Abstract
Background
Financial decision-making is complex and requires an in-depth assessment. In the presence of communication disorders, like aphasia, such assessments become challenging and require the use of a dedicated communication aid. No communication aid currently exists to support financial decision-making capacity (DMC) assessments for persons with aphasia (PWA).(1) We sought to establish the validity, reliability, and feasibility of a newly constructed communication aid desigqned for this purpose.
Methods
A mixed methods study was performed, divided into three phases. Phase one was aimed at capturing current understanding of DMC and communication by community-dwelling seniors, using focus groups. The second phase involved the development of a new communication aid to assist with the assessment of financial DMC for PWA. The third phase aimed to establish the psychometric properties of this new visual communication aid.
Results
The new communication aid is a 37-page, paper-based document, with 34 picture-based questions. Due to unforeseen difficulties in participant recruitment for evaluating the communication aid, a preliminary evaluation was performed on the results from eight participants. These indicated the communication aid had moderate inter-rater reliability (Gwet’s AC1 kappa of 0.51 [CI 0.4362 to 0.5816, p < .000]), good internal consistency (0.76), and was usable.
Conclusions
This newly developed communication aid is one of a kind, and provides essential support for PWA requiring a financial DMC assessment, which was not previously available. Preliminary evaluation of its psychometric properties is promising; however, further validation is required to confirm its validity and reliability in the proposed sample size.
Keywords: aphasia, decision-making capacity, communication aid, financial decision-making
INTRODUCTION
Decision-making capacity (DMC) refers to the “ability to understand information that is relevant to making a personal decision, and to appreciate the reasonably foreseeable consequences of that decision”.(2) Within Alberta, eight domains have been identified in which DMC can be assessed,(3) which fall under the categories of either personal and financial decision-making. Personal decision-making includes the domains of health care and treatment, accommodation, choice of associates, participation in social/leisure activities, participation in education/vocational training, employment, and legal decisions. Financial decision-making pertains solely to decisions about financial matters.(4)
The complexity of any DMC assessment (DMCA) process is influenced by many factors, including the specific domain(s) being assessed. Given the current absence of literature on the topic, it is unclear if the assessment of certain domains is more complex than others. Rather, factors such as the decision in question, context, and patient and assessor characteristics all likely have a greater influence on DMCA complexity.
Most of the current research in DMC has been within health-care DMC, predominantly focusing on patient consent,(5–8) with considerably less research in other, equally important domains, like financial decision-making. This is concerning, given the aging population and that aging has been associated with an increased risk of developing impairment in DMC and, in particular, financial DMC.(9) The incidence of communication disorders, like aphasia, also increases with age, which also impacts significantly on DMC and DMCAs.(10)
Due to lack of confidence, inexperience and/or minimal training in this area, many physicians are uncomfortable performing any DMCA, and especially in the setting of any communication barrier, present in all persons with aphasia (PWA).(11) Therefore, the assessment process becomes either extremely difficult or impossible, and is often not performed.(12) This is particularly the case for financial DMCAs, which have, arguably, higher stakes.
Communication aids should be used to support all DMCAs in PWA. However, only one communication aid exists, which is designed only to support assessments of personal DMC for accommodation decisions. No communication aids exists to support DMCAs for either legal and/or financial DMC.(1) Therefore, the primary objectives for this study were to develop and establish the psychometric properties of a new communication aid to assist with financial DMCAs for PWA.
METHODS
A mixed-methods, quasi-experimental study design was used, which is a study design commonly used for validation studies such as this. The study was divided into three phases, and was conducted over four years. Due to difficulties in participant recruitment and extensive restrictions on clinical research due to the prolonged COVID-19 epidemic, the study is still ongoing. Due to importance of this research, this paper presents our preliminary results from the initial evaluation of the new communication aid.
Phase One
The first phase involved exploring community-dwelling older adults’ (65 years or older) current understanding of general and specific (financial and legal) DMC, and about communication and communication disorders, using focus groups the number of which was determine by data theme saturation. Focus group participants were recruited from local community centres and two of the local hospital volunteer programs (University of Alberta (UAH) and Glenrose Rehabilitation Hospital (GRH)) using a purposeful sampling technique. Focus group discussions were recorded, and transcribed by an independent party, with personally identifying information being removed during this process. Transcribed data were thematically analyzed using NVIVO software (Version 12) (QSR International, Burlington, MA). The generated themes were used to inform and guide the development of the new visual communication capacity aid.
Phase Two
The second phase involved the development of a new communication aid. During this time, it was quickly recognized that it would be too difficult to develop a single communication aid that could adequately cover the assessment of both financial and legal domains of decision-making. Therefore, the research question was changed to develop a communication aid to support financial DMCAs only. Due to the change in study protocol, a new ethics application was submitted, with granting of approval being delayed, resulting in delaying the study.
Content for the communication aid was obtained using a triangulation of data sources, which included focus group feedback, purchased images, speech-language pathologist (SLP) feedback, and content from the Capacity Interview Worksheets.(3) Common themes from the focus group feedback where identified and transformed into pictographic representation for each question in the communication aid. Potential copyright issues were discussed with a copyright lawyer. Each draft of the communication aid was presented to the research team and revised accordingly until consensus was reached on the appearance and content of the communication aid. Please refer to Appendix A for a copy of the communication aid.
