NCBINCBI Logo Skip to main content Skip to navigation Resources How To About NCBI Accesskeys Sign in to NCBI PMC US National Library of Medicine National Institutes of Health Search term Search database Clear input Limits Advanced Journal list Help Journal List QJM PMC3665910 Logo of qjmed QJM. 2013 June; 106(6): 491–494. Published online 2013 April 3. doi: 10.1093/qjmed/hct078 PMCID: PMC3665910 Palliative care for dementia—time to think again? J. Crowther,1 K.C.M. Wilson,2 S. Horton,3 and M. Lloyd-Williamscorresponding author1 Author information ► Copyright and License information ► Go to: Abstract It is estimated that there are 35.6 million people with dementia worldwide and this is projected to increase to over 115 million by the year 2050. Dementia is a progressive neurodegenerative disease that significantly reduces survival. End-of-life care received by this group is often poor and does not equate to that offered in other life limiting illnesses. This review highlights results from a large UK study of informal carers of people with dementia to explore what are determinants of care for people with dementia and their family carers. New perspectives as to models of care for end-of-life care for patients with dementia are discussed together with how these may be implemented and delivered within wider community settings and contexts, where many people with dementia may be cared for in the future. Go to: Introduction It is estimated that there are 35.6 million people worldwide with dementia with a projected increase to over 115 million by 2050.1 Within the UK, the prevalence of dementia is estimated at around 820 000.2 Dementia affects one in five of the population older than 85 years3 and an ageing population means more people are living and dying with dementia and by 2051 it is estimated that there will be approximately 1.7 million people with dementia in the UK. Research suggests that end-of-life care received by this group is often poor4,5 and does not equate to that offered in other life-limiting illnesses. Results of a recent UK qualitative study exploring end-of-life care experiences of informal carers of people with dementia indicate that little has changed in the past 10–20 years (J. Crowther, unpublished results). A geographically focused service evaluation is underway to address these problems at a local community level in an attempt to establish which services are required and whether a more specialized approach for end-of-life care for dementia can and should be developed. Dementia is a progressive neurodegenerative disease that significantly reduces survival6 and is predominantly a disease of older age. The symptoms, consequences and trajectory can be unpredictable affecting not only the person with dementia but also their families and those closest to them. Go to: What happens during end-of-life care? A national, qualitative study was undertaken in the UK (2008–11) exploring experiences of informal carers of people with dementia. This was in an attempt to determine underlying needs for end-of-life care for people with dementia and their family carers. Sample characteristics can be found in Table 1. Table 1 Table 1 Characteristics of participating bereaved carers The research consisted of in-depth interviews with bereaved family carers of people with dementia which were digitally recorded and transcribed. Field notes were also used to supplement interpretation and analysis. Death occurred in many different environments, e.g. district general hospitals, nursing and residential care homes and four occurred within a family home. Five themes emerged: carers as experts; kindness, humanity and compassion in care; the hard work of caring; living and dying with dementia in the face of uncertainty and communicating in a world of chaos and unpredictability. There were only four referrals to specialist palliative and end-of-life care services amongst the sample and these referrals were all made as the person with dementia also had a known and confirmed diagnosis of cancer. It is of interest that patients with a dual cancer and dementia diagnosis were more likely to be referred to palliative care services; however, a dual diagnosis of dementia and another life-limiting chronic illness did not appear to trigger specialist palliative care services referral. Results indicated communication and compassion were fundamental to the successful delivery of palliative and end-of-life care. This study identified issues separating dementia from other life-limiting illnesses. It also identified and highlighted the importance of a humane and compassionate approach. Importantly, it added to the dearth of literature regarding personal experiences of dying with dementia and issues contributing to difficulties with the provision of standard models of palliative and end-of-life care for this patient population. Issues which included the often prolonged ‘dying trajectory’ and issues regarding inappropriate admission of patients from care homes to hospital at the end of life. Half a million people die each year in the UK. A third of these are frail, elderly and suffering from dementia.7 This vulnerable group of patients tend to die in hospital where recognition of care of the dying is not a core role.8 Mitchell et al.9 