Review Article| Volume 22, ISSUE 10, P2056-2062.e4, October 2021

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Decision-Making in People With Dementia or Mild Cognitive Impairment: A Narrative Review of Decision-Making Tools



      This review summarized the applicability of various decision-making tools for helping people with dementia or mild cognitive impairment (MCI) and their families make decisions.


      This study was a narrative literature review. The protocol of this review was registered in the International Prospective Register of Systematic Reviews (PROSPERO ID: CRD42020182259).

      Setting and Participants

      People with dementia or MCI and their families were included in this study.


      This review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. We searched the Cochrane Library, PubMed, Embase, Cumulative Index to Nursing and Allied Health Literature, and Chinese Electronic Periodical Services databases from inception to May 2021. The Joanna Briggs Institute Critical Appraisal Checklists for a variety of study designs were used.


      Topics related to decision-making were categorized as everyday activity decisions or medical treatment decisions. Various types of decision-making tools were identified, and we observed that decision aids can be modified and used for both everyday activity decisions and medical treatment decisions. In addition to highlighting decision aids for specific decisional issues and topics, we also elucidated other validated tools that can be used to facilitate the decision-making process.

      Conclusions and Implications

      This study highlighted the topics involved in decision-making and using decision-making tools. The current review provides information that can help individuals and health care professionals choose optimal decision-making tools. On the basis of our findings, future studies can determine the most appropriate tools for intervention or outcome measures.