Phase Three
The final phase of the study involved evaluating the validity, reliability, and usability of the communication aid. Content validity was assessed through the presentation of the communication aid to a group of Designated Capacity Assessors (DCAs) who compared its content with that of the Capacity Interview Worksheet to ensure that the communication aid was representative. DCAs are “regulated health-care professionals who have been appointed by the Government of Alberta to complete capacity interviews and make recommendations to the Office of the Public Guardian/Trustee”.(2) Face validity was determined through the presentation of the communication aid to a group of DCAs external to the study.
Consensus agreement on the validity of the communication aid was evaluated using a predetermined modified Delphi protocol. An initial round of Delphi Consensus was conducted from June to August 2017 using a group of seven DMC experts. Each Delphi group member was sent an electronic package, which contained a cover letter explaining the study and request for feedback, a copy of the visual communication aid, and an evaluation questionnaire used to collect feedback about the aid. Due to a high dropout rate during the second iteration, a second Delphi group was formed, comprising of 15 different DMC experts.
Reliability was evaluated from the use of the communication aid within financial DMCAs for PWA. The proposed sample size was 30, which was based on prior validation study literature,(13) as formal power and sample size calculations were not possible due to the absence of prior literature. The target population for the DMCAs were hospitalized patients at the Royal Alexandra Hospital (RAH) (one of two Acute Care Teaching Hospitals in Edmonton, Canada) who were 65 years or older and had been diagnosed with post-stroke aphasia). Each participant underwent two financial DMCAs using the communication aid, with each DMCA done on different days and by different assessors from the research team (DCA or geriatric physician). All assessors had received additional training in the use of ‘Supported Conversation for Adults with Aphasia’ (SCA),(14) which is recommended for all individuals working with PWA. DMCA results were kept confidential from the care team.
Feasibility was determined from the feedback received from assessors, using a specifically designed ‘Visual Communication Aid User-Experience Questionnaire”. This feedback would then be used to modify the aid (and training), if necessary.
Data analysis involved initial data exploration, followed by the generation of frequency tables and bar charts for each question. Reliability was determined from the DMCA results. Inter-rater agreement was calculated using Gwet’s AC1 kappa. Assessment of test/retest reliability was not possible as each assessor only used the communication aid once for each participant; instead, an indirect evaluation of test/retest reliability was performed, using the communication aid by the same assessor for multiple patients. The Cronbach alpha was chosen to provide an assessment of the average covariance.
Ethical approval was obtained both prior to study initiation, and after the research objective of the communication aid was changed.
RESULTS
Three focus groups were held over nine months (April 2015 to January 2016). The results revealed a lack of understanding about general, and specific, DMC for financial and legal matters, but a clear understanding about communication, communication disorders, and how communication impairments can impact DMC and DMCA. Feedback about the communication aid indicated a need for picture consistency, the importance of color, and subjectivity in picture interpretation.
The new communication aid is a 37-page paper-based document comprised of 34 picture-based questions (containing black-and-white pictures), along with a set of user instructions that details the additional equipment required, and an appendix listing the image sources (Appendix A). Although the initial plan had been to use color images, due to concerns about degradation and reproducibility of images, black-and-white images were used instead. In addition, a unique ‘Aphasia Friendly Participant Consent Form’ was also developed, using a similar format (Appendix B). This is a 22-page paper consent form that covers all the necessary aspects required for obtaining consent, using a variety of picture-based questions.
Content and face validity of the communication aid was established using Delphi Consensus with a group of content-matter experts. An initial Delphi protocol was conducted from June to August 2017 with a group of seven DMC experts. Due to high dropout (n=5), a second Delphi group was formed in August 2018, comprising 15 DMC experts. These included three physicians (two Care of the Elderly, Geriatric Psychiatry), a lawyer, and 11 DCAs from a variety of backgrounds. The Delphi protocol was conducted over three months electronically, through three iterations, with 15 participants in the first iteration, 12 in the second, and 10 in the third. By the end of the third iteration, 90% consensus was reached, thus confirming the content and face validity of the communication aid.
During the recruitment process for the DMCAs, it quickly became clear that the pool of potentially eligible participants was extremely small, and so several changes were made to increase the number of available eligible participants. Recruitment was expanded to include the stroke and geriatric rehabilitation units at the Glenrose Rehabilitation Hospital, and age of inclusion lowered to 18 years or older. It was also identified that many SLPs at the RAH do not routinely use the Western Aphasia Battery (WAB) for language assessments, but instead use a variety of other screening tools (e.g., the BTNV), and so the aphasia diagnostic criteria was broadened to requiring only a formal SLP assessment to confirm an aphasia diagnosis.
Over one year, only eight participants were recruited despite the changes described above. A preliminary analysis of the results from these eight participants is described below.
Three raters were involved in conducting the DMCAs (two DCAs and one physician). Rater A (MV) assessed eight patients, Rater B (FC) assessed six, and Rater C (KP) assessed two. All patients had their two assessments conducted on different days. The mean duration between assessments was 14 days (SD 24.3, 1–66 days). Most patients (n=7) had the second assessment done within one week.
In total, 544 observations were made: 272 by Rater A, 204 by Rater B, and 68 by Rater C. The communication aid was used in all DMCAs (n=16). All attempted DMCAs were completed. All questions were answered by all participants. The assessment results for each question across all participants are shown in Figures 1–68 (in Appendix C), and in Table D1 (of Appendix D).
