End-of-life decision making by family caregivers of persons with advanced dementia: A literature review of decision aids
- PMID: 29844911
- PMCID: PMC5966844
- DOI: 10.1177/2050312118777517
End-of-life decision making by family caregivers of persons with advanced dementia: A literature review of decision aids
Abstract
Objectives: To investigate existing knowledge in the literature about end-of-life decision making by family caregivers of persons with dementia, focusing on decision aids for caregivers of persons with advanced dementia, and to identify gaps in the literature that can guide future research.
Methods: A literature review through systematic searches in PubMed, CINAHL Plus with Full Text, and PsycINFO was conducted in February 2018; publications with full text in English and published in the past 10 years were selected in multiple steps.
Results: The final sample included five decision aids with predominantly Caucasian participants; three of them had control groups, and three used audiovisual technology in presenting the intervention materials. No other technology was used in any intervention. Existing interventions lacked tailoring of information to caregivers' preferences for different types and amounts of information necessary to make decisions consistent with patients' values.
Conclusion: Research is needed in exploring the use of technology in decision aids that could provide tailored information to facilitate caregivers' decision making. More diverse samples are needed.
Keywords: Alzheimer’s; Dementia; decision aids; end-of-life; family caregivers.
Conflict of interest statement
Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Similar articles
-
Decision Aid Interventions for Family Caregivers of Persons With Advanced Dementia in Decision-Making About Feeding Options: A Scoping Review.J Am Med Dir Assoc. 2022 Dec;23(12):1927.e1-1927.e6. doi: 10.1016/j.jamda.2022.08.014. Epub 2022 Sep 21. J Am Med Dir Assoc. 2022. PMID: 36150408 Free PMC article.
-
[The Impact of Family-Centered Advance Care Planning for Persons With Dementia and Family Caregivers on Decision-Making Conflicts in End-of-Life Care].Hu Li Za Zhi. 2021 Feb;68(1):30-42. doi: 10.6224/JN.202102_68(1).06. Hu Li Za Zhi. 2021. PMID: 33521917 Chinese.
-
The experience of providing end-of-life care to a relative with advanced dementia: an integrative literature review.Palliat Support Care. 2013 Apr;11(2):155-68. doi: 10.1017/S1478951512000831. Epub 2012 Oct 23. Palliat Support Care. 2013. PMID: 23088769 Review.
-
Tailoring and evaluating an intervention to improve shared decision-making among seniors with dementia, their caregivers, and healthcare providers: study protocol for a randomized controlled trial.Trials. 2018 Jun 25;19(1):332. doi: 10.1186/s13063-018-2697-1. Trials. 2018. PMID: 29941020 Free PMC article.
-
Acceptability of psychosocial interventions for dementia caregivers: a systematic review.BMC Psychiatry. 2019 Jan 14;19(1):23. doi: 10.1186/s12888-018-1976-4. BMC Psychiatry. 2019. PMID: 30642300 Free PMC article.
Cited by
-
The Impact of Dementia on Cancer Treatment Decision-Making, Cancer Treatment, and Mortality: A Mixed Studies Review.JNCI Cancer Spectr. 2021 Jan 27;5(3):pkab002. doi: 10.1093/jncics/pkab002. eCollection 2021 Jun. JNCI Cancer Spectr. 2021. PMID: 34056540 Free PMC article. Review.
-
Artificial Intelligence for Caregivers of Persons With Alzheimer's Disease and Related Dementias: Systematic Literature Review.JMIR Med Inform. 2020 Aug 20;8(8):e18189. doi: 10.2196/18189. JMIR Med Inform. 2020. PMID: 32663146 Free PMC article. Review.
-
The impact of the mySupport advance care planning intervention on family caregivers' perceptions of decision-making and care for nursing home residents with dementia: pretest-posttest study in six countries.Age Ageing. 2023 Mar 1;52(3):afad027. doi: 10.1093/ageing/afad027. Age Ageing. 2023. PMID: 36861181 Free PMC article.
-
"Imagine You Have ALS": Death Education to Prepare for Advance Treatment Directives.Behav Sci (Basel). 2021 Jan 6;11(1):6. doi: 10.3390/bs11010006. Behav Sci (Basel). 2021. PMID: 33419214 Free PMC article.
-
Resources to Support Decision-Making Regarding End-of-Life Nutrition Care in Long-Term Care: A Scoping Review.Nutrients. 2024 Apr 13;16(8):1163. doi: 10.3390/nu16081163. Nutrients. 2024. PMID: 38674853 Free PMC article.
References
-
- Alzheimer’s Association. 2016 Alzheimer’s disease facts and figures. Alzheimers Dement 2016; 12(4): 459–509. - PubMed
-
- De la Cuesta-Benjumea C. The legitimacy of rest: conditions for the relief of burden in advanced dementia care-giving. J Adv Nurs 2010; 66(5): 988–998. - PubMed
-
- National Academies of Sciences, Engineering, and Medicine. Families caring for an aging America. Washington, DC: The National Academies Press, 2016. - PubMed
Publication types
LinkOut - more resources
Full Text Sources
Other Literature Sources
Miscellaneous