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

(2014) JOURNAL OF ALZHEIMERS DISEASE. 40(3). p.743-757
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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. 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
OLDER-PEOPLE, FAMILY CAREGIVERS, COGNITIVE IMPAIRMENT, dementia, hospice care, end of life care, decision making, long-term care, advance care planning, palliative care, professional-family relations, professional-patient relations, END-OF-LIFE, NURSING-HOME RESIDENTS, RANDOMIZED CONTROLLED-TRIAL, ELDERLY-PATIENTS, DECISION-MAKING, ALZHEIMERS-DISEASE, PALLIATIVE CARE

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MLA
van der Steen, Jenny T, Mirjam C van Soest-Poortvliet, Meertje Hallie-Heierman, et al. “Factors Associated with Initiation of Advance Care Planning in Dementia: a Systematic Review.” JOURNAL OF ALZHEIMERS DISEASE 40.3 (2014): 743–757. Print.
APA
van der Steen, J. T., van Soest-Poortvliet, M. C., Hallie-Heierman, M., Onwuteaka-Philipsen, B. D., Deliens, L., de Boer, M. E., Van den Block, L., et al. (2014). Factors associated with initiation of advance care planning in dementia: a systematic review. JOURNAL OF ALZHEIMERS DISEASE, 40(3), 743–757.
Chicago author-date
van der Steen, Jenny T, Mirjam C van Soest-Poortvliet, Meertje Hallie-Heierman, Bregje D Onwuteaka-Philipsen, Luc Deliens, Marike E de Boer, Lieve Van den Block, Nicole van Uden, Cees MPM Hertogh, and Henrica CW de Vet. 2014. “Factors Associated with Initiation of Advance Care Planning in Dementia: a Systematic Review.” Journal of Alzheimers Disease 40 (3): 743–757.
Chicago author-date (all authors)
van der Steen, Jenny T, Mirjam C van Soest-Poortvliet, Meertje Hallie-Heierman, Bregje D Onwuteaka-Philipsen, Luc Deliens, Marike E de Boer, Lieve Van den Block, Nicole van Uden, Cees MPM Hertogh, and Henrica CW de Vet. 2014. “Factors Associated with Initiation of Advance Care Planning in Dementia: a Systematic Review.” Journal of Alzheimers Disease 40 (3): 743–757.
Vancouver
1.
van der Steen JT, van Soest-Poortvliet MC, Hallie-Heierman M, Onwuteaka-Philipsen BD, Deliens L, de Boer ME, et al. Factors associated with initiation of advance care planning in dementia: a systematic review. JOURNAL OF ALZHEIMERS DISEASE. 2014;40(3):743–57.
IEEE
[1]
J. T. van der Steen et al., “Factors associated with initiation of advance care planning in dementia: a systematic review,” JOURNAL OF ALZHEIMERS DISEASE, vol. 40, no. 3, pp. 743–757, 2014.
@article{5770826,
  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. 
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.},
  author       = {van der Steen, Jenny T and van Soest-Poortvliet, Mirjam C and Hallie-Heierman, Meertje and Onwuteaka-Philipsen, Bregje D and Deliens, Luc and de Boer, Marike E and Van den Block, Lieve and van Uden, Nicole and Hertogh, Cees MPM and de Vet, Henrica CW},
  issn         = {1387-2877},
  journal      = {JOURNAL OF ALZHEIMERS DISEASE},
  keywords     = {OLDER-PEOPLE,FAMILY CAREGIVERS,COGNITIVE IMPAIRMENT,dementia,hospice care,end of life care,decision making,long-term care,advance care planning,palliative care,professional-family relations,professional-patient relations,END-OF-LIFE,NURSING-HOME RESIDENTS,RANDOMIZED CONTROLLED-TRIAL,ELDERLY-PATIENTS,DECISION-MAKING,ALZHEIMERS-DISEASE,PALLIATIVE CARE},
  language     = {eng},
  number       = {3},
  pages        = {743--757},
  title        = {Factors associated with initiation of advance care planning in dementia: a systematic review},
  url          = {http://dx.doi.org/10.3233/JAD-131967},
  volume       = {40},
  year         = {2014},
}

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