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An evaluation of palliative care contents in national dementia strategies in reference to the European Association for Palliative Care white paper

Published online by Cambridge University Press:  13 February 2015

Miharu Nakanishi ,
Taeko Nakashima ,
Yumi Shindo ,
Yuki Miyamoto ,
Dianne Gove ,
Lukas Radbruch  and
Jenny T. van der Steen
Miharu Nakanishi*
Affiliation:
Mental Health and Nursing Research Team, Tokyo Metropolitan Institute of Medical Science, Setagaya-ku, Tokyo, 156-8506, Japan
Taeko Nakashima
Affiliation:
Department of Economics, Rutgers University, the State University of New Jersey, Camden, NJ 08102, USA
Yumi Shindo
Affiliation:
Division of Research, Tokyo Dementia Care Research and Training Center, Suginami-ku, Tokyo, 168-0071, Japan
Yuki Miyamoto
Affiliation:
Department of Psychiatric Nursing, Graduate School of Medicine, the University of Tokyo, Bunkyo-ku, Tokyo, 113-0033, Japan
Dianne Gove
Affiliation:
Alzheimer Europe, Luxembourg, L-1417, Luxembourg
Lukas Radbruch
Affiliation:
Department of Palliative Medicine, University Hospital Bonn, Bonn, 53127, Germany Palliative Care Centre, Malteser Hospital Bonn/Rhein-Sieg, Bonn, 53123, Germany
Jenny T. van der Steen
Affiliation:
Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, 1081BT, Amsterdam, the Netherlands
*
Correspondence should be addressed to: Miharu Nakanishi, PhD, RN, PSW, Mental Health and Nursing Research Team, Tokyo Metropolitan Institute of Medical Science, 2-1-6 Kamikitazawa, Setagaya-ku, Tokyo, 156-8506, Japan. Phone: +81-3-6834-2292. Email: [email protected].
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Abstract

Background:

Dementia involves a progressive decline in many functional areas. Policy and practice guidelines should cover the entire course of the disease from early detection to the end-of-life. The present study aimed to evaluate the contents of national dementia strategies with a focus on palliative care content.

Methods:

We employed qualitative content analyses. Sixteen national dementia strategies from 14 countries were reviewed. Using open coding, the contents were compared to the domains and recommendations of the palliative care in dementia white paper of the European Association for Palliative Care (EAPC).

Results:

Although palliative care was not explicitly referred to in eight of the 14 countries and only to a limited extent in three countries, a number of domains from the EAPC white paper were well represented, including “person-centered care, communication, and shared decision making”; “continuity of care”; and “family care and involvement.” Three countries that referred to palliative care did so explicitly, with two domains being well represented: “education of the health care team”; and “societal and ethical issues.” The strategies all lacked reference to the domain of “prognostication and timely recognition of dying” and to spiritual caregiving.

Conclusions:

National dementia strategies cover part of the recent definition of palliative care in dementia, although they do not frequently label these references as “palliative care.” In view of the growing numbers of people dying with dementia, preparation for the last phase of life should be added to national strategies.

Keywords

dementiaend-of-lifenational health policypalliative care
Type
Research Article
Information
International Psychogeriatrics , Volume 27 , Issue 9 , September 2015 , pp. 1551 - 1561
Copyright
Copyright © International Psychogeriatric Association 2015 

