Octavio A. Santos, PhD1,2, Johanna Fievre, MEng1, Lisa Sweet, PhD1, Frank Knoefel, MD1,4, Neil Thomas, MD1,3
1Bruyère Research Institute, Ottawa, ON
2Ottawa Hospital Research Institute, Ottawa, ON
3Department of Medicine, University of Ottawa, Ottawa, ON
4Department of Family Medicine, University of Ottawa, Ottawa, ONDOI: https://doi.org/10.5770/cgj.27.723
ABSTRACT
Mild cognitive impairment (MCI) confers a higher risk of developing dementia. While largely preserved, instrumental activities of daily living (IADLs) may be affected to varying degrees by MCI. The Memory Support System (MSS) is a curriculum and calendar/note-taking system that has proven effective in sustaining independence in IADLs for individuals with MCI and in protecting mood among care partners. Until recently, the MSS has only been utilized among English- and Spanish-speaking samples. This study investigated the use of a translated and culturally adapted MSS in four French-speaking, community-dwelling participants with MCI and their support partners. Measures of treatment adherence, daily function, self-efficacy for memory, quality of life, mood, anxiety, and caregiver burden were assessed at baseline, treatment end, and eight-week follow-up. By treatment end and follow-up, participants with MCI showed improvement in adherence to the MSS calendar, IADLs, everyday abilities requiring memory and planning, self-efficacy, depression and anxiety symptoms, and quality of life. Care partners showed improvement in quality of life and depressive symptoms, while their caregiver burden and anxiety symptoms generally remained unchanged. Findings suggest that, with appropriate training, Francophones with MCI can and will use the MSS, and that MSS training may contribute to daily functioning and aspects of participant and care partner well-being.
KEYWORDS: mild cognitive impairment, memory book, memory loss, functional ability, behavioural intervention, quality of life, caregivers, cognitive rehabilitation
By 2030, around 1 million Canadians will be living with dementia.(1) Mild cognitive impairment (MCI) is a high-risk stage for converting to dementia.(2,3) While instrumental activities of daily living (IADLs) are largely preserved in MCI compared to dementia, IADLs may be affected to varying degrees by MCI compared to cognitively healthy older adults.(4) Memory changes in MCI can lead to increased caregiver burden, requiring more oversight in IADLs.(5) The rising risk of MCI and dementia in the older adult population emphasizes the importance of finding interventions to sustain IADLs in MCI.(3) Offering non-pharmacologic interventions is now considered good practice due to the lack of medications that improve cognition or delay MCI progression.(2)
Growing evidence supports the use of non-pharmacologic interventions to mitigate cognitive decline and maintain IADLs in older adults with MCI.(6) The memory support system (MSS) for MCI promotes independent completion of personal goals and IADLs,(7,8) and has been utilized for over a decade as a core component of the Mayo Clinic’s HABIT® program.(9) The MSS has shown positive treatment adherence, sustained IADL independence, improved memory self-efficacy for individuals with MCI compared to randomized controls, and improved mood for care partners compared to control care partners.(8) A recent pilot study on its Spanish translation and cultural adaptation yielded similar results,(10) suggesting its potential applicability in other populations with memory decline and well-being improvement.
The 2021 census reported that 21.4% of the Canadian population speaks French as their primary official language.(11) In 2016, the percentage of individuals aged ≥65 in Ontario was higher among Francophones (19.5%) compared to Anglophones (16.2%).(12) Language barriers affecting access to health-care services have been a significant concern for Ontario’s Francophone seniors.(13)
This pilot study aimed to develop a linguistically and culturally appropriate adaptation of the MSS in French and evaluate its impact on program outcomes for Francophones with MCI and their care partners.