Inter-rater Assessment
Inter-rater reliability was assessed within two groups, according to the number of patients seen. The first group (Rater A vs. Rater B) included six patients, while the second group (Rater A vs. Rater C) included two. Due to the extremely small sample size of the second group (Rater A vs. C), the significance of the results obtained between these latter two raters was difficult to interpret.
Group One: Rater A vs. Rater B
Group one had six participants. Each participant underwent two assessments, one by Rater A and one by Rater B, resulting in 12 assessments and 408 observations (see Tables E1 to E6 of Appendix E). Gwet’s kappa was 0.5089 (CI 0.436–0.581, p < .000) (see Table F1 in Appendix F).
Group Two: Rater A vs. Rater C
Group two had two participants, resulting in four assessments and a total of 136 observations (see Tables E7 & E8 in Appendix E). Gwen’s kappa of 0.3719 (CI 0.248–0.5010, p < .00) (see Table F1 of Appendix F).
Internal Consistency
Cronbach alpha was 0.76, with an (overall) Cronbach alpha greater than 0.7 (0.7283). Although several items had small item-rest and item-test correlations, given the large number of items evaluated (n=34), these values support the communication aid having overall quite good internal consistency. The agreement between Rater A and Rater B revealed a Gwet’s AC kappa of 0.51 (CI 0.4362 to 0.5816, p < .000), indicating a moderate inter-rater agreement. A slightly lower kappa was found between Rater A and Rater C, but given the sample size, interpretation is not possible. These results are promising, especially given the limited sample size and the diversity of possible responses.
Usability
Feedback from two out of three assessors reported that the communication aid was simple to use and incorporate into the assessment process, and that the SCA training provided was sufficient. The only negative feedback reported was concern that PWA may have difficulties understanding the last question.
DISCUSSION
Financial DMC is a complex process, and its assessment can be challenging, especially for PWA. The absence of prior literature in this area combined with the lack of communication aids to support such assessments justifies the importance of this study and this new communication aid.
Although the original objective had been to develop a communication aid to support DMCAs for both legal and financial matters, the length and complexity of such a communication aid would make it impractical for use. Therefore, this new communication aid was designed to support financial DMCAs only, and is the first of its type. Due to an insufficient number of eligible participants being available to meet our intended sample size, a preliminary evaluation was done on the results from the eight participants recruited, the results of which are promising and justify the need to continue the study to fully validate the communication aid.
The results obtained from the focus groups identified an overall lack of understanding amongst older adults about DMC and, specifically, legal and financial DMC. This supports the need for public education along with future research in this area. Interestingly, they appear to have a good understanding about communication and its disorders, and of communication methods used to inform communication aid development.
The other new product from this study is the “Aphasia Friendly Participant Consent Form” (Appendix B). As this consent form was not the study focus, it requires formal evaluation, which is a future goal of the authors following completion of this study.
There are a number of significant limitations to this study. The inclusion criteria and sensitive nature surrounding DMCA resulted in an extremely limited pool of potential participants, which persisted despite revising the recruitment location and the inclusion criteria, resulting in not meeting the intended sample size. The other major limitation was the need to change the study protocol after study initiation. Although not ideal, the challenges encountered were both unforeseeable and unpredictable, given the lack of prior studies, and the changes were deemed necessary to allow continuation of the research. While modifications were made to limit the impact from these changes, they will have likely impacted on the accuracy and interpretation of the results.
Other limitations include the diversity observed in the results from these DMCAs, and in the consistency of the answers provided. Possible explanations for this are the timing of the capacity assessment, fluctuation within the participant’s aphasia, fatigue, and medications. Ideally, the assessments would have been done at the same time on different days; this was not possible due to restrictions from patient and DMCA assessor commitments and availability.
The use of a mixed methods design allows for the combination of qualitative and quantitative research within a single study, which is required for validation of a new instrument. However, this can lead to the development of complex and resource intense studies, such as ours.
Additional limitations include the focus group participants, who may not be representative of community-dwelling older adults, thus limiting the generalizability of the results.
CONCLUSION
The assessment of financial DMC in PWA is challenging, and there are no communication aids to support such assessments. Therefore, through this study, we have developed a communication aid to support DMCAs in PWA. Due to a number of significant challenges encountered during the study, we have only been able to recruit eight participants for the study. The preliminary results from this small sample size revealed the communication aid to be possibly reliable (with moderate inter-rater reliability), valid, and usable. However, further evaluation is required once the sample size is reached, to fully establish the psychometric properties of the communication aid.
ACKNOWLEDGEMENTS
I would like to acknowledge and thank the following individuals, who formed the research team: Michelle Valpreda, Andrew Mitchell, and Kristine Portluck.
Appendix A. Visual Communication Capacity AID
INTRODUCTION
INSTRUCTIONS FOR USING THE VISUAL COMMUNICATION CAPACITY AID
This visual communication capacity aid has been designed and validated to assist with the evaluation of financial decision making capacity specifically for individuals with post stroke (expressive) aphasia. It should not be used to assist with capacity assessments for other domains or individuals without aphasia. The target population in which this communication aid has been validated are individuals over the age of 65 who have been diagnosed with post-stroke expressive aphasia and are native english speakers. Using this communication aid in other populations or outside its recommended use will limit the accuracy (and may invalidate) the results obtained, in addition to violating individual copyright use of the instrument.
