 2007) and there will be similar increases in dementia prevalence throughout the world. One in three of us over the age of 60 years will die whilst having a dementia (Brayne et al., 2006) and the quality of end of life care received by people with dementia may be less than optimal (Sampson et al., 2006). The UK Government has attempted to address these issues through the End of Life Care Strategy (National Health Service – End of Life Care Programme, 2007) and the National Dementia Strategy (Department of Health, 2009). It is interesting, however, that there is little overlap or interaction between the two strategies and concerns have been expressed that people with dementia may ‘fall between two stools’ and not have their palliative care needs adequately addressed. Recently there has, among the dementia care and research community, been a great and encouraging upswing in interest in improving end of life care for this patient group. This special issue of Dementia is an encouraging acknowledgement of how health and social care professionals and researchers are working to provide equitable access and improved end of life care services for people with dementia and their families and caregivers. There is no doubt that we need to develop new and cost effective ways to improve the quality of care we provide. There have been a large number of ‘top down’ government initiatives and policies in this field, particularly in the UK, but it is vital that policy makers understand how a ‘bottom up’ process, with small local initiatives, developed by enthusiastic clinicians, tailored to individual patient and carer needs, can have a significant impact. Some examples of such initiatives, which demonstrate how effective multidisciplinary bridges can be built to provide better quality of end of life care for people with dementia, are presented in this special edition of the journal. Copyright © The Author(s), 2009. Reprints and permissions: http://www.sagepub.co.uk/journalspermissions.nav

DOI: 10.1177/1471301209106664

dementia 8(3) Treloar and colleagues have developed the ‘Hope from Home’ project and in this issue describe with both quantitative and qualitative data how carers can be empowered to look after their relatives with advanced dementia at home until they die. The quotations from carers provide particularly powerful examples of how simple interventions can overcome many of the systemic barriers that currently exist. Giotti describes how such projects can be initiated, funded and set up through multidisciplinary and inter-agency co-operation and how we can significantly improve patient care not through the development of new services, but through the linking and co-ordination of existing services – a key consideration when health and social care resources are so overstretched in many countries. This article also discusses how Kitwood’s definition of person-centered care could be extended to enhance end of life care for people with dementia. Evans describes a patient case history that will be familiar to many clinicians working in this field and how this acted as a catalyst to the development of a ‘Specialist Palliative Care in Dementia Group’. The alignment of general (family) practitioners with an individual nursing home enhanced patient care and may decrease the need for the acute unplanned transfer of patients to hospital. Using individual case studies she illustrates how simple measures can improve the management of pain and swallowing difficulties and how the culture of practice within nursing home can be influenced through the use of national protocols adapted for local use. Although healthcare systems and funding structures differ greatly between countries, the philosophy behind and the intention to provide good quality end of life care for people remains relatively consistent. Shega gives us an American perspective on these issues and focuses on the hospice system and how patients with dementia may be assisted in accessing end of life care. Prognostication is a key issue in advanced dementia and uncertainty regarding how long a person with advanced dementia will live has, in the past, been an important barrier that prevents them from accessing palliative care. He describes how the development of ‘hospice appropriateness’ criteria, although not guaranteed to predict prognosis, have begun to increase the numbers of people with dementia that are able to access American Hospices. Advance care planning is often cited as a cornerstone of the strategy to improve end of life care for people with dementia. It is a complex issue influenced by many conflicting factors; the lack of capacity characteristic of advanced dementia, the constraints of working across health and social care boundaries, the perception amongst relatives and professionals that dementia is not a ‘terminal illness’ and the constraints and limitations of differing legal systems in different countries. Through advance care planning, the ‘Let Me Decide’ programme successfully decreased hospital 332

s a m p s on & ro b i n s on : e d i to r i a l admissions and mortality for nursing home residents. Mellor and Caplan describe the practical implementation of this successful initiative in New South Wales, Australia and ways in which it may be developed further in the future. Much of the debate around end of life care and dementia focuses on quality of life and improving services. There is little discussion of the concept of ‘suffering’ and the impact this has on patients their families and staff. Aminoff has attempted to define suffering in end stage dementia and makes a case for the development of ‘relief of suffering units’ for these patients. This work is discussed from the perspective of the Israeli health care system and the Jewish faith; a further example of how good quality of care needs to be carefully tailored to the needs of the population. There are still many gaps in our knowledge and unanswered questions; how do we measure and evaluate ‘outcomes’ of end of life care in dementia and can we define a ‘good death’ for people who are unable to express their own needs and wishes? Research on advanced care planning for people with dementia is vital but still in the early stages of development. Prognostic uncertainty is a key barrier as are the challenges of evaluating the economic benefits of improved co-ordination between health and social care. What is notable about all of this work is how individual health and social care workers can make large improvements to the quality of care that people with dementia receive with relatively small increases in resources, through innovative practice and the coordinated use of existing resources; these are not ‘high-tech’ expensive solutions. As science moves forward and the promise of disease modifying agents for Alzheimer’s and other dementias becomes a reality, we must not lose sight of the fact that even if we can delay disease, patients and their carers will still ultimately reach the end of the ‘journey’ and there are many bridges to be built in which we can maximise the quality of care that they receive. References

Brayne, C., Gao, L., Dewey, M., et al. (2006). Dementia before death in ageing societies: The promise of prevention and the reality. PLoS Med, 3(10): e397. Department of Health (2009). Living well with dementia: A national strategy. 2009. Available from: http://www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/ Olderpeople/NationalDementiaStrategy/index.htm. Knapp, M., & Privette A. (2007). Dementia UK. London: Alzheimer’s Society. National Health Service – End of Life Care Programme (2007). Advance care planning: A guide for health and social care staff. Available at: www.endoflifecare.nhs.uk/eolc/acp/ (Accessed: 23 March 2007). Sampson, E. L, Gould, V., Lee, D., et al. (2006) Differences in care received by patients with and without dementia who died during acute hospital admission: A retrospective case note study. Age Ageing, 35(2): 187–189.

333

dementia 8(3) Biographical notes

is a General Practitioner and Senior Lecturer at Newcastle University. Her research interests span the whole spectrum of dementia care from the diagnosis of the illness to end of life care, with an emphasis on improving the quality of primary care. [[email protected]] E L I Z A B E T H L . S A M P S O N is a Senior Lecturer in Psychiatric and Supportive Care of the Elderly at the Marie Curie Palliative Care Research Unit, Department of Mental Health Sciences, University College London. She works clinically as an Old Age Psychiatrist with the Barnet, Enfield and Haringey Mental Health Trust. [[email protected]] L O U I S E RO B I N S O N

334