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References

Alzheimer Europe (2008). Alzheimer Europe Report: End-of-life care for people with dementia. Available at: http://www.alzheimer-europe.org/content/download/57029/363217/file/AE_Report_02-08.pdf; last accessed 6 January 2015.Google Scholar
Alzheimer's Disease International (2012). National Alzheimer and Dementia Plans Planned Policies and Activities. Early Detection, Access to Diagnosis, and Stigma Reduction. Available at: http://www.alz.co.uk/sites/default/files/national-alzheimer-and-dementia-plans.pdf; last accessed 19 March 2014.Google Scholar
Alzheimer's Disease International (2014). Government Alzheimer plans. Available at: http://www.alz.co.uk/alzheimer-plans; last accessed 19 March 2014.Google Scholar
Arcand, M. et al. (2013). Educating families about end-of-life care in advanced dementia: acceptability of a Canadian family booklet to nurses from Canada, France, and Japan. International Journal of Palliative Nursing, 19, 67–74.Google Scholar
Australian Health Ministers’ Conference (2006). National Framework for Action on Dementia 2006–2010. North Sydney, NSW: NSW Department of Health.Google Scholar
Commonwealth of Australia (2000). National Palliative Care Stratrgy - A National Framework for Palliative Care Service Development. Available at: http://www.health.gov.au/internet/publications/publishing.nsf/Content/CA25774C001857CACA256F190013649F/$File/Strategy.pdf; last accessed 1 April 2014.Google Scholar
Dementia stakeholder groups (2010a). Priority Area 1 Actions. Available at: http://wales.gov.uk/docs/dhss/publications/00510priority1en.doc; last accessed 24 April 2014.Google Scholar
Dementia stakeholder groups (2010b). Priority Area 2 Actions. Available at: http://wales.gov.uk/docs/dhss/publications/100510priority2en.doc; last accessed 24 April 2014.Google Scholar
Dementia stakeholder groups (2010c). Priority Area 3 Ations. Available at: http://wales.gov.uk/docs/dhss/publications/100510priority3en.doc; last accessed 24 April 2014.Google Scholar
Dementia stakeholder groups (2010d). Priority Area 4 Actions. Available at: http://wales.gov.uk/docs/dhss/publications/100511priorityarea4(2)en.doc; last accessed 24 April 2014.Google Scholar
Department of Health (2008). End of Life Care Strategy: Promoting High Quality care for Adults at the End of their Life. Available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/136431/End_of_life_strategy.pdf; last accessed 24 April 2014.Google Scholar
Department of Health (2009). Living Well with Dementia: A National Dementia Strategy. Available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/168220/dh_094051.pdf; last accessed 19 March 2014.Google Scholar
Department of Health (2013). Consultation Paper. National Framework for Action on Dementia 2013–2017. Available at: http://www.health.gov.au/internet/main/publishing.nsf/content/CDA8D72FD1DC88F4CA257BF0001A8D23/$File/NFAD2013-2017.pdf; last accessed 3 April 2014.Google Scholar
Department of Health, Social Services and Public Safety (2010). Living Matters, Dying Matters - A Palliative and End of Life Care Strategy for Adults in Northern Ireland. Available at: http://www.dhsspsni.gov.uk/8555_palliative_final.pdf; last accessed 1 April 2014.Google Scholar
Department of Health, Social Services and Public Safety (2011). Improving Dementia Services in Northern Ireland. A Regional Strategy. Available at: http://www.dhsspsni.gov.uk/improving-dementia-services-in-northern-ireland-a-regional-strategy-november-2011.pdf; last accessed 19 March 2014.Google Scholar
Gusmano, M. (2012). End-of-life care for patients with dementia in the United States: institutional realities. Health Economics, Policy and Law, 7, 485–498.Google Scholar