All potential users of this communication capacity aid should have the necessary training required to conduct capacity assessments either by nature of their qualifications (physicians, surgeons and psychologists) or have undergo specialized training to become a designated capacity assessor (DCA). In addition, all users are required to have undergone training in the use of Supported Conversation for Adults with Aphasia’ which is available online at http://www.aphasia.ca/home-page/health-care-professionals/knowledge-exchange/ and provides information regarding the appropriate use of communication techniques to use when working with aphasic individuals. There are no recommended time constraints for using the visual communication aid, as the amount of time required will depend on individual needs.
An appendix is located at the end of the communication aid. The appendix includes an answer sheet document which should be used in conjunction with the communication aid for answering the questions, a list of the materials and equipment required for using the visual communication aid in the manner intended, a reference credit list for the purchased images that have been incorporated into the aid and a reference list of local and national charitable organizations for use with question 18. All potential users are required to obtain a collection of their financial institution logos for use with the communication aid specifically for question 5.
Given the comprehensive nature of the communication capacity aid, only small pictures could be accommodated within its scope. Should visual access be an issue, then it is recommended that larger versions of the pictures included in the aid be used for the assessment.
The communication aid is free to use by registered professionals who are (licensed) to perform capacity assessments within the population for which it has been validated. The communication aid can be obtained at no extra cost by emailing the author (contact details included in the appendix).
Appendix B. Aphasia Friendly Participant Consent Form
Appendix C. Participant responses from the decision-making capacity assessment
Figure 1. Participant answers to question 1 between raters A & C.
The stacked bar chart shows each participant response to question 1, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 2. Participant answers to question 1 between raters A & B.
The stacked bar chart shows each participant response to question 1, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 3. Participant answers to question 2 between raters A & C.
The stacked bar chart shows each participant response to question 2, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 4. Participant answers to question 2 between raters A & B.
The stacked bar chart shows each participant response to question 2, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 5. Participant answers to question 3 between raters A & C.
The stacked bar chart shows each participant response to question 3, obtained during the decision-making capacity assessments done with the communication aid by raters A and C. Abbreviations: Pp – pension plan; Da – disability allowance; BkS – bank savings.
Figure 6. Participant answers to question 3 between raters A & B.
The stacked bar chart shows each participant response to question 3, obtained during the decision-making capacity assessments done with the communication aid by raters A and B. Abbreviations: Pp – pension plan; Da – disability allowance; Wk – work; BkS – bank savings.
Figure 7. Participant answers to question 4 between raters A & C.
The stacked bar chart shows each participant response to question 4, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 8. Participant answers to question 4 between raters A & B.
The stacked bar chart shows each participant response to question 4, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 9. Participant answers to question 5 between raters A & C.
The stacked bar chart shows each participant response to question 5, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 10. Participant answers to question 5 between raters A & B.
The stacked bar chart shows each participant response to question 5, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 11. Participant answers to question 6 between raters A & C.
The stacked bar chart shows each participant response to question 6, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 12. Participant answers to question 6 between raters A & B.
The stacked bar chart shows each participant response to question 6, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 13. Participant answers to question 7 between raters 1 & 2.
The stacked bar chart shows each participant response to question 7, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 14. Participant answers to question 7 between raters A & B.
The stacked bar chart shows each participant response to question 7, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 15. Participant answers to question 8 between raters A & C.
The stacked bar chart shows each participant response to question 8, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 16. Participant answers to question 8 between raters A & B.
The stacked bar chart shows each participant response to question 8, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 17. Participant answers to question 9 between raters A & C.
The stacked bar chart shows each participant response to question 9, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 18. Participant answers to question 9 between raters A & B.
The stacked bar chart shows each participant response to question 9, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 19. Participant answers to question 10 between raters A & C.
The stacked bar chart shows each participant response to question 10, obtained during the decision-making capacity assessments done with the communication aid by raters A and C. Abbreviations: RRSP – registered retirement savings plan.
Figure 20. Participant answers to question 10 between raters A & B.
The stacked bar chart shows each participant response to question 10, obtained during the decision-making capacity assessments done with the communication aid by raters A and B. Abbreviations: RRSP – registered retirement savings plan; Sk – stocks; MF – mutual funds; RIF – retirement income fund; TFSA – tax free savings account.
Figure 21. Participant answers to question 11 between raters A & C.
The stacked bar chart shows each participant response to question 8, obtained during the decision-making capacity assessments done with the communication aid by raters A and C. Abbreviations: wt - water; ht - heat; ph - phone; el - electricity.
Figure 22. Participant answers to question 11 between raters A & B.
The stacked bar chart shows each participant response to question 11, obtained during the decision-making capacity assessments done with the communication aid by raters A and B. Abbreviations: wt -water; ht - heat, ph – phone/TV, el - electricity, it – internet; rent – rent/mortgage.
Figure 23. Participant answers to question 12 between raters A & C.
The stacked bar chart shows each participant response to question 12, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 24. Participant answers to question 12 between raters A & B.
The stacked bar chart shows each participant response to question 12, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 25. Participant answers to question 13 between raters A & C.
