Factors associated with initiation of advance care planning in dementia: a systematic review

J Alzheimers Dis. 2014;40(3):743-57. doi: 10.3233/JAD-131967.


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.

Conclusion: 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.

Keywords: advance care planning; decision making; dementia; end of life care; hospice care; long-term care; palliative care; professional-family relations; professional-patient relations.

Publication types

  • Research Support, Non-U.S. Gov't
  • Review
  • Systematic Review

MeSH terms

  • Advance Care Planning*
  • Caregivers
  • Cognition Disorders / etiology
  • Databases, Factual / statistics & numerical data
  • Dementia / complications
  • Dementia / nursing*
  • Humans