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        • Reisberg B.
        • Ferris S.H.
        • de Leon M.J.
        • et al.
        The Global Deterioration Scale for assessment of primary degenerative dementia.
        Am J Psychiatry. 1982; 139: 1136-1139
        • World Health Organization
        Dementia 2020.
        (Available at:)
        • Sachs-Ericsson N.
        • Blazer D.G.
        The new DSM-5 diagnosis of mild neurocognitive disorder and its relation to research in mild cognitive impairment.
        Aging Ment Health. 2015; 19: 2-12
        • Roberts R.O.
        • Knopman D.S.
        • Mielke M.M.
        • et al.
        Higher risk of progression to dementia in mild cognitive impairment cases who revert to normal.
        Neurology. 2014; 82: 317-325
        • Livingston G.
        • Huntley J.
        • Sommerlad A.
        • et al.
        Dementia prevention, intervention, and care: 2020 report of the lancet commission.
        Lancet. 2020; 396: 413-446
        • Davies N.
        • Schiowitz B.
        • Rait G.
        • et al.
        Decision aids to support decision-making in dementia care: A systematic review.
        Int Psychogeriatr. 2019; 31: 1403-1419
        • Sun T.
        • Xie T.
        • Wang J.
        • et al.
        Decision-making under ambiguity or risk in individuals with Alzheimer's disease and mild cognitive impairment.
        Front Psychiatry. 2020; 11: 218
        • Nibbelink C.W.
        • Brewer B.B.
        Decision-making in nursing practice: An integrative literature review.
        J Clin Nurs. 2018; 27: 917-928
        • Pennington C.
        • Davey K.
        • Ter Meulen R.
        • et al.
        Tools for testing decision-making capacity in dementia.
        Age Ageing. 2018; 47: 778-784
        • Moher D.
        • Liberati A.
        • Tetzlaff J.
        • et al.
        Reprint—preferred reporting Items for systematic reviews and meta-analyses: The PRISMA statement.
        Phys Ther. 2009; 89: 873-880
        • Aromataris E.
        • Munn Z.
        JBI manual for evidence synthesis.
        (Available at:)
        Date accessed: May 28, 2021
        • Dunn L.B.
        • Fisher S.R.
        • Hantke M.
        • et al.
        "Thinking about it for somebody else": Alzheimer's disease research and proxy decision makers' translation of ethical principles into practice.
        Am J Geriatr Psychiatry. 2013; 21: 337-345
        • Einterz S.F.
        • Gilliam R.
        • Lin F.C.
        • et al.
        Development and testing of a decision aid on goals of care for advanced dementia.
        J Am Med Dir Assoc. 2014; 15: 251-255
        • Gurrera R.J.
        • Karel M.J.
        • Azar A.R.
        • et al.
        Agreement between instruments for rating treatment decisional capacity.
        Am J Geriatr Psychiatry. 2007; 15: 168-173
        • Gurrera R.J.
        • Moye J.
        • Karel M.J.
        • et al.
        Cognitive performance predicts treatment decisional abilities in mild to moderate dementia.
        Neurology. 2006; 66: 1367-1372
        • Hanson L.C.
        • Carey T.S.
        • Caprio A.J.
        • et al.
        Improving decision-making for feeding options in advanced dementia: A randomized, controlled trial.
        J Am Geriatr Soc. 2011; 59: 2009-2016
        • Hanson L.C.
        • Zimmerman S.
        • Song M.K.
        • et al.
        Effect of the goals of care intervention for advanced dementia: A randomized clinical trial.
        JAMA Internal Med. 2017; 177: 24-31
        • Huthwaite J.S.
        • Martin R.C.
        • Griffith H.R.
        • et al.
        Declining medical decision-making capacity in mild AD: A two-year longitudinal study.
        Behav Sci Law. 2006; 24: 453-463
        • Karlawish J.
        • Kim S.Y.
        • Knopman D.
        • et al.
        Interpreting the clinical significance of capacity scores for informed consent in Alzheimer disease clinical trials.
        Am J Geriatr Psychiatry. 2008; 16: 568-574
        • Karlawish J.H.
        • Casarett D.J.
        • James B.D.
        Alzheimer's disease patients' and caregivers' capacity, competency, and reasons to enroll in an early-phase Alzheimer's disease clinical trial.
        J Am Geriatr Soc. 2002; 50: 2019-2024
        • Kim S.Y.
        • Cox C.
        • Caine E.D.
        Impaired decision-making ability in subjects with Alzheimer's disease and willingness to participate in research.
        Am J Psychiatry. 2002; 159: 797-802
        • Mak W.
        • Sorensen S.
        Trajectories of preparation for future care among first-degree relatives of Alzheimer's disease patients: An ancillary study of ADAPT.
        Gerontologist. 2012; 52: 531-540
        • Menne H.L.
        • Tucke S.S.
        • Whitlatch C.J.
        • et al.
        Decision-making involvement scale for individuals with dementia and family caregivers.
        Am J Alzheimers Dis Other Demen. 2008; 23: 23-29
        • Moye J.
        • Karel M.J.
        • Azar A.R.
        • et al.
        Capacity to consent to treatment: Empirical comparison of three instruments in older adults with and without dementia.
        Gerontologist. 2004; 44: 166-175
        • Mueller T.
        • Haberstroh J.
        • Knebel M.
        • et al.
        Assessing capacity to consent to treatment with cholinesterase inhibitors in dementia using a specific and standardized version of the MacArthur Competence Assessment Tool (MacCAT-T).
        Int Psychogeriatr. 2017; 29: 333-343
        • Noh H.
        • Kwak J.
        End-of-life decision making for persons with dementia: Proxies' perception of support.
        Dementia (London). 2018; 17: 478-493
        • Palmer B.W.
        • Harmell A.L.
        • Pinto L.L.
        • et al.
        Determinants of capacity to consent to research on Alzheimer's disease.
        Clin Gerontol. 2017; 40: 24-34
        • Rubright J.
        • Sankar P.
        • Casarett D.J.
        • et al.
        A memory and organizational aid improves Alzheimer disease research consent capacity: Results of a randomized, controlled trial.
