title: Achieving consensus and controversy around applicability of palliative care to dementia.
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.
authors.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.
authors.forename: Jenny T
authors.initials: JT
authors.lastname: van der Steen
authors.affiliation: Department of Palliative Medicine,University Hospital Bonn,Bonn,Germany; andPalliative Care Centre,Malteser Hospital Bonn/Rhein-Sieg,Von-Hompesch-Str. 1,53123 Bonn,Germany.
authors.forename: Lukas
authors.initials: L
authors.lastname: Radbruch
authors.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.
authors.forename: Marike E
authors.initials: ME
authors.lastname: de Boer
authors.affiliation: Institute of General Medicine,Hannover Medical School,Carl-Neuberg-Straße 1,30625 Hannover,Germany.
authors.forename: Saskia
authors.initials: S
authors.lastname: Jünger
authors.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.
authors.forename: Julian C
authors.initials: JC
authors.lastname: Hughes
authors.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.
authors.forename: Phil
authors.initials: P
authors.lastname: Larkin
authors.affiliation: Alzheimer Europe,14 rue Dicks,1417 Luxembourg,Luxembourg.
authors.forename: Dianne
authors.initials: D
authors.lastname: Gove
authors.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.
authors.forename: Anneke L
authors.initials: AL
authors.lastname: Francke
authors.affiliation: Radboud University Medical Center,Department of Primary and Community Care,P.O. Box 9101,postal code 117 ELG,6500 HB Nijmegen,the Netherlands; andJoachim & Anna,Center for Specialized Geriatric Care (Waalboog),Groesbeekseweg 327,6523 PA Nijmegen,the Netherlands.
authors.forename: Raymond T C M
authors.initials: RT
authors.lastname: Koopmans
authors.affiliation: 5 Langham Close,St Albans,AL49YH,UK.
authors.forename: Pam
authors.initials: P
authors.lastname: Firth
authors.affiliation: University of South Florida,School of Aging Studies,Tampa,4202 E.Fowler Ave,FL 34639,USA.
authors.forename: Ladislav
authors.initials: L
authors.lastname: Volicer
authors.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.
authors.forename: Cees M P M
authors.initials: CM
authors.lastname: Hertogh
mesh_terms: D000328:Adult; D000368:Aged; D032921:Consensus; D003697:Delphi Technique; D003704:Dementia / Q000628:therapy*; D005060:Europe; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D015999:Multivariate Analysis; D010166:Palliative Care / Q000592:standards*; D017410:Practice Guidelines as Topic; D012044:Regression Analysis; D012955:Societies, Medical
keywords: comfort care; consensus; dementia; end of life; guidelines; palliative care