A pre/post intervention design (baseline, treatment end, and eight-week follow-up) was utilized. Inclusion criteria included age ≥50 years old; diagnosis of single or multi-domain MCI; Clinical Dementia Rating global (CDR) score of ≤0.5;(14) Montreal Cognitive Assessment (MoCA) score of ≥18;(15) available contact with a care partner ≥ two times weekly; a computer with access to the internet; and absence or stable intake of nootropic(s) for ≥ three months. Exclusion criteria included visual/hearing impairment, history of reading or written inability/disability sufficient to interfere with MSS training or concurrent participation in another related clinical trial. Participants were recruited in a memory clinic in Ottawa between January 2022 and February 2023. A total of 39 individuals were contacted to potentially participate in the study (Figure 1). The study was approved by the Bruyère Research Ethics Board (#M16-21-035) and preregistered at ClinicalTrials.gov (NCT05253365).
|
| ||
|
FIGURE 1 Recruitment flow chart | ||
Professional services were used to translate the MSS materials and measures. Bilingual professionals and volunteers reviewed and evaluated initial translations, resolving discrepancies with professional translators. Two French-speaking community volunteers field-tested the materials to create the final version.
The MSS and its manualized training curriculum are described in detail in prior reports.(7,8) Briefly, the MSS is a pocket-sized calendar and note-taking system with three sections: (a) events; (b) to-do’s; and (c) journaling. The MSS training curriculum applies three stages from learning theory (acquisition, application, and adaptation),(16) and consists of ten 1-hour sessions delivered over two to six weeks starting seven to 10 days after baseline assessment. It includes orientation, modelling, practice use, and homework assignments to be completed with assistance from the care partner. Participants progress to the next stage after demonstrating 100% accuracy on the intervention plan/questions (IPQs) for two consecutive days (see Appendix A for an example of the two-page-per-day calendar in French and Appendix B for the IPQs). The MSS trainer was a master’s level research coordinator (J.F.) supervised by a licensed psychologist (O.A.S.). After the intervention, each participant and their partner completed a semi-structured interview to provide suggestions for improving the MSS. The intervention only used the MSS training. One participant completed the MSS training virtually, through the Zoom platform, and three other participants had a combination of in-person and virtual sessions.
The following measures were used: Clinical Dementia Rating Scale;(14) Montreal Cognitive Assessment (MoCA);(15) Functional Assessment Questionnaire (FAQ);(17) Everyday Cognition (E-Cog) questionnaire’s memory and executive functioning subscales;(18) Self-Efficacy in Mild Cognitive Impairment Scale;(19) Quality of Life in Alzheimer Disease;(20) Center for Epidemiologic Studies Depression Scale;(21) State-Trait Anxiety Inventory;(22) and Zarit Burden Interview-short version.(23) Measures used are described in detail in Appendix C. All written measures were provided in French. At enrollment, participants with MCI and their care partners completed measures of cognitive and functional impairment. They also completed measures of treatment adherence, IADLs, self-efficacy for memory, quality of life, mood, anxiety, and caregiver burden at baseline, treatment end, and eight-week follow-up.
Data quality was investigated using descriptive statistics. The percentage of participants adherent to the MSS at each assessment point was calculated. Changes in treatment adherence, IADLs, mood, anxiety, quality of life, self-efficacy, and caregiver burden were assessed using effect sizes. Effect sizes were calculated using the mean and standard deviation of the change scores: Cohen’s d=(M1−M2)/stdev(pooled). In interpreting Cohen’s d, a small effect is indicated by a d value of 0.2, a medium effect by a d value of 0.5, and a large effect by a d value of 0.8. Statistical analyses were conducted using Microsoft Excel (365 version; Microsoft Corporation, Redmond, WA).
The final enrollment rate was 12.82% (n=5), with an 80% (n=4) retention rate for both the intervention and eight-week follow-up. Table 1 presents the characteristics of the study sample, comprising four participants with MCI and their care partners. Of the care partners, two were spouses, one a daughter, and another a friend. All participants and care partners self-identified as of European descent.