argue that dementia patients at the end of life require access to high-quality specialized care. However, despite the growing prevalence and huge morbidity associated with dementia, these patients are still receiving suboptimal palliative care. Results from the UK study informed further studies focusing on a local level within Cheshire in North West England. The views and practices of all carers (informal family and formal paid carers) of people with dementia who may be in their last year of life and approaching death are being determined from within a range of care provision and caring environments, i.e. family care, 24-h care, district general hospitals, primary care, mental health services, domiciliary care, third sector and voluntary organizations. Information is being collected via qualitative interviews and survey-based questionnaires. Early results from the current study indicate that there is much work and investment required on a local level. This is across care environments and contexts in order to support the desired reduction of inappropriate hospital admissions and subsequent deaths in this environment for people with dementia nearing end of life. Although not yet analysed, we believe much of the findings will be applicable to other areas within the UK. Gott and Ingleton10 suggest older people are less likely than younger people to have access to specialist palliative care and more likely to die in settings where concerns have been raised about the quality of end-of-life care provided, notably hospitals and care homes. Many professionals and voluntary agencies are involved in the provision of dementia care during the last year of life and time surrounding death. Diverse interventions may be required and different groups may become involved at different times dependent on levels of need. The person with dementia may require the involvement of specialist dementia services, speech and language therapists, physiotherapists, social workers and primary care colleagues. Specialist palliative and end-of-life care services may also be engaged to support with symptom assessment and management. The coordination and timely referral to all these services is also a challenge. Frequently more intervention may be required by family carers who may experience high levels of stress and distress as the illness progresses. In the UK, social care via day centres, respite care and input from the third sector and voluntary organizations such as Age UK or the Alzheimer’s Society may be involved and also the Admiral Nursing service, a service to support carers funded by a charity Dementia UK, can be of huge support to patients and their families but this service is not available within every geographical area. One of the first models of dementia care was that of Scott and Pace11 in the South of England which demonstrated that while there was a need for a specialist dementia service, the service which was developed did not experience the very large number of referrals to the service or onto hospice care that had been predicted suggesting that generalists do have the ability and skills to appropriately refer people with dementia to more specialist end-of-life and palliative care services. Due to the predicted increase in incidence and prevalence of dementia, we need to consider the role of both generalists and specialists. Generalists are those who have not received accredited levels of palliative care training but who routinely provide care for people including those with dementia at end of life. Specialists are those who have received accredited training within palliative care and who focus on more complex cases and provision of support to generalist colleagues through partnership working.12 Go to: A community approach Palliative and end-of-life care should not be viewed solely in the context of generalists and specialists within health care. It needs to be considered in the wider community context and include those who provide a number of support services, i.e day care, respite care, befriending, hospice, domiciliary and 24-h care. Kellehear13 and Heath14 argue that the community has a responsibility to support and care for their own in relation to death and dying. They suggest that death needed bringing back into the arena of life. End-of-life care has been medicalized and taken over by the professionals. Heath14 argues that this needs to be relinquished back to local communities. This is synonymous with both Kellehear’s vision for compassionate cities and communities and the UK government focus on developing ‘dementia friendly communities’.15 Discussions regarding the most suitable environments in which to provide end-of-life care for people with dementia will continue. Reducing the number of inappropriate hospital admissions for people with dementia as they approach their death is a priority in the UK. Increasing the number of deaths within family homes where this is desired requires investment within local communities, support for families and an increase in services, both generalist and specialist, if this is to become a realistic option for end-of-life care. The demands of an ageing population suggests that need will increase—the social imperatives of a community approach and encouraging local communities