        Am J Geriatr Psychiatry. 2010; 18: 1124-1132
        • Snyder E.A.
        • Caprio A.J.
        • Wessell K.
        • et al.
        Impact of a decision aid on surrogate decision-makers' perceptions of feeding options for patients with dementia.
        J Am Med Dir Assoc. 2013; 14: 114-118
        • Triebel K.L.
        • Martin R.
        • Griffith H.R.
        • et al.
        Declining financial capacity in mild cognitive impairment: A 1-year longitudinal study.
        Neurology. 2009; 73: 928-934
        • Carmody J.
        • Potter J.
        • Lewis K.
        • et al.
        Development and pilot testing of a decision aid for drivers with dementia.
        BMC Med Inform Decis Mak. 2014; 14: 19
        • Fetherstonhaugh D.
        • McAuliffe L.
        • Bauer M.
        • et al.
        Decision-making on behalf of people living with dementia: How do surrogate decision-makers decide?.
        J Med Ethics. 2017; 43: 35-40
        • Stirling C.
        • Leggett S.
        • Lloyd B.
        • et al.
        Decision aids for respite service choices by carers of people with dementia: Development and pilot RCT.
        BMC Med Inform Decis Mak. 2012; 12: 21
        • Harrison Dening K.
        • King M.
        • Jones L.
        • et al.
        Advance care planning in dementia: Do family carers know the treatment preferences of people with early dementia?.
        PloS One. 2016; 11: e0159056
        • Lord K.
        • Livingston G.
        • Cooper C.
        A feasibility randomised controlled trial of the DECIDE intervention: Dementia carers making informed decisions.
        BJPsych Open. 2017; 3: 12-14
        • Bogza L.M.
        • Patry-Lebeau C.
        • Farmanova E.
        • et al.
        User-centered design and evaluation of a web-based decision aid for older adults living with mild cognitive impairment and their health care providers: A mixed methods study.
        J Med Internet Res. 2020; 22: e17406
        • Mitchell S.L.
        • Tetroe J.
        • O'Connor A.M.
        A decision aid for long-term tube feeding in cognitively impaired older persons.
        J Am Geriatr Soc. 2001; 49: 313-316
        • Hamann J.
        • Bronner K.
        • Margull J.
        • et al.
        Patient participation in medical and social decisions in Alzheimer's disease.
        J Am Geriatr Soc. 2011; 59: 2045-2052
        • Lui V.W.
        • Lam L.C.
        • Chau R.C.
        • et al.
        Capacity to make decisions on medication management in Chinese older persons with mild cognitive impairment and mild Alzheimer's disease.
        Int Psychogeriatr. 2012; 24: 1103-1111
        • Lui V.W.
        • Lam L.C.
        • Chau R.C.
        • et al.
        Structured assessment of mental capacity to make financial decisions in Chinese older persons with mild cognitive impairment and mild Alzheimer disease.
        J Geriatr Psychiatry Neurol. 2013; 26: 69-77
        • Liu C.L.
        • Lin N.Y.
        Development of shared decision making and patient decision aids by using “guide to feeding options for patients with advanced dementia” as an example.
        VGH Nurs. 2019; 36: 170-177
        • Santos R.L.
        • Sousa M.F.
        • Simões J.P.N.
        • et al.
        MacArthur competence assessment tool for treatment in Alzheimer disease: Cross-cultural adaptation.
        Arq Neuropsiquiatr. 2017; 75: 36-43
        • Arcand M.
        • Brazil K.
        • Nakanishi M.
        • et al.
        Educating families about end-of-life care in advanced dementia: Acceptability of a Canadian family booklet to nurses from Canada, France, and Japan.
        Int J Palliat Nurs. 2013; 19: 67-74
        • van der Steen J.T.
        • Arcand M.
        • Toscani F.
        • et al.
        A family booklet about comfort care in advanced dementia: Three-country evaluation.
        J Am Med Dir Assoc. 2012; 13: 368-375
        • van der Steen J.T.
        • Hertogh C.M.
        • de Graas T.
        • et al.
        Translation and cross-cultural adaptation of a family booklet on comfort care in dementia: Sensitive topics revised before implementation.
        J Med Ethics. 2013; 39: 104-109
        • van der Steen J.T.
        • Toscani F.
        • de Graas T.
        • et al.
        Physicians' and nurses' perceived usefulness and acceptability of a family information booklet about comfort care in advanced dementia.
        J Palliat Med. 2011; 14: 614-622
        • Wu C.Y.
        • Chang Y.H.
        • Liu Z.Y.
        • et al.
        Apply shared-decision making concept to assist elderly patient with severe dementia and renal failure to receive palliative care: Case report.
        J Taiwan Assoc Gerontol Geriatr. 2019; 14: 229-242
        • Huang H.L.
        • Hsu S.M.
        • Wang B.Y.
        • et al.
        Difficulty of tube feeding decision among persons with advanced dementia and intervention.
        J Long-Term Care. 2016; 20: 185-198
        • Yang C.Y.
        • Tien E.T.
        • Lin H.Y.
        • et al.
        Advance care planning for patients with dementia.
        Taipei City Med J. 2019; 16: 110-119
        • Grisso T.
        • Appelbaum P.S.
        • Hill-Fotouhi C.
        The MacCAT-T: A clinical tool to assess patients' capacities to make treatment decisions.
        Psychiatr Serv. 1997; 48: 1415-1419
        • Schaefer L.A.
        MacArthur competence assessment tools.
        in: Kreutzer J.S. DeLuca J. Caplan B. Encyclopedia of Clinical Neuropsychology. Springer New York, New York, NY2011: 1502-1505
        • Edelstein B.
        Challenges in the assessment of decision-making capacity.
        J Aging Stud. 2000; 14: 423-437
        • Marson D.C.
        • Ingram K.K.
        • Cody H.A.
        • et al.
        Assessing the competency of patients with Alzheimer's disease under different legal standards. A prototype instrument.
        Arch Neurol. 1995; 52: 949-954
        • The Ottawa Hospital Research Institute
        Development methods for Ottawa patient decision aids.
        (Available at:)
        Date accessed: May 30, 2021