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Achieving consensus and controversy around applicability of palliative care to dementia

Published online by Cambridge University Press:  10 June 2015

Jenny T. van der Steen ,
Lukas Radbruch ,
Marike E. de Boer ,
Saskia Jünger ,
Julian C. Hughes ,
Phil Larkin ,
Dianne Gove ,
Anneke L. Francke ,
Raymond T.C.M. Koopmans  and
Pam Firth
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Jenny T. van der Steen*
Affiliation:
Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Van der Boechorststraat 7, 1081BT Amsterdam, the Netherlands
Lukas Radbruch
Affiliation:
Department of Palliative Medicine, University Hospital Bonn, Bonn, Germany; and Palliative Care Centre, Malteser Hospital Bonn/Rhein-Sieg, Von-Hompesch-Str. 1, 53123 Bonn, Germany
Marike E. de Boer
Affiliation:
Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Van der Boechorststraat 7, 1081BT Amsterdam, the Netherlands
Saskia Jünger
Affiliation:
Institute of General Medicine, Hannover Medical School, Carl-Neuberg-Straße 1, 30625 Hannover, Germany
Julian C. Hughes
Affiliation:
Northumbria Healthcare NHS Foundation Trust, North Tyneside General Hospital, Rake Lane, North Shields, Tyne and Wear, NE29 8NH and Policy, Ethics and Life Science (PEALS) Research Centre, Newcastle University, UK
Phil Larkin
Affiliation:
UCD School of Nursing, Midwifery and Health Systems and Our Lady's Hospice and Care Services, UCD College of Health Sciences, Belfield, Dublin 4, Ireland
Dianne Gove
Affiliation:
Alzheimer Europe, 14 rue Dicks, 1417 Luxembourg, Luxembourg
Anneke L. Francke
Affiliation:
Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Van der Boechorststraat 7, 1081BT Amsterdam, the Netherlands Public and Occupational Health, NIVEL, Netherlands Institute for Health Services Research, PO Box 1568 3500 BN Utrecht, the Netherlands
Raymond T.C.M. Koopmans
Affiliation:
Radboud University Medical Center, Department of Primary and Community Care, P.O. Box 9101, postal code 117 ELG, 6500 HB Nijmegen, the Netherlands; and Joachim & Anna, Center for Specialized Geriatric Care (Waalboog), Groesbeekseweg 327, 6523 PA Nijmegen, the Netherlands
Pam Firth
Affiliation:
5 Langham Close, St Albans, AL49YH, UK
Ladislav Volicer
Affiliation:
University of South Florida, School of Aging Studies, Tampa, 4202 E.Fowler Ave, FL 34639, USA
Cees M.P.M. Hertogh
Affiliation:
Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Van der Boechorststraat 7, 1081BT Amsterdam, the Netherlands
*
Correspondence should be addressed to: Jenny T. van der Steen, PhD; VU University Medical Center, EMGO Institute for Health and Care Research, Department of General Practice & Elderly Care Medicine, Van der Boechorststraat 7, 1081 BT Amsterdam, the Netherlands. Phone: +31-20-4449694; Email: [email protected].
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Abstract

Background:

People with dementia may benefit from palliative care which specifically addresses the needs of patients and families affected by this life-limiting disease. On behalf of the European Association for Palliative Care (EAPC), we recently performed a Delphi study to define domains for palliative care in dementia and to provide recommendations for optimal care. An international panel of experts in palliative care, dementia care or both, achieved consensus on almost all domains and recommendations, but the domain concerning the applicability of palliative care to dementia required revision.

Methods:

To examine in detail, the opinions of the international panel of 64 experts around the applicability of palliative care, we explored feedback they provided in the Delphi process. To examine which experts found it less important or less applicable, ordinal regression analyses related characteristics of the panelists to ratings of overall importance of the applicability domain, and to agreement with the domain's four recommendations.

Results:

Some experts expressed concerns about bringing up end-of-life issues prematurely and about relabeling dementia care as palliative care. Multivariable analyses with the two outcomes of importance and agreement with applicability indicated that younger or less experienced experts and those whose expertise was predominantly in dementia care found palliative care in dementia less important and less applicable.

Conclusions:

Benefits of palliative care in dementia are acknowledged by experts worldwide, but there is some controversy around its early introduction. Further studies should weigh concerns expressed around care receiving a “palliative” label versus the benefits of applying palliative care early.

Keywords

comfort careconsensusdementiaend of lifeguidelinespalliative care
Type
Research Article
Information
International Psychogeriatrics , Volume 28 , Issue 1 , January 2016 , pp. 133 - 145
Copyright
Copyright © International Psychogeriatric Association 2015 

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