The stacked bar chart shows each participant response to question 13, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 26. Participant answers to question 13 between raters A & B.
The stacked bar chart shows each participant response to question 13, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 27. Participant answers to question 14 between raters A & C.
The stacked bar chart shows each participant response to question 14, obtained during the decision-making capacity assessments done with the communication aid by raters A and C. Abbreviations: Wt - water; ht - heat, ph - phone, el - electricity.
Figure 28. Participant answers to question 14 between raters A & B.
The stacked bar chart shows each participant response to question 8, obtained during the decision-making capacity assessments done with the communication aid by raters A and B. Abbreviations: ht -heat; el – electricity; ev – eviction.
Figure 29. Participant answers to question 15 between raters A & C.
The stacked bar chart shows each participant response to question 15, obtained during the decision-making capacity assessments done with the communication aid by raters A and C. Abbreviations: Bk – bank; Cq – cheque.
Figure 30. Participant answers to question 15 between raters A & B.
The stacked bar chart shows each participant response to question 15, obtained during the decision-making capacity assessments done with the communication aid by raters A and B. Abbreviations: Bk – bank; Cq – cheque; Cc - debit/credit card; Ip - In person.
Figure 31. Participant answers to question 16 between raters A & C.
The stacked bar chart shows each participant response to question 16, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 32. Participant answers to question 16 between raters A & B.
The stacked bar chart shows each participant response to question 16, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 33. Participant answers to question 17 between raters A & C.
The stacked bar chart shows each participant response to question 17, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 34. Participant answers to question 17 between raters A & B.
The stacked bar chart shows each participant response to question 17, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 35. Participant answers to question 18 between raters A & C.
The stacked bar chart shows each participant response to question 18, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 36. Participant answers to question 18 between raters A & B.
The stacked bar chart shows each participant response to question 18, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 37. Participant answers to question 19 between raters A & C.
The stacked bar chart shows each participant response to question 19, obtained during the decision-making capacity assessments done with the communication aid by raters A and C. Abbreviations: Act – accountant.
Figure 38. Participant answers to question 19 between raters A & B.
The stacked bar chart shows each participant response to question 19, obtained during the decision-making capacity assessments done with the communication aid by raters A and B. Abbreviations: Cy – charity; Bk – bank; Act – accountant.
Figure 39. Participant answers to question 20 between raters A & C.
The stacked bar chart shows each participant response to question 20, obtained during the decision-making capacity assessments done with the communication aid by raters A and C. Abbreviations: ST – Stollery children’s hospital foundation; RC – Red Cross; Cy – charity.
Figure 40. Participant answers to question 20 between raters A & B.
The stacked bar chart shows each participant response to question 20, obtained during the decision-making capacity assessments done with the communication aid by raters A and B. Abbreviations: EHS – Edmonton Humane Society; WS – Women’s shelter; FB – foodbank; BB – Big Brother Big Sisters of Edmonton and area; H&S – Heart & Stroke Foundation; RC – Red Cross.
Figure 41. Participant answers to question 21 between raters A & C.
The stacked bar chart shows each participant response to question 21, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 42. Participant answers to question 21 between raters A & B.
The stacked bar chart shows each participant response to question 21, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 43. Participant answers to question 22 between raters A & C.
The stacked bar chart shows each participant response to question 22, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 44. Participant answers to question 22 between raters A & B.
The stacked bar chart shows each participant response to question 22, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 45. Participant answers to question 23 between raters A & C.
The stacked bar chart shows each participant response to question 23, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 46. Participant answers to question 23 between raters A & B.
The stacked bar chart shows each participant response to question 23, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 47. Participant answers to question 24 between raters A & C.
The stacked bar chart shows each participant response to question 24, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 48. Participant answers to question 24 between raters A & B.
The stacked bar chart shows each participant response to question 24, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 49. Participant answers to question 25 between raters A & C.
The stacked bar chart shows each participant response to question 25, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 50. Participant answers to question 25 between raters A & B.
The stacked bar chart shows each participant response to question 25, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 51. Participant answers to question 26 between raters A & C.
The stacked bar chart shows each participant response to question 26, obtained during the decision-making capacity assessments done with the communication aid by raters A and C. Abbreviations: Cq – cheque.
Figure 52. Participant answers to question 26 between raters A & B.
The stacked bar chart shows each participant response to question 26, obtained during the decision-making capacity assessments done with the communication aid by raters A and B. Abbreviations: Bt – bank teller; Cq – cheque; Cp – computer.
Figure 53. Participant answers to question 27 between raters A & C.
The stacked bar chart shows each participant response to question 27, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 54. Participant answers to question 27 between raters A & B.
The stacked bar chart shows each participant response to question 27, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 55. Participant answers to question 28 between raters A & C.
The stacked bar chart shows each participant response to question 28, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 56. Participant answers to question 28 between raters A & B.
The stacked bar chart shows each participant response to question 28, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 57. Participant answers to question 29 between raters A & C.
The stacked bar chart shows each participant response to question 29, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 58. Participant answers to question 29 between raters A & B.
The stacked bar chart shows each participant response to question 29, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 59. Participant answers to question 30 between raters A & C.
The stacked bar chart shows each participant response to question 30, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 60. Participant answers to question 30 between raters A & B.
