In most Western societies, adults are presumed to be competent in decision-making regarding their personal, financial, and healthcare affairs.1,2 Decision-making capacity (DMC) is defined as the extent to which an individual is capable of understanding, remembering, and using information to make decisions and communicate their choice(s).3 Capacity to independently make decisions regarding life choices is fundamental to the autonomy of each individual.4
Assessment of DMC of older adults is the focus of much legal and ethical discussion internationally and is emerging as an important issue for society and healthcare systems.5 Our global demographic transition, including increasing aging populations and life expectancy, associated prevalence of dementia-related diseases and chronic health conditions, alongside societal implications for family structure and healthcare systems, suggests a likely increase in the number of people to experience challenges regarding decision-making.2 Moye and Marson6 identified at least eight categories of DMC requiring assessment among older adults: independent living, financial management, driving, consent to treatment, sexual consent, research consent, voting, and testamentary consent. Therefore, the need for extensive, consistent, best-practice processes to assess DMC is likely to increase.
Legislation guiding DMC assessment varies across jurisdictions, but most developed countries assume decision-making is a right of all adults, underpinned by the Convention of the Rights of Person with Disabilities.7 In Ireland, the Assisted Decision-making (Capacity) Act 20158 provides a statutory framework for adults who are experiencing difficulties with decision-making.
There is recognition that DMC is a multi-component construct, and is also time, issue, and context specific. The aforementioned Act sets out a functional approach to DMC assessment whereby the person's DMC is assessed on the basis of their ability to understand the nature and consequence of the decision at the time of decision-making and can express their choice successfully. The legislation also sets out mechanisms to support people with cognitive disabilities in making decisions about their own lives. This Act applies to everyone and therefore has significant implications for those with cognitive disabilities and all health and social care professionals who work with people with cognitive disabilities. Owing to DMC's complexity and significance, professional concerns exist regarding the Act's implementation and integration into practice.9,10
Capacity is a complex ethical, legal, social, and clinical construct.6,11 Approaches to assess and support decision-making are becoming increasingly critical6; this is considered one of the most conceptually and ethically challenging areas of clinical practice.12,13 Assessment of DMC should be a core skill of all clinicians.3 However, challenges with implementing DMC assessment have been identified internationally, including lack of education and training, conflicting understanding of DMC, limited resources, and time pressures.14-16 Brémault-Phillips et al.1 propose that DMC assessment processes and best practice need to be standardized and integrated into routine care to ensure healthcare professionals can determine person-centered outcomes that are the least restrictive and intrusive.
Despite the growing body of research focusing on DMC, only one systematic literature review of the application of UK legislation (Mental Capacity Act, 2005) on DMC assessment of older adults in healthcare has been published.17 This paper reports on the literature that documents the healthcare practice following the Act with frail older adults and identified three themes: i) knowledge and understanding, ii) implementations and tensions in applying the Act, and iii) alternative perspectives on the Act. It concluded that staff need more opportunities to engage, learn, and implement the legislation. Charles et al.5 published findings of a scoping review to examine the current status of physician education regarding DMC assessment and reported increased saliency of DMC assessment due to the aging population, gaps in physicians’ training and education, inconsistent approaches, and tension between ethical principles of autonomy and protection. Some Irish research is currently underway, with a recently published protocol for a study on promoting assisted decision-making among older adults in acute settings.10 However, to date, there has not been a comprehensive review of approaches used to assess DMC of older adults that can inform healthcare providers.
The objective of this review is to identify and map existing evidence to provide an overview of current approaches of assessing decision-making capacity of older adults. The outcome of the review will include a summary of available evidence and policies, and an identification of gaps in research. This scoping review will provide an overview of procedures and assessment approaches in use, and details of how they are used (i.e. timing of assessment, setting, who conducts assessment, what is measured, and how). It is aimed at informing healthcare practitioners in clinical practice, as well as researchers and policy makers of DMC assessment approaches. To the authors’ knowledge, studies evaluating approaches to DMC assessment of older adults have not been systematically scoped. A preliminary search of JBI Database of Systematic Reviews and Implementation Reports, Cochrane Database of Systematic Reviews and PROSPERO was completed in July and December 2018 and found no relevant completed or ongoing systematic or scoping reviews.
