Skip to main content Accessibility help
×
Home

Palliative and end of life care for people with dementia: lessons for clinical commissioners

  • Mareeni Raymond (a1), Alex Warner (a1), Nathan Davies (a1), Nirusha Nicholas (a2), Jill Manthorpe (a3) and Steve Iliffe (a1)...

Abstract

Aim

To synthesize information about management of end of life care in people with dementia using review papers.

Background

There are increasing numbers of people being diagnosed with dementia worldwide, and the needs of people with dementia and their carers at the end of life may be different from those with other chronic diseases. By highlighting the challenges of palliative care in persons with dementia and the ways they are best managed, practitioners in primary care may be able to improve services for this group of people at the end of life.

Methods

A search of electronic databases of English language papers published in peer-reviewed journals, 2000–2011 inclusive was undertaken using broad terms related to palliative care and dementia. 6167 papers were identified. Titles and abstracts were read. Papers were included if they were literature reviews of palliative or end of life care for people with dementia/Parkinson's disease/Lewy body dementia/cognitive impairment/Alzheimer's disease or any other cognitive impairment, in any setting (hospital, care home, community) and covering people of all ages. Papers were excluded if they covered palliative care focusing on other conditions, or were about an aspect of dementia care and treatment not related to palliative care.

Findings

Our critical synthesis generated five main themes from this review of the reviews: (1) carers’ (family caregivers’) experiences; (2) person-centred care; (3) practice (including advance care planning, pain and comfort, nutrition, medical complications and minimizing the distress of behavioural symptoms); (4) system factors, including ethical dilemmas, decision making, information, and training; and (5) research priorities. There appears to be good evidence on the care and management of patients with dementia at the end of life which can be used to influence policy development and emerging specificity about research priorities in palliative care practice for people with dementia.

  • View HTML
    • Send article to Kindle

      To send this article to your Kindle, first ensure no-reply@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about sending to your Kindle. Find out more about sending to your Kindle.

      Note you can select to send to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be sent to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

      Find out more about the Kindle Personal Document Service.

      Palliative and end of life care for people with dementia: lessons for clinical commissioners
      Available formats
      ×

      Send article to Dropbox

      To send this article to your Dropbox account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Dropbox.

      Palliative and end of life care for people with dementia: lessons for clinical commissioners
      Available formats
      ×

      Send article to Google Drive

      To send this article to your Google Drive account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Google Drive.

      Palliative and end of life care for people with dementia: lessons for clinical commissioners
      Available formats
      ×

Copyright

Corresponding author

Correspondence to: Mareeni Raymond, Department of Primary Care and Population Health, Royal Free Campus, University College London, Rowland Hill St., London NW3 2PF, UK. Email: mareeni_r@yahoo.com