The stacked bar chart shows each participant response to question 30, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 61. Participant answers to question 31 between raters A & C.
The stacked bar chart shows each participant response to question 31, obtained during the decision-making capacity assessments done with the communication aid by raters A and C. Abbreviations: Fm – family; Pl – police; Bk – bank.
Figure 62. Participant answers to question 31 between raters A & B.
The stacked bar chart shows each participant response to question 31, obtained during the decision-making capacity assessments done with the communication aid by raters A and B. Abbreviations: Fm – family; Pl – police; Bk – bank.
Figure 63. Participant answers to question 32 between raters A & C.
The stacked bar chart shows each participant response to question 31, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 64. Participant answers to question 32 between raters A & B.
The stacked bar chart shows each participant response to question 32, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 65. Participant answers to question 33 between raters A & C.
The stacked bar chart shows each participant response to question 33, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 66. Participant answers to question 33 between raters A & B.
The stacked bar chart shows each participant response to question 33, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Figure 67. Participant answers to question 34 between raters A & C.
The stacked bar chart shows each participant response to question 34, obtained during the decision-making capacity assessments done with the communication aid by raters A and C.
Figure 68. Participant answers to question 34 between raters A & B.
The stacked bar chart shows each participant response to question 34, obtained during the decision-making capacity assessments done with the communication aid by raters A and B.
Appendix D. Tables showing the outcomes from DMCA
Table 1.
Outcomes from the decision-making capacity assessments by patient
| PATIENT | RATER A | RATER B | RATER C |
|---|---|---|---|
| 1 | Lacks financial decision-making capacity | Lacks financial decision-making capacity | |
| 2 | Lacks financial decision-making capacity | Lacks financial decision-making capacity | |
| 3 | Lacks financial decision-making capacity | Lacks financial decision-making capacity | |
| 4 | Lacks financial decision-making capacity | Lacks financial decision-making capacity | |
| 5 | Lacks financial decision-making capacity | Lacks financial decision-making capacity | |
| 6 | Has financial decision-making capacity | Has financial decision-making capacity | |
| 7 | Lacks financial decision-making capacity | Lacks financial decision-making capacity | |
| 8 | Lacks financial decision-making capacity | Lacks financial decision-making capacity |
Appendix E. List of tables showing participant responses to each question
Table 2.
Participant 1 responses
| QUESTION | RATER A | RATER C |
|---|---|---|
| 1 | Yes | Yes |
| 2 | Yes | Yes |
| 3 | Disability allowance | Disability allowance |
| 4 | Some | Some |
| 5 | Unclear | Unclear |
| 6 | Family | Family |
| 7 | Monthly | Monthly |
| 8 | Savings | Savings |
| 9 | Apartment, house | No |
| 10 | RRSP | Don’t know |
| 11 | Yes – water & heat &phone & rent & electricity | Yes - tax |
| 12 | More than $50 | More than $50 |
| 13 | No | Unclear |
| 14 | Turn off water, heat, phone, rent, electricity | Nothing |
| 15 | Bank | Cheque |
| 16 | Yes | Yes |
| 17 | Yes | Yes |
| 18 | <$40 | Nothing |
| 19 | Yes - family | Yes - family |
| 20 | Yes – family & charity not listed | Yes - Red Cross |
| 21 | More than $100 | More than $100 |
| 22 | Family | You/self |
| 23 | Unclear | Debt - owe money |
| 24 | Family | You/self |
| 25 | Family | No one |
| 26 | ATM | ATM |
| 27 | Filing cabinet | Filing cabinet |
| 28 | Filing cabinet | Unclear |
| 29 | Family | Family |
| 30 | Unclear | Unclear |
| 31 | Family | Do nothing |
| 32 | Safe | Unclear |
| 33 | Unclear | Unclear |
| 34 | Unclear | Unclear |
Table 3.
Participant 2 responses
| QUESTION | RATER A | RATER C |
|---|---|---|
| 1 | Yes | Yes - ok |
| 2 | Yes | No |
| 3 | Pension & bank saving | Don’t know |
| 4 | Yes - Lots | Don’t know |
| 5 | CIBC | No |
| 6 | Family | Unclear |
| 7 | Weekly | Monthly |
| 8 | Savings | None |
| 9 | Yes – House & car | Nothing |
| 10 | Bond & RRSP | No |
| 11 | Unclear | Unclear |
| 12 | More than 50 | No |
| 13 | Yes | No |
| 14 | Heat & electricity switched off | Water turned off |
| 15 | Bank | Unclear |
| 16 | No | No |
| 17 | No | No |
| 18 | More than $3000 | Unclear |
| 19 | Accountant | No |
| 20 | Yes - Stollery | No |
| 21 | Less than $40 | Unclear |
| 22 | Accountant | You/self |
| 23 | Debt - owe money | Unclear |
| 24 | OPGT | No one |
| 25 | OPGT | OPGT |
| 26 | Cheque | Unclear |
| 27 | No where | No where |
| 28 | File cabinet | No where |
| 29 | Family | Family |
| 30 | Nobody | Nobody |
| 31 | Police | Unclear |
| 32 | Safe | Unclear |
| 33 | Unclear | Unclear |
| 34 | Legal document naming someone to make financial decisions for you | Unclear |
Table 4.