- What approaches to assessment of DMC of older adults have been reported?
- Which aspects/domains of DMC of older adults have been explored?
- Which healthcare professionals are involved in DMC assessment?
The review will consider studies that involve older adults. For the definition of older adults used in this review, no age limit will be set, as long as the study describes their population as being older adults. Studies that include a wide age range are eligible as long as the mean/median age of the study population is aged 60 years and over or if they have included a subgroup analysis for the population aged 60 years and over. It will include healthy older adults and those with age-related cognitive impairment, mild cognitive impairment, dementia, and neurodegenerative conditions.
This scoping review will consider studies that provide information about approaches and procedures that are used in DMC assessment of older adults. It will consider the assessment of various DMC domains and will consider related assessments such as cognitive, functional, and proxy assessment.
There will not be a limit of any particular clinical setting, as DMC assessment occurs and is relevant in a variety of settings (e.g. acute hospitals, community and homecare services). The review will not be limited to an Irish context, given the lack of research, but will include published data from western countries and demographic jurisdictions such as the UK, Canada, Australia, and Sweden, which may have similar approaches to DMC assessment.
Types of sources
This scoping review will consider all types of quantitative, qualitative, or mixed-methods studies or reports describing assessment of DMC with older adults. Gray literature that includes information on DMC assessment and support for older adults, including expert opinions and editorials, and papers and reports regarding policies and strategies in use by professional bodies or organizations will also be included.
The JBI scoping review methodological framework,18 which encompasses the work of Arksey and O’Malley19 with refinements by Levac, Colquhoun and O’Brien,20 will be used. The review will be conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) checklist.21
A three-step search strategy will be used. An initial search of databases PubMed and CINAHL for DMC assessment of older adults was conducted, followed by an analysis of text contained in both the title and abstract of retrieved papers and of the index terms used to describe the articles. Key terms were determined through discussions between two authors (RU and TS).
A second search using all keywords and index terms will be undertaken across all included relevant databases. The search will be iterative; as reviewers become more familiar with the evidence bases, additional keywords, sources and search terms found to be useful will be incorporated into the search strategy. Consultation with a research librarian will guide the design and refinement of the search. The search will use keywords and Medical Subject Headings (MeSH) terms as outlined in Appendix I. The search strategies will be created specifically for each database using relevant index and free text terms. The search will cover studies published in English from January 2000 to the present to ensure that included reports are relevant to current clinical practice and legislation. A full search strategy for Embase database is included in Appendix I.
In the third step, the reference list of identified reports and articles will be appraised and screened for additional studies. The titles and abstracts of all identified studies potentially eligible for inclusion in the review will be screened and full-text versions of included articles will be obtained. Authors of primary studies or reviews may be contacted for further information.
The following major databases for healthcare disciplines will be searched: Ovid MEDLINE, PsycINFO, Embase, CINAHL, Cochrane Databases of Systematic Reviews, Web of Science, and Scopus. A hand search of the references of included articles and general search (e.g. Google Scholar) will also be conducted to identify potential relevant studies. The authors will also search conference proceedings of international geriatrics and gerontology societies meetings. Experts in the field will be contacted to retrieve any unpublished studies. The systematic search will be conducted in March 2019, and the searches will be re-run before the final analyses to retrieve more recent studies for inclusion to ensure currency.
All results from database and hand searches will be exported into EndNote X8.2 software (Clarivate Analytics, PA, USA). Duplicates will be removed before each entry will be screened from eligibility. Then, all the titles and abstracts of the studies retrieved will be imported to an Excel spreadsheet (Redmond, Washington, USA) for screening.
Study selection will be undertaken in two stages. Firstly, titles and abstracts will be screened against the inclusion criteria by two independent reviewers (RU and TS). Then, all potentially relevant full-text articles will be retrieved and screened for inclusion in the final review. Any disagreements will be resolved through discussion and consensus.