References

Hide All
Abbey, J., Piller, N., De Bellis, A., Esterman, A., Parker, D., Giles, L.Lowcay, B. 2004: The Abbey pain scale: a 1-minute numerical indicator for people with end-stage dementia. International Journal of Palliative Nursing 10, 613.
Banerjee, S. 2012: Policy to enable people to live well with dementia: development of the National Dementia Strategy in England. In Innes, A., Kelly, F. and McCabe L., editors Key issues in evolving dementia care. London: Jessica Kingsley, 106121.
Birch, D.Draper, J. 2008: A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia. Journal of Clinical Nursing 17, 11441163.
Black, N. 2001: Evidence-based policy: proceed with care. British Medical Journal 323, 275279.
Blasi, Z.V., Hurley, A.C.Volicer, L. 2002: End of life care in dementia: a review of problems, prospects, and solutions in practice. Journal of the American Medical Directors Association 3, 5765.
Campbell, S.M., Braspenning, J., Hutchinson, A.Marshall, M.N. 2003: Research methods used in developing and applying quality indicators in primary care. British Medical Journal 326, 816819.
Caplan, G.A., Meller, A., Squires, B., Chan, S.Willett, W. 2006: Advance care planning and hospital in the nursing home. Age and Ageing 35, 581585.
Coventry, P.A., Grande, G.E., Richards, D.A.Todd, C.J. 2005: Prediction of appropriate timing of palliative care for older adults with non-malignant life-threatening disease: a systematic review. Age and Ageing 34, 218227.
Department of Health (DH). 2008: End of life care strategy: promoting high quality care for all adults at the end of life. London: Department of Health.
Department of Health (DH). 2009: Living well with dementia: a national dementia strategy. London: Department of Health.
Department of Health (DH). 2010: Quality outcomes for people with dementia: building on the work of the national dementia strategy. London: Department of Health.
Dixon-Woods, M., Cavers, D., Agarwal, S., Annandale, E., Arthur, A., Harvey, J., Hsu, R., Katbamna, S., Olsen, R., Smith, L.K., Riley, R.Sutton, A.J. 2006: Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups. BMC Medical Research Methodology 6, 35.
Douglas, D., James, I.Ballard, C. 2004: Non-pharmacological intervention in dementia. Advances in Psychiatric Treatment 10, 171177.
Gillick, M.R. 2000: Rethinking the role of tube feeding in patients with advanced dementia. The New England Journal of Medicine 342, 206210.
Goodman, C, Evans, C., Wilcock, J., Froggatt, K., Drennan, V., Sampson, E., Blanchard, M., Bissett, M.Iliffe, S. 2010: End of life care for community dwelling older people with dementia: an integrated review. International Journal of Geriatric Psychiatry 25, 329337.
Hall, S., Kolliakou, A., Petkova, H., Froggatt, K.Higginson, I.J. 2011: Interventions for improving palliative care for older people living in nursing care homes. Cochrane Database of Systematic Reviews Issue 3. Art. No.: CD007132. doi: 10.1002/14651858.CD007132.pub2.
Hussein, S.Manthorpe, J. 2012: The dementia social care workforce in England: secondary analysis of a national workforce dataset. Aging & Mental Health 16, 110118.
Manthorpe, J, Samsi, K.Rapaport, J. 2012. When the profession becomes personal: dementia care practitioners as family caregivers. International Psychogeriatrics, advance access 3 February .
Mathie, E., Goodman, C., Froggatt, K., Crang, C., Iliffe, S., Manthorpe, J.Barclay, S. 2012: An uncertain future: the unchanging views of care home residents about living and dying. Palliative Medicine 26, 734743.
McCarthy, M., Addington-Hall, J.Altmann, D. 1997: The experience of dying with dementia: a retrospective study. International Journal of Geriatric Psychiatry 12, 404409.
Mitchell, S.L., Kiely, D.K.Hamel, M.B. 2004: Dying with advanced dementia in the nursing home. Archives of Internal Medicine 164, 321326.
Meuser, T.M.Marwit, S.J. 2001: A comprehensive, stage-sensitive model of grief in dementia caregiving. Gerontologist 41, 658670.
Moher, D., Liberati, A., Tetzlaff, J.Altman, G.for the PRISMA group. 2009: Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. British Medical Journal 339, 332336.
Moriarty, J., Rutter, D., Ross, P.D.S. Holmes, P. 2012: End of life care for people with dementia living in care homes, SCIE Research Briefing 40. London: Social Care Institute for Excellence.
National Institute for Health and Clinical Excellence (NICE) and Social Care Institute for Excellence (SCIE). 2006: Dementia: supporting people with dementia and their carers in health and social care. London: NICE/SCIE.
NICE. 2012: Assumptions used in estimating a population benchmark. Retrieved 9 June 2012 from http://www.nice.org.uk/usingguidance/commissioningguides/eolcforpeoplewithdementia/EOLCAssumptionsUsedInEstimatingPopulationBenchmark.jsp
Ouldred, E.Bryant, C. 2008: Dementia care. Part 3: end of life care for people with advanced dementia. British Journal of Nursing 17, 308314.
Oxman, A.Guyatt, G. 1991: Validation of an index of the quality of review articles. Journal of Clinical Epidemiology 44, 12711278.
Pawson, R. 2002: Evidence-based policy: in search of a method Evaluation 8, 157–181.
Post, S. 1995: The moral challenge of Alzheimer's disease. Baltimore: Johns Hopkins University Press.
Regnard, C., Mathews, D., Gibson, L.Clarke, C. 2003: Difficulties in identifying distress and its causes in people with severe communication problems. International Journal of Palliative Nursing 9, 173176.
Robinson, L., Hughes, J., Daley, S., Keady, J., Ballard, C.Volicer, L. 2005: End of life care and dementia. Reviews in Clinical Gerontology 15, 135148.
Roger, K.S. 2006: A literature review of palliative care, end of life, and dementia. Palliative & Supportive Care 4, 295303.
Sampson, E. 2010: Palliative care for people with dementia. British Medical Bulletin doi: 910.1093/bmb/ldq024.
Sampson, E.L., Candy, B.Jones, L. 2009: Enteral tube feeding for older people with advanced dementia. Cochrane Database of Systematic Reviews CD007209.
Sampson, E.L., Ritchie, C.W., Lai, R., Raven, P.W.Blanchard, M.R. 2005: A systematic review of the scientific evidence for the efficacy of a palliative care approach in advanced dementia. International Psychogeriatrics 17, 3140.
Sepulveda, C., Marlin, A., Yoshida, T.Ullrich, A. 2002: Palliative care: the World Health Organization's global perspective. Journal of Pain and Symptom Management 24, 9196.
Shega, J.W.L. 2003: Palliative excellence in Alzheimer care efforts (PEACE): a program description. Journal of Palliative Medicine 6, 315320.
Shepperd, S., Lewin, S., Straus, S., Clarke, M., Eccles, M., Fitzpatrick, R., Wong, G.Sheikh, A. 2009: Can we systematically review studies that evaluate complex intervention? PLoS Medicine 6, 8e1000086.
Thomas, R.E., Wilson, D.Sheps, S. 2006: A literature review of randomized controlled trials of the organization of care at the end of life. Canadian Journal on Aging 25, 271293.
Tranfield, D., Denyer, D.Smart, P. 2003: Towards a methodology for developing evidence-informed management knowledge by means of systematic review. British Journal of Management 14, 207222.
Volandes, A.E., Paasche-Orlow, M., Gillick, M.R., Cook, E.F., Shaykevich, S., Abbo, E.D.Lehmann, L. 2009: Video decision support tool for advance care planning in dementia: randomised controlled trial. British Medical Journal 338, b2159.
World Health Organisation (WHO). 2012: Dementia: a public health priority. Geneva: World Health Organisation, http://whqlibdoc.who.int/publications/2012/9789241564458_eng.pdf

Keywords

Palliative and end of life care for people with dementia: lessons for clinical commissioners

  • Mareeni Raymond (a1), Alex Warner (a1), Nathan Davies (a1), Nirusha Nicholas (a2), Jill Manthorpe (a3) and Steve Iliffe (a1)...

Metrics

Altmetric attention score

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed