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ホーム > 世界の幹細胞（関連）論文紹介 > Dying well with dementia
Dying well with dementia
Lee Andrew Kissane（博士課程 1年）
医療政策・管理学／Department of Heath Policy and Management
Vanessa Lawrence／The British Journal of Psychiatry 199, 417-422, (2011)
Vanessa Lawrence, Kritika Samsi, Joanna Murray, Danielle Harari and Sube Banerjee
Dying well with dementia: qualitative examination of end-of-life care
The British Journal of Psychiatry 199, 417-422, (2011)
End-of-life care provision for patients with dementia presents a number of challenges to health care systems, to health providers and to clinicians. Dementia is prevalent across developed countries1, and in UK 30% of those who die suffer dementia.2 Patients dying from dementia have symptoms and health care needs comparable to cancer patients3 and these needs must be met. Patients with dementia also present further challenges in meeting these needs, such as the loss of capacity to make decisions regarding care that accompanies the cognitive impairment and difficulty in communicating that characterizes the severe stage of dementia.
In UK there have been a number of developments to address these challenges in the last 5 years including the National Institute for Health and Clinical Excellence Guideline for Dementia4, the Mental Capacity Act 20055, the publication of a National Dementia Strategy6 and National End of Life Strategy7, End of Life Care for People with Dementia Commissioning Guidance from NICE8, the uptake of the Gold Standards Framework9 in primary care and care homes, and the increasing use of the Liverpool Care Pathway10 for the last few days of life. However, there remains a need for greater clarity on an appropriate model for the delivery of end-of-life care particular to this large, important, but vulnerable patient group11.
In this qualitative study by Lawrence et al., the results of interviews with 23 care professionals and 27 bereaved family carers in UK were analyzed and the following 3 elements of good end-of-life care were reported:
I. Using dementia expertize to meet physical care needs
The importance of meeting patients` basic nursing needs such as washing and dressing, feeding and pain relief were identified. This standard was not found to be met consistently. A lack of expertize in dementia care among professional social services carers and nurses in acute settings could impede their ability to deliver basic nursing care, and a lack of confidence in pain management and palliation among staff could impede adequate symptom control for patients.
II. Going beyond task-focused care
Care should be `person-centred` aimed at addressing not just physical, but patients` social, emotional, and cultural needs too. A lack of reciprocity secondary to cognitive and communication problems coupled with total functional dependency which defines the severe stage of dementia can make it difficult for staff to empathize with patients in the final stage of their illness, and can lead to an increasing tendency to focus on the individual tasks that constitute care, such that holistic patient care can be reduced to a list of practical tasks that need completion. The collection and documentation of personal information about patients and the formation of relationships between staff and patients over time were seen as protective for this.
III. Prioritizing planning and communication
A variety of publications within the last 5 years in the UK have emphasized the importance of advanced care planning, the process of decision making when patients lack capacity, and the importance of providing information for the families of patients. A lack of awareness of and involvement in advanced care planning was evident with carers unsure of the benefits, and professionals recognizing it`s value but unsure as to whose role it was, and when the matter was best raised. The quality of communication with families around issues and decisions such as hospital transfer and life-prolonging treatment was not consistently high.
This study, though small, highlights 3 elements of end-of-life care that are important if patients with dementia are to have a `good death.` These elements are not highly technical and should not necessarily be difficult to achieve. Although deficits in the provision of these 3 elements were identified in some settings in the study, these findings are not necessarily generalizable to other hospitals, care homes and continuing care units either within or outside the UK. However, it seems likely these 3 elements will be important in meeting the end-of-life care needs of other patients with dementia as well. If service providers and care professionals do not take into account the unique circumstances and needs of people with dementia at the end-of-life then they are likely to fail a large number of their patients.
- Ferri C, Prince M, Brayne C, Brodaty H, Fratiglioni L, Ganguli M, Hall K, Hasegawa K, Hendrie H, Huang Y, Jorm A, Mathers C, Menezes P, Rimmer E, Scazufca M, for Alzheimer's Disease International. Global prevalence of dementia: a Delphi consensus study.Lancet 2005; 366: 2112-17
- Brayne C, Gao L, Dewey M, Matthews FE, Medical Research Council Cognitive Function and Ageing Study Investigators. Dementia before death in ageing societies - the promise of prevention and the reality. PLoS Med 2006; 3, e397.
- McCarthy M, Addington-Hall J, Altmann D. The experience of dying with dementia: a retrospective study. Int J Geriatr Psychiatry 1997; 12: 404-9.
- Dementia: Supporting people with dementia and their carers in health and social care.Clinical guidelines CG42 (November 2006) National Institute for Health and Clinical Excellence: www.nice.org.uk/CG42
- Mental Capacity Act 2005: www.legislation.gov.uk/ukpga/2005/9/contents
- National Dementia Strategy: www.dh.gov.uk/en/SocialCare/NationalDementiaStrategy/index.htm
- National End of Life Care Strategy: www.endoflifecareforadults.nhs.uk/strategy/strategy
- End of Life Care for People with Dementia: Commissioning Guide (6 July 2010). National End of Life Care Programme/National Institute for Health and Clinical Excellence: www.endoflifecareforadults.nhs.uk/publications/eolc-for-people-with- dementia-commissioning-guide
- Gold Standards Framework: www.goldstandardsframework.org.uk
- Duffy A, Payne S, Timmins F. The Liverpool Care pathway; Does it improve the Quality of dying? Br J Nurs 2011; 20(15): 942-6
- Sampson E, Burns A, Richards M. Improving end-of-life care for people with dementia. Br J Psych 2011; 199: 357-359.
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