Helse-og omsorgsdepartementet (2007). Demensplan 2015 ≪ Den gode dagen ≫. Available at: http://www.regjeringen.no/pages/35878701/demensplan_2015.pdf; last accessed 19 March 2014.Google Scholar
L’Equipe de la Mission Plan Alzheimer (2008). Plan ≪ Alzheimer et maladies apparentées ≫ 2008–2012. Available at: http://www.plan-alzheimer.gouv.fr/IMG/pdf/plan-alzheimer-2008-2012.pdf; last accessed 19 March 2014.Google Scholar
L’Equipe de la Mission Plan Alzheimer (2012). National Plan for “Alzheimer and Related Diseases” 2008–2012. Available at: http://www.plan-alzheimer.gouv.fr/IMG/pdf/Plan_Alzheimer_2008-2012_uk.pdf; last accessed 1 April 2014.Google Scholar
Ministerie van Volksgezondheid, Welzijn en Sport, Zorgverzekeraars Nederland, Alzheimer Nederland, ActiZ (2009). Leidraad Ketenzorg Dementie. Een Hulpmiddel voor de Ontwikkeling van Ketenzorg Dementie. Available at: http://www.handreikingketenzorg.nl/upload/userfiles/File/Leidraad_ketenzorg_dementie_2009_final%5B1%5D.pdf; last accessed 19 March 2014.Google Scholar
Ministry of Health, Labour and Welfare (2012a). Report on “Direction of Future Policies for Dementia.” Available at: http://www.mhlw.go.jp/topics/kaigo/dementia/dl/houkousei-02.pdf; last accessed 24 April 2014.Google Scholar
Ministry of Health, Labour and Welfare (2012b). 5-year Plan for Promotion of Measures against Dementia (Orange Plan). Available from: http://www.mhlw.go.jp/stf/houdou/2r9852000002j8dh-att/2r9852000002j8ey.pdf; last accessed 19 March 2014.Google Scholar
Ministry of Health and Welfare (2008). Dementia Comprehensive Management Measures. Available at: http://stat.mw.go.kr/front/include/download.jsp?bbsSeq=7&nttSeq=11067&atchSeq=1210; last accessed 19 March 2014.Google Scholar
Ministry of Health and Welfare (2012). Second National Dementia Management Comprehensive Plan. Available at: http://download.mw.go.kr/front_new/modules/download.jsp?BOARD_ID=140&CONT_SEQ=274723&FILE_SEQ=113937; last accessed 19 March 2014.Google Scholar
Ministry of Health, Welfare and Sport, Zorgverzekeraars Nederland, Alzheimer Nederland, ActiZ (2009). Guideline for integrated dementia care [excerpt]. Available at: http://ec.europa.eu/social/BlobServlet?docId=8275&langId=en; last accessed 22 August 2014.Google Scholar
Ministry of Social Affairs and Health (2013). National Memory Programme 2012–2020. CREATING A “MEMORY-FRIENDLY” FINLAND. Available at: http://www.alzheimer-europe.org/content/download/40967/269054/file/Finland%20National%20Memory%20Programme%202012-2020.pdf; last accessed 1 April 2014.Google Scholar
Nakanishi, M. and Nakashima, T. (2014). Features of the Japanese national dementia strategy in comparison with international dementia policies: How should a national dementia policy interact with the public health- and social-care systems? Alzheimer's & Dementia, 10, 468–476.CrossRefGoogle ScholarPubMed
Nederlandse Federatie van Universitair Medische Centra, Alzheimer Nederland, VUmc Alzheimercentrum, ZonMw (2012). Deltaplan Dementie 2012–2020. Available at: http://www.zonmw.nl/uploads/tx_vipublicaties/rapport-deltaplan-dementie.pdf; last accessed 19 March 2014.Google Scholar
Norwegian Ministry of Health and Care Services (2008). Subplan of Care Plan 2015. Dementia Plan 2015. Available at: http://www.alzheimer-europe.org/content/download/6976/71005/file/Dementia%20Plan%202015%20-%20Norway.pdf; last accessed 1 April 2014.Google Scholar
Pastrana, T., Junger, S., Ostgathe, C., Elsner, F. and Radbruch, L. (2008). A matter of definition - key elements identified in a discourse analysis of definitions of palliative care. Palliative Medicine, 22, 222–232.Google Scholar
Socialministreriet og Indenrigs-og Sundhedsministeriet (2010). National Handlingsplan for Demensindsatsen. Available at: http://www.sm.dk/Data/Dokumentertilpublikationer/Publikationer%202010/Demensindsats%202010/Demens_handlingsplan14-12.pdf; last accessed 19 March 2014.Google Scholar