One review author (RU) will extract data using a standardized data extraction form developed for this review (Appendix II). A second author (TS) will then verify the extracted data. Any discrepancies will be resolved through discussion until consensus is reached. The data extracted for this review will include publication, participant, and assessment characteristics (e.g. domain of capacity addressed, health professionals involved, assessment measures used, timing). If any of the previously described data is not clearly presented in the research article, the authors will be contacted for clarification. As recommended in the Joanna Briggs Institute Reviewer's Manual,19 the extraction form will be trialed on a small number of studies to ensure all relevant information is extracted. As the review is an iterative process, it will be further refined and continually updated.
In accordance with PRISMA-ScR guidance, the results of the search will be reported in full in the final scoping review report and presented in a PRISMA flow diagram.21 The results of the scoping review will be presented in a table, based on data extracted using the summary form developed for this review (Appendix III). The frequency of assessment tools and approaches used in studies will be reported. The characteristics of measurement instruments will be summarized using a table (Appendix IV) based on a previous scoping review of quality of life tools.22 The tabular summary will be elaborated in a narrative summary, addressing the objectives of the scoping review.
Consultation is not regarded as an optional step in more recent scoping review frameworks. Peters et al.19 recommend consultation with experts throughout the review process. A stakeholder meeting with local and national representatives such as policy makers, healthcare providers, researchers, and voluntary agencies representing older adults will be held to provide feedback on the findings and to develop the next steps in research and practice. We will disseminate our findings to local, national, and international stakeholders by presenting at relevant scientific meetings and publishing results in peer-reviewed journals.
Appendix I: Search strategy for Embase
- 1. (‘decision-making’/de OR ‘patient decision-making’/exp) AND (‘competence’/exp OR ‘informed consent’/exp OR ‘mental capacity’/exp OR ‘senescence’/exp OR ‘comprehension’/exp)
- 2. ((capacit∗ Or capabilit∗ OR abilit∗ OR competenc∗) NEAR/3 (decision∗)):ti,ab
- 3. #1 OR #2
- 4. ‘aged’/exp OR ‘aging’/exp OR ‘elderly care’/exp OR ‘geriatrics’/exp OR ‘geriatric patient’/exp
- 5. (aged OR elderly OR ‘senior citizen∗’ Or geriatric∗ OR ‘older patient∗’ OR ‘older people’ OR senesence):ti,ab
- 6. #4 OR #5
- 7. #3 AND #6
- 8. ‘psychologic assessment’/exp OR ‘clinical assessment tool’/exp OR ‘neuropsychological test’/exp OR ‘Mini Mental State Examination’/exp OR ‘Montreal cognitive assessment’/exp OR ‘clock drawing test’/exp OR ‘digit symbol substitution test’/exp
- 9. (‘MacArthur Competence Assessment Tool for Clinical Research’ OR ‘macarthur capacity assessment’ OR MacCAT-CR OR ‘Mini–Mental State Examination’ OR MMSE OR ‘Folstein test’ OR ‘Montreal cognitive assessment’ OR ‘Short Portable Mental Status examination’ OR ‘Short Portable Mental Status score’ OR SPMSQ OR CLOX OR ‘Executive Clock Drawing Task’ OR ‘clock drawing executive test’ OR ‘clock drawing test’ OR ‘digit symbol substitution test’ OR ‘digit symbol substitution task’ OR ‘Hopemont Capacity Assessment’ OR ‘Hopkins Competency Assessment’ Test OR HCAT):ti,ab
- 10. (cognitive∗ NEAR/3 assess∗):ti,ab
- 11. ((Evaluat∗ OR assess∗ OR capacit∗) NEAR/6 decision∗):ti,ab
- 12. #8 OR #9 OR #10 OR #11
- 13. #7 AND #12 AND [2000-2019]/py AND [english]/lim
Appendix II: Data extraction form
Appendix III: Summary of results form
Appendix IV: Characteristics of measures used to assess capacity
The current scoping review protocol will contribute toward a Doctor of Philosophy degree for RU.