Participant 3 responses
| QUESTION | RATER A | RATER B |
|---|---|---|
| 1 | Yes | Yes |
| 2 | Yes | Yes |
| 3 | Pension | Pension/work |
| 4 | Yes - some | Yes - some |
| 5 | BMO | BMO |
| 6 | Yes - talk to brother | Yes - then talk with brother |
| 7 | Monthly | Monthly |
| 8 | Both | Both |
| 9 | House | House |
| 10 | Yes - RRSP | Yes - unsure where |
| 11 | Yes – water & heating & electricity & phone & internet & taxes | Yes – water & heating & phone & internet |
| 12 | Unclear | More than $50 |
| 13 | Yes | Yes |
| 14 | Things get switched off, eviction | Eviction |
| 15 | Unclear | Bank |
| 16 | Yes | No |
| 17 | No | Yes |
| 18 | Less than $3000 | Less than 3000 |
| 19 | Yes - charity | Yes - family & charity |
| 20 | Yes – Woman’s shelter, food bank | Yes – Woman’s charity in Edmonton |
| 21 | More than $100 | More than $100 |
| 22 | Family | Family |
| 23 | Debt, all options | Debt |
| 24 | You | You |
| 25 | Family | Family |
| 26 | Cheque & bank, ATM | Cheque & computer |
| 27 | Filing cabinet | Filing cabinet |
| 28 | File cabinet | Safe/filing cabinet |
| 29 | Family | Bank & family |
| 30 | Family - lots | Family - lots ($1200/month) |
| 31 | Everyone whoever | Police & family |
| 32 | Bank & safe | Bank & safe |
| 33 | Both | Legal document naming someone to make financial decisions |
| 34 | Person appointed by courts to make financial decisions | Legal document naming someone to make financial decisions |
Table 5.
Participant 4 responses
| QUESTION | RATER A | RATER B |
|---|---|---|
| 1 | Yes | Yes |
| 2 | Yes | Yes |
| 3 | Pension plan | Pension plan |
| 4 | None | Yes - lots |
| 5 | Unclear | Unclear |
| 6 | Yes | Yes |
| 7 | Weekly | Weekly |
| 8 | Chequing | Not included in list/I don’t know (hard to determine specific answer) |
| 9 | House, car | Unclear |
| 10 | No | Unclear |
| 11 | No | No |
| 12 | More than $50 | Unclear |
| 13 | No | No |
| 14 | Unclear | Unclear |
| 15 | Bank | Unclear |
| 16 | No | No |
| 17 | No | Yes |
| 18 | More than $3000 | More than $3000 |
| 19 | No | No |
| 20 | No | Yes - none of the answers |
| 21 | None | Unclear |
| 22 | You | You |
| 23 | Debt | Unclear |
| 24 | Family | You |
| 25 | Unclear | No one |
| 26 | Unclear | Unclear |
| 27 | Desk | Unclear |
| 28 | No method | Unclear |
| 29 | No one | None |
| 30 | No | No |
| 31 | No | Unclear |
| 32 | Unclear | Unclear |
| 33 | Unclear | Someone to make personal decisions |
| 34 | Unclear | Unclear |
Table 6.
Participant 5 responses
| QUESTION | RATER A | RATER B |
|---|---|---|
| 1 | Yes | Yes |
| 2 | No | Yes |
| 3 | Pension plan | Pension plan |
| 4 | Yes - some | Yes - lots |
| 5 | RBC | None of these answers |
| 6 | Yes - spouse & myself | Yes - family |
| 7 | Monthly | Monthly |
| 8 | Both | Both |
| 9 | Car | Car |
| 10 | Yes – bonds & stocks & mutual | Yes – bonds & stocks & real estate |
| 11 | Yes – electricity & phone & TV & internet | Yes –electricity & phone & taxes |
| 12 | More than $50 | Unclear |
| 13 | Yes | Yes |
| 14 | Electricity switched off | Electricity switched off |
| 15 | Bank & cheque & in person & card | Bank & cheque |
| 16 | Yes | No |
| 17 | Yes | Yes |
| 18 | Yes | Less than $3000 |
| 19 | Yes - family | Yes – charity & bank & accountant |
| 20 | Yes - all | Yes - all |
| 21 | More than 100 | Less than $40 |
| 22 | You | You |
| 23 | Nothing | Unclear |
| 24 | You | You |
| 25 | You, spouse | You |
| 26 | Bank teller & ATM & cheque | Bank teller & cheque & computer |
| 27 | Safe | None of these answers |
| 28 | Safe | Safe |
| 29 | Bank | Family, bank |
| 30 | Unclear | Unclear |
| 31 | Call bank & family | Call bank |
| 32 | Safe & bank | Safe & bank |
| 33 | Legal document - financial decisions | Unclear |
| 34 | Unclear | Person who makes financial decisions |
Table 7.