TABLE 1 Participant characteristics and baseline test results
Table 2 presents outcome variable scores for participants with MCI and their care partners at baseline (T1), treatment end (T2), and eight-week follow-up (T3). Treatment adherence scores rose from T1 to T2, slightly decreased at T3 but remained higher than at T1. The percentage of adherent MCI participants at each assessment point: 0% at T1, 100% at T2, and 75% at T3. FAQ scores decreased from T1 to T2 and stayed stable at T3. ECog total score and memory- and planning-related subscale scores dropped from T1 to T2; while the former returned to baseline, the latter remained steady from T2 to T3. ECog organization and divided attention subscale scores remained stable from T1 to T2 and slightly increased from T2 to T3. In participants with MCI, self-efficacy for memory and quality of life scores increased from T1 to T3, while anxiety and depressive symptoms decreased. Caregiver burden increased from T1 to T2 but nearly returned to baseline at T3. For care partners, quality of life increased and depressive symptoms decreased from T1 to T3, with anxiety symptoms remaining relatively unchanged.
TABLE 2 Outcome variables for participants with MCI and their care partners; comparison of outcome scores in a combined group at baseline (T1), treatment end (T2), and eight-week follow-up (T3)
After the MSS training, semi-structured interviews showed that the MSS calendar had a positive impact on the lives of participants with MCI and their care partners. Participants reported that the MSS training and calendar helped them better organize their daily routine and keep track of appointments and medications, increased independence in the completion of daily tasks, increased quality of life, increased self-confidence in doing daily activities, and decreased anxiety. All participants planned to continue using the MSS and would recommend it to others. Most partners reported increased quality of life and decreased caregiver burden. All partners felt participants had increased autonomy in daily tasks by relying on their MSS calendars.
We translated and culturally adapted the MSS into French, piloting it with four Francophones with MCI who successfully adopted it. MSS training significantly improved adherence, achieving levels consistent with the original MCI sample (8% baseline, 95% treatment end, 84% eight-week follow-up).(7) This pilot group showed promising outcomes at treatment end and eight-week follow-up.
By treatment end, participants with MCI showed improvement in IADLs and memory- and planning-related daily activities. This improvement was maintained at follow-up and consistent with previous trials of the MSS.(7,8,10) Also, similar to a previous MSS study,(7) there was improved self-efficacy for memory seen by treatment end and follow-up.
By the end of treatment and follow-up, participants with MCI and care partners exhibited less depression and improved quality of life. Although anxiety and caregiver burden slightly increased at treatment end, participants’ levels of anxiety were reduced during follow-up, while care partners generally returned to baseline levels of anxiety and caregiver burden. In contrast to earlier MSS studies,(7,8,10) participants maintained improvements in depression and anxiety symptoms at follow-up, yet caregiver burden did not improve on self-report measures, despite partners noting improved caregiver burden during interviews. The improvements in feelings of depression for both MCI participants and care partners suggest the treatment may have provided psychological benefits (e.g., social support, sense of purpose, and coping skills) in the context of physical distancing requirements during COVID-19.
Study limitations encompass a non-randomized, quasi-experimental design with a small sample. However, substantial effect sizes on daily and psychological functioning indicate potential advantages relative to prior MSS studies.(7,8,10) While these initial pilot results are promising, larger sample confirmation is warranted. Recruitment faced obstacles due to the pandemic’s influence on clinical and research endeavors. Some candidates were hesitant about technology for virtual visits, and others could not commit to the visit schedule, hindering the achievement of the initial goal of recruiting 20 participants with MCI.
Non-pharmacologic interventions for French-speaking Canadians with MCI are necessary. The study demonstrated that Francophones with MCI can effectively learn and implement a memory compensation curriculum. Using the MSS in French may enhance general functional status, quality of life, mood, anxiety, and self-efficacy. While the results align with prior MSS studies, further research with a larger French-speaking MCI sample is required for confirmation.
Not applicable.
We have read and understood the Canadian Geriatrics Journal’s policy on conflicts of interest disclosure and declare no conflicts of interest.
