title: Factors associated with initiation of advance care planning in dementia: a systematic review.
abstract: BACKGROUND
  Planning ahead may be particularly relevant in dementia considering patients' cognitive decline and difficulty to predict the course of the dementia.
  
  
  OBJECTIVE
  To identify factors associated with initiation of advance care planning (ACP) regarding end-of-life issues in dementia.
  
  
  METHODS
  Systematic review of the PubMed, Embase, Cinahl, Psychinfo, and Cochrane databases until January 2013. We included articles reporting on empirical research, identifying factors related to initiation of ACP defined as starting a discussion, starting the decision making, or having a documented patient-written advance directive.
  
  
  RESULTS
  Of 4,647 unique articles, we assessed 178 as full-texts, and included 33. Most designs (64%) were qualitative; 42% limited to moderate to severe, and 6% to mild to moderate stages. Perspectives varied: family (33%), professional caregivers (24%), patient (15%), or multiple (27%). A variety of factors with complex interplay was involved in initiating ACP. Family factors dominated, with family's initiative or lack of it, and willingness or reluctance to engage in initiating ACP identified in a series of studies. Further, professional caregivers' initiative or lack of it and patient's health status were important factors that facilitated or hindered initiating ACP. Ethnic minority status of those involved and family distance may be barriers. Continuity of care and health care system factors also affected initiating of ACP.
  
  
  CONCLUSIONS
  Professional caregivers may initiate ACP early if strategies carefully consider timing and family and patient receptiveness or reluctance, and are family and patient-centered. Interventions should address the complexity of interrelated system and personal factors affecting initiation of ACP.
authors: Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
authors: Jenny T
authors: JT
authors: van der Steen
authors: Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
authors: Mirjam C
authors: MC
authors: van Soest-Poortvliet
authors: Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
authors: Meertje
authors: M
authors: Hallie-Heierman
authors: Department of Public and Occupational Health, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
authors: Bregje D
authors: BD
authors: Onwuteaka-Philipsen
authors: Department of Public and Occupational Health, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands End-of-Life Care Research Group, Vrije Universiteit Brussel & Ghent University, Vrije Universiteit Brussel (VUB), Brussels, Belgium.
authors: Luc
authors: L
authors: Deliens
authors: Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
authors: Marike E
authors: ME
authors: de Boer
authors: End-of-Life Care Research Group, Vrije Universiteit Brussel & Ghent University, Vrije Universiteit Brussel (VUB), Brussels, Belgium.
authors: Lieve
authors: L
authors: Van den Block
authors: End-of-Life Care Research Group, Vrije Universiteit Brussel & Ghent University, Vrije Universiteit Brussel (VUB), Brussels, Belgium.
authors: Nicole
authors: N
authors: van Uden
authors: Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
authors: Cees M P M
authors: CM
authors: Hertogh
authors: Department of Epidemiology and Biostatistics, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
authors: Henrica C W
authors: HC
authors: de Vet
mesh_terms: D032722:Advance Care Planning; D017028:Caregivers; D003072:Cognition Disorders / Q000209:etiology; D016208:Databases, Factual / Q000706:statistics & numerical data; D003704:Dementia / Q000150:complications / Q000451:nursing*; D006801:Humans
keywords: advance care planning; decision making; dementia; end of life care; hospice care; long-term care; palliative care; professional-family relations; professional-patient relations