Socialstyrelsen (2010). Nationella riktlinjer för vård och omsorg vid demenssjukdom 2010 – stöd för styrning och ledning. Available at: http://www.socialstyrelsen.se/Lists/Artikelkatalog/Attachments/18012/2010-5-1.pdf; last accessed 19 March 2014.Google Scholar
Socialstyrelsen (2013). Nationellt kunskapsstöd för god palliativ vård i livets slutskede – Vägledning, rekommendationer och indikatorer – Stöd för styrning och ledning. Available at: http://www.socialstyrelsen.se/Lists/Artikelkatalog/Attachments/19107/2013-6-4.pdf; last accessed 19 March 2014.Google Scholar
Sosiaali- ja terveysministeriö (2010). Hyvä saattohoito Suomessa. Asiantuntijakuulemiseen perustuvat saattohoitosuositukset. Available at: http://www.stm.fi/c/document_library/get_file?folderId=1087414&name=DLFE-12411.pdf; last accessed 31 March 2014.Google Scholar
Sosiaali-ja terveysministeriö (2012). Kansallinen Muistiohjelma 2012–2020. Tavoitteena muistiystävällinen Suomi. Available at: http://www.stm.fi/c/document_library/get_file?folderId=5065240&name=DLFE-20011.pdf; last accessed 19 March 2014.Google Scholar
The Scottish Government (2008). Living and Dying Well: A national action plan for palliative and end of life care in Scotland. Available at: http://www.scotland.gov.uk/Resource/Doc/239823/0066155.pdf; last accessed 1 April 2014.Google Scholar
The Scottish Government (2010). Scotland's National Dementia Strategy. Available at: http://www.scotland.gov.uk/Resource/Doc/324377/0104420.pdf; last accessed 19 March 2014.Google Scholar
The Scottish Government (2013). Scotland's National Dementia Strategy 2013–2016. Available at: http://www.scotland.gov.uk/Resource/0042/00423472.pdf; last accessed 19 March 2014.Google Scholar
U.S. Department of Health and Human Services (2013). National Plan to Address Alzheimer's Disease: 2013 Update. Available at: http://aspe.hhs.gov/daltcp/napa/NatlPlan2013.pdf; last accessed 19 March 2014.Google Scholar
van der Steen, J. T. (2010). Dying with dementia: what we know after more than a decade of research. Journal of Alzheimer's Disease, 22, 37–55.Google Scholar
van der Steen, J. T., Hertogh, C. M. P. M., de Graas, T., Nakanishi, M., Toscani, F. and Arcand, M. (2013). Translation and cross-cultural adaptation of a booklet on comfort care in dementia: sensitive topics revised before implementation. Journal of Medical Ethics, 39, 104–109.Google Scholar
van der Steen, J. T. et al. (2014). White paper defining palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliative Medicine, 28, 197–209.CrossRefGoogle ScholarPubMed
Welsh Assembly Government (2011). National Dementia Vision for Wales. Dementia Supportive Communities. Available at: http://wales.gov.uk/docs/dhss/publications/110302dementiaen.pdf; last accessed 19 March 2014.Google Scholar
World Health Assembly (2014). Strengthening of Palliative Care as a Component of Comprehensive Care within the Continuum of Care. In. Geneva: World Health Organization; 2014. Available at: http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R19-en.pdf; last accessed 14 July 2014.Google Scholar
Worldwide Palliative Care Alliance (2014). WHO Global Atlas on Palliaztive Care At the End of Life. Available at: http://www.thewhpca.org/resources/global-atlas-on-end-of-life-care; last accessed 6 January 2015.Google Scholar
Yaguchi, A. et al. (2005). International differences in end-of-life attitudes in the intensive care unit. Results of a survey. Archives of Internal Medicine, 165, 1970–1975.CrossRefGoogle ScholarPubMed
ZonMw (2013). Memorabel. Programmatekst Onderzoeks- en Innovatieprogramma Dementie. Available at: http://deltaplandementie.nl//wp-content/uploads/2013/09/Memorabel.pdf; last accessed 3 April 2014.Google Scholar
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