Research supported by the University of Ottawa Brain and Mind Research Institute and the Bruyère Academic Medical Organization Incentive Fund. F. Knoefel acknowledges funding for the University of Ottawa Brain and Mind—Bruyère Research Institute Chair in Primary Health Care Dementia Research.
1. Alzheimer Society of Canada. Dementia numbers in Canada [Internet]. Toronto, ON: Alzheimer Society of Canada; 2023 [cited 2023 Nov 14]. Available from: https://alzheimer.ca/en/about-dementia/what-dementia/dementia-numbers-canada
2. Petersen RC, Lopez O, Armstrong MJ, Getchius TS, Ganguli M, Gloss D, et al. Practice guideline update summary: Mild cognitive impairment: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology. Neurology. 2018 Jan 16;90(3):126–35.
Crossref PMC
3. Alzheimer’s Association. 2023 Alzheimer’s disease facts and figures. Alzheimer’s Dement. 2023 Apr;19(4):1598–695. E-pub 2023 Mar 14.
4. Altieri M, Garramone F, Santangelo G. Functional autonomy in dementia of the Alzheimer’s type, mild cognitive impairment, and healthy aging: a meta-analysis. Neurol Sci. 2021 May;42(5):1773–83. doi:10.1007/s10072-021-05142-02
Crossref PubMed
5. Cuc AV, Locke DE, Duncan N, Fields JA, Snyder CH, Hanna S, et al. A pilot randomized trial of two cognitive rehabilitation interventions for mild cognitive impairment: caregiver outcomes. Int J Geriatr Psychiatry. 2017 Dec;32(12):e180–87. doi:10.1002/gps.4689
Crossref PubMed PMC
6. Chandler MJ, Locke DE, Crook JE, Fields JA, Ball CT, Phatak VS, et al. Comparative effectiveness of behavioral interventions on quality of life for older adults with mild cognitive impairment: a randomized clinical trial. JAMA Netw Open. 2019 May 3; 2(5):e193016-. doi:10.1001/jamanetworkopen.2019.3016
Crossref PubMed PMC
7. Greenaway MC, Hanna SM, Lepore SW, Smith GE. A behavioral rehabilitation intervention for amnestic mild cognitive impairment. Am J Alzheimers Dis Other Demen. 2008 Oct;23(5):451–61. doi:10.1177/1533317508320352
Crossref PubMed PMC
8. Greenaway MC, Duncan NL, Smith GE. The memory support system for mild cognitive impairment: randomized trial of a cognitive rehabilitation intervention. Int J Geriatr Psychiatry. 2013 Apr;28(4):402–09. doi:10.1002/gps.3838
Crossref PMC
9. Mayo Clinic. Department of Psychiatry and Psychology HABIT Healthy Action to Benefit Independence & Thinking® [Internet]. [cited 2020 Oct 8] Available from: https://www.mayoclinic.org/departments-centers/psychiatry/services/habit-program
10. Santos OA, Rios-Rosales A, Pedraza O, Bergeron CD, Chandler M. Memory support system in Spanish: a pilot study. Brain Sci. 2021 Oct 21;11(11):1379. doi:10.3390/brainsci11111379
Crossref PubMed PMC
11. Statistics Canada. Languages statistics [Internet]. Published 2021. Available from: https://www.statcan.gc.ca/en/subjects-start/languages. Accessed April 25, 2023.