Participant 6 responses
| QUESTION | RATER A | RATER B |
|---|---|---|
| 1 | Yes | Yes |
| 2 | Yes | Yes |
| 3 | Pension & disability & work & savings | Pension & disability & work & bank savings |
| 4 | Yes - some | Yes - some |
| 5 | CIBC | CIBC |
| 6 | Yes | Yes |
| 7 | Monthly | Monthly |
| 8 | Both | Both |
| 9 | House, car | Car, house |
| 10 | Yes - MF | RIF, TFSA & Mutual funds |
| 11 | Water & heating & electricity & phone & tax | Water & heating & electricity & phone & tax |
| 12 | More than $50 | More than $50 |
| 13 | Yes | Yes |
| 14 | Heat & water & electricity switched off | ? Eviction |
| 15 | Bank & credit card & ATM | Bank & credit card |
| 16 | No | No |
| 17 | Yes | Yes |
| 18 | More than $3000 | More than $3000 |
| 19 | Yes – Charity | Yes charity |
| 20 | Edmonton humane society | Edmonton humane society |
| 21 | More than $100 | Less than $40 |
| 22 | Self | Self |
| 23 | Debt & food & bills | Debt & food & bills |
| 24 | You | You |
| 25 | Family | Family |
| 26 | ATM & bank teller | ATM & bank teller & cheque |
| 27 | Filing cabinet | Filing cabinet |
| 28 | File cabinet | No method |
| 29 | Family | family |
| 30 | No | No |
| 31 | Call bank & police & tell family | Call bank & police & tell family |
| 32 | Safe | Bank |
| 33 | Legal document | Legal document |
| 34 | Person appointed by courts to make financial decisions for you | Legal document |
Table 8.
Participant 7 responses
| QUESTION | RATER A | RATER V |
|---|---|---|
| 1 | Yes | Yes |
| 2 | Yes | Yes |
| 3 | Pension & disability allowance | Pension & work |
| 4 | Yes - some | Yes - some |
| 5 | CIBC | BMO |
| 6 | Yes | Yes |
| 7 | Unclear | Monthly |
| 8 | Both | Both |
| 9 | Nothing | House (husband had a car) |
| 10 | None | None |
| 11 | Electricity & phone & internet & rent | Water & heating |
| 12 | Unclear | More than $50 |
| 13 | Yes | Y |
| 14 | Loan & phone & personal care | Unable - ?eviction |
| 15 | Bank & ATM | Bank |
| 16 | No | No |
| 17 | No | Yes |
| 18 | Not have property tax | More than $3000 |
| 19 | No | Yes |
| 20 | No | Yes – Woman’s charity |
| 21 | Unclear | More than $100 |
| 22 | HM block | Family |
| 23 | Unclear/not sure | Debt |
| 24 | Self | You |
| 25 | Self | Family |
| 26 | Bank & ATM | Cheque & computer |
| 27 | Box & nowhere | Filing cabinet |
| 28 | Nowhere | Safe & filing cabinet |
| 29 | None | Bank & family |
| 30 | No | Family - lots |
| 31 | Bank & police | Police & family |
| 32 | Nothing | Bank & safe |
| 33 | Someone who will make person decisions for your | Legal document naming someone make financial decisions |
| 34 | Legal document naming someone to make financial decisions for you | Legal document naming someone make financial decisions |
Table 9.
Participant 8 responses
| QUESTION | RATE A | RATER B |
|---|---|---|
| 1 | Yes | Yes |
| 2 | Yes | Yes |
| 3 | Pension & disability allowance & bank savings | Pension & disability allowance & bank savings |
| 4 | Yes - some | Yes - lots |
| 5 | ATB & BMO | BMO & ATB & RBC |
| 6 | Yes | Yes |
| 7 | Weekly & sometimes monthly | Weekly |
| 8 | Both | Both |
| 9 | Car | Car |
| 10 | RRSP, MF, Bonds | RRSP & mutual funds |
| 11 | Phone & electricity & heating | Phone |
| 12 | More than $50 | More than $50 |
| 13 | Yes | Yes |
| 14 | Other | Other |
| 15 | Bank & in person | Bank & in person |
| 16 | Yes | No |
| 17 | Yes | Yes |
| 18 | Less than $3000 | Nothing as I don’t have any |
| 19 | Yes - Family | Charity & family |
| 20 | Foodbank, Big Brothers Big Sisters & Heart and Stroke Foundation & Red Cross | Foodbank & Big Brothers Big Sisters & Heart and Stroke Foundation & Red cross |
| 21 | More than $100 | More than $100 |
| 22 | Accountant | Accountant |
| 23 | Don’t do that | Don’t do that |
| 24 | Family & self | Family, self |
| 25 | Family | Family, self |
| 26 | ATM & bank & cheque | Bank & cheque |
| 27 | Safe | Safe |
| 28 | Safe & filing cabinet | Safe |
| 29 | Bank & family | Family & bank I guess |
| 30 | No | No |
| 31 | Police | Police & family |
| 32 | Bank | Bank |
| 33 | Both | Someone making personal decisions for you |
| 34 | Someone who will make financial decisions for your | Legal document of someone making financial decisions for you |
Appendix F. Tables showing Inter-rater agreement
Table 2.
Inter rater assessment
| Gwets AC Kappa | |
|---|---|
| Raters A & B | 0.5089 (CI 0.4362 to 0.5816, P < 0.000) |
| Raters A & C | 0.3719 (CI 0.248–0.5010, p < 0.00) |
Footnotes
The content of this manuscript is based on a Master’s Thesis, which was completed and published in 2020 by the author.
CONFLICT OF INTEREST DISCLOSURES
I have read and understood the Canadian Geriatrics Journal’s policy on conflicts of interest disclosure and declare there are none.
FUNDING
No funding was received for this study.
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