1. Brémault-Phillips S, Pike A, Charles L, Roduta-Roberts M, Mitra A, Friesen S, et al. Facilitating implementation of the Decision-Making Capacity
Assessment (DMCA) model: senior leadership perspectives on the use of the National Implementation Research Network (NIRN) Model and frameworks. BMC Res Notes
2018; 11 (1):607.
2. Usher R, Stapleton T. Overview of the Assisted Decision-Making (Capacity) Act (2015): implications and opportunities for occupational therapy. Ir J Occup Ther
2018; 46 (2):130–140.
3. Barry C, Docherty M. Assessment of mental capacity and decision-making. Medicine
2018; 46 (7):405–410.
4. Hegde S, Ellajosyula R. Capacity issues and decision-making in dementia. Ann Indian Acad Neurol
2016; 19: ((Suppl 1)): S34–S39.
5. Charles L, Parmar J, Brémault-Phillips S, Dobbs B, Sacrey L, Sluggett B. Physician education on decision-making capacity
assessment current state and future directions. Can Fam Physician
2017; 63 (1):e21–e30.
6. Moye J, Marson DC. Assessment of decision-making capacity
in older adults
: An emerging area of practice and research. J Gerontol B Psychol Sci Soc Sci
2007; 62 (1):3–11.
7. United Nations Convention on the Rights of Persons with Disabilities. Geneva:United Nations; 2006.
8. Assisted Decision-making (Capacity) Act 2015 (Ireland).
9. Kelly BD. The Assisted Decision-Making (Capacity) Act 2015: what it is and why it matters. Ir J Med Sci
2017; 186 (2):351–356.
10. O’Donnell D, Ní Shé É, Davies C, Donnelly S, Cooney T, O’Coimin D, et al. Promoting assisted decision-making in acute care settings for care planning purposes: study protocol [version 1; referees: 2 approved]. HRB Open Research
2018; 1 (2):
11. Hotopf M. The assessment of mental capacity. Clin Med (Northfield Il)
2005; 5 (6):580–584.
12. Bigby C, Whiteside M, Douglas J. Providing support for decision-making to adults with intellectual disability: perspectives of family members and workers in disability support services. J Intellect Dev Disabil
2017; 1 (1):1–14.
13. Parmar J, Bremault-Phillips S, Charles L. The development and implementation of a decision-making capacity
. Assessment Model
2015; 18 (1):14.
14. Donnelly S, Begley E, O’Brien M. How are people with dementia involved in care-planning and decision-making? An Irish social work perspective. Dementia (London)
2018; 0 (0):1–19. 1471301218763180.
15. Jayes M, Palmer R, Enderby P. An exploration of mental capacity assessment
within acute hospital and intermediate care settings in England: a focus group study AU. Disabil Rehabil
2017; 39 (21):2148–2157.
16. Lamont S, Stewart C, Chiarella M. Capacity and consent: knowledge and practice of legal and healthcare standards. Nurs Ethics
2017; 26 (1):71–83.
17. Hinsliff-Smith K, Feakes R, Whitworth G, Seymour J, Moghaddam N, Dening T, et al. What do we know about the application of the Mental Capacity Act (2005) in healthcare practice regarding decision-making for frail and older people? A systematic literature review. Health Soc Care Community
2017; 25 (2):295–308.
18. Peters MDJ, Godfrey C, McInerney P, Baldini Soares C, Khalil H, Parker D. Aromataris E, Munn Z. Chapter 11: Scoping Reviews. Joanna Briggs Institute, Joanna Briggs Institute Reviewer's Manual [Internet]
19. Arksey H, O’Malley L. Scoping studies: towards a methodological framework AU - Arksey, Hilary. Int J Soc Res Methodol
2005; 8 (1):19–32.
20. Levac D, Colquhoun H, O’Brien KK. Scoping studies: advancing the methodology. Implement Sci
2010; 5 (1):69–77.
21. Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun H, Levac D, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Ann Intern Med
2018; 169 (7):467–473.
22. Yang F, Dawes P, Leroi I, Gannon B. Measurement tools of resource use and quality of life in clinical trials for dementia or cognitive impairment interventions: protocol for a scoping review. Syst Rev
2017; 6 (1):22.