to be involved with the care of people at the end of life, including those dying with dementia, will be vital to providing support for a greater number of deaths within the family home. People dying with cancer in the UK are offered a ‘preferred place of end-of-life care’—in terms of equality should a preferred place of care also be offered to people with dementia and their families? Go to: Conclusion Has end-of-life care for older people with comorbidities improved for our generation? Kellehear16 argues an overly romanticized historical picture bears little relation to realities of abandonment and mercy killing of older people practised by our hunter–gatherer ancestors.10 As in modern day, frail older people were viewed at times as a problem for society, although Kellehear16 argues that dying was historically viewed as an inevitable part of living. Kellehear concludes that recognizing the inevitability of dying and discussing within families and communities, as well as at a service and policy level, is fundamental to ensuring a humane response to the growing demand for end-of-life care for our increasing ageing populations whatever illness they may experience. Conflict of interest: None declared. Go to: References 1. Wimo A, Prince M. World Alzheimer Report 2010: The Global Impact of Dementia. London: UK: Alzheimer’s Disease International; 2010. 2. Alzheimer’s Society. London: UK: Alzheimer’s Society; 2012. Dementia 2012: A National Challenge. 3. Knapp M, Prince M. Dementia UK. A report to the Alzheimer’s Society on the prevalence and economic cost of dementia in the UK produced by King’s College London and London School of Economics. London: UK: Alzheimer’s Society; 2007. tinyurl/bmpcu8q (29 January 2013, date last accessed) 4. Lloyd-Williams M. An audit of palliative care in dementia. Eur J Cancer Care. 1996;5:53–5. [PubMed] 5. Sampson E, Gould V, Lee E. Differences in care received by patients with and without dementia who died during acute hospital admission: a retrospective case note study. Age Ageing. 2006;35:187–9. [PubMed] 6. Neale R, Brayne C, Johnson AL. Cognition and survival: an exploration in a large multicentre study of the population aged 65 years and over. Int J Epidemiol. 2001;30:1383–8. [PubMed] 7. Bracegirdle L. A tormented death: end-of-life care for people with dementia. Br J Nurs. 2012;21:723–7. [PubMed] 8. Torjesen I. End-of-life strategy to ensure quality care for dying patients. Nurs Times. 2008;104:21–2. [PubMed] 9. Mitchell SL, Kiely D, Hamel MB. Dying with advanced dementia in the nursing home. Arch Intern Med. 2004;164:321–6. [PubMed] 10. Gott M, Ingleton C. Do Older People Matter? ww.ehospice/ArticlesList/Dooldpeoplematter011713044819/tabid/4426/ArticleId/2694/language/en-GB/Do-old-people-matter.aspx#.UPz6QvLzmuI (20 January 2013, date last accessed) 11. Scott S, Pace V. The first 50 patients: a brief report on the initial findings from the Palliative Care in Dementia Project. Dementia. 2009;8:435. 12. Gott M, Seymour J, Ingleton C, Gardiner C, Bellamy G. That’s part of everybody’s job’: the perspectives of health care staff in England and New Zealand on the meaning and remit of palliative care. Palliat Med. 2012;26:232–41. [PubMed] 13. Kellehear A. Compassionate Cities. Public Health and End-of-Life Care. Oxfordshire: Routledge; 2005. 14. Heath I. Momento mori. InnovAiT. 2009;2:503–4. 15. Department of Health. Living Well with Dementia: A National Dementia Strategy. Putting People First. London: UK: DoH Publications; 2009. 16. Kellehear A. Dementia and dying: the need for a systematic policy approach. Crit Soc Policy. 2009;29:146–57. Articles from QJM: An International Journal of Medicine are provided here courtesy of Oxford University Press Formats: Article | PubReader | ePub (beta) | PDF (61K) Related citations in PubMed Preferences for end-of-life care: a nominal group study of people with dementia and their family carers.[Palliat Med. 2013] Dening KHJones L, Sampson EL, . Palliat Med. 2013 May; 27(5):409-17. Epub 2012 Nov 5. Developing and testing a strategy to enhance a palliative approach and care continuity for people who have dementia: study overview and protocol.[BMC Palliat Care. 2012] Toye CRobinson AL, Jiwa M, Andrews S, McInerney F, Horner B, Holloway K, Stratton B, . BMC Palliat Care. 2012 Apr 2; 11:4. Epub 2012 Apr 2. People with dementia and the hospital environment: the view of patients and family carers.[Int J Older People Nurs. 2013] Digby RBloomer MJ, . Int J Older People Nurs. 2013 Jan 16; . Epub 2013 Jan 16. Measurement of health-related quality of life for people with dementia: development of a new instrument (DEMQOL) and an evaluation of current methodology.[Health Technol Assess. 2005] Smith SCLamping DL, Banerjee S, Harwood R, Foley B, Smith P, Cook JC, Murray J, Prince M, Levin E, , et al. Health Technol Assess. 2005 Mar; 9(10):1-93, iii-iv. A systematic review of the effectiveness and cost-effectiveness of different models of community-based respite care for frail older people and their carers.[Health Technol Assess. 2007] Mason AWeatherly H, Spilsbury K, Arksey H, Golder S, Adamson J, Drummond M, Glendinning C, . Health Technol Assess. 2007 Apr; 11(15):1-157, iii. See reviews...See all... 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