12. L’Assemblée de la Francophonie de l’Ontario. White Paper on Ontario’s Aging Francophone Population [Internet]. Ottawa, ON: L’Assemblée de la Francophonie de l’Ontario; 2019 Sep [cited 2023 Aug 25]. Available from: https://eapon.ca/wp-content/uploads/2021/09/White-Paper-Aging-Finale-version-En.pdf
13. Commissariat aux services en français de l’Ontario. Épilogue d’une institution franco-ontarienne RAPPORT ANNUEL 2018–2019 [Internet]. Toronto, ON: Commissariat aux services en français de l’Ontario; 2019 Apr 16 [cited 2023 Aug 25]. Available from: https://csfontario.ca/wp-content/uploads/2019/04/OFLSC-292187-Annual-Report-2018-2019-Fr_accessible.pdf
14. Morris JC. Clinical dementia rating: a reliable and valid diagnostic and staging measure for dementia of the Alzheimer type. Int Psychogeriatr. 1997 Dec;9(S1):173–76. doi:10.1017/s1041610297004870
Crossref PubMed
15. Nasreddine ZS, Phillips NA, Bédirian V, Charbonneau S, Whitehead V, Collin I, et al. The Montreal Cognitive Assessment, MoCA: a brief screening tool for mild cognitive impairment. J Am Geriatr Soc. 2005 Apr;53(4):695–99. doi:10.1111/j.1532-5415.2005.53221.x
Crossref PubMed
16. Sohlberg MM, Mateer CA. Training use of compensatory memory books: a three stage behavioral approach. J Clin Exp Neuropsychol. 1989 Dec 1;11(6):871–91. doi:10.1080/01688638908400941
Crossref PubMed
17. Pfeffer RI, Kurosaki TT, Harrah Jr CH, Chance JM, Filos S. Measurement of functional activities in older adults in the community. J Gerontol. 1982 May 1;37(3):323–29. doi:10.1093/geronj/37.3.323
Crossref PubMed
18. Farias ST, Mungas D, Reed BR, Cahn-Weiner D, Jagust W, Baynes K, et al. The measurement of everyday cognition (ECog): scale development and psychometric properties. Neuropsychology. 2008 Jul;22(4):531. doi:10.1037/0894-4105.22.4.531
Crossref PubMed PMC
19. Lorig K, Stewart A, Ritter P, González V, Laurent D, Lynch J. Outcome measures for health education and other health care interventions. Thousand Oaks, CA: Sage Publications, Inc.; 1996.
Crossref
20. Wolak-Thierry A, Novella JL, Barbe C, Morrone I, Mahmoudi R, Jolly D. Comparison of QoL-AD and DQoL in elderly with Alzheimer’s disease. Aging Ment Health. 2015 Mar 4; 19(3):274–78. doi:10.1080/13607863.2014.927822
Crossref
21. Fuhrer R, Rouillon F. La version française de l’échelle CES-D (Center for Epidemiologic Studies-Depression Scale). Description et traduction de l’échelle d’autoévaluation. Psychiatry Psychobiol. 1989 Jan;4(3):163–66. doi:10.1017/S0767399X00001590
Crossref
22. Wisniewski SR, Belle SH, Coon DW, Marcus SM, Ory MG, Burgio LD, et al. The Resources for Enhancing Alzheimer’s Caregiver Health (REACH): project design and baseline characteristics. Psychol Aging. 2003 Sep;18(3):375. doi:10.1037/0882-7974.18.3.375
Crossref PubMed PMC
23. Bédard M, Molloy DW, Squire L, Dubois S, Lever JA, O’Donnell M. The Zarit Burden Interview: a new short version and screening version. Gerontologist. 2001 Oct 1;41(5):652–57. doi:10.1093/geront/41.5.652
Crossref PubMed
Cognitive and functional impairment were assessed by the Clinical Dementia Rating Scale. It is a 5-point scale that assesses three areas of cognition (memory, orientation, and judgment/problem-solving) and three areas of function (community affairs, home/hobbies, and personal care). The evaluation involves a semi-structured interview with the patient and a reliable informant. Scores of ≤0.5 indicate normal or questionable impairment.(14) Cognition was assessed by the Montreal Cognitive Assessment (MoCA), a widely used screening assessment for detecting cognitive impairment. It assesses various areas such as visuospatial and executive abilities, memory, attention, language, abstraction, delayed recall, and orientation, with a total of 30 points. The MoCA is considered a reliable and valid instrument for detecting mild cognitive impairment.(15)
Regarding treatment adherence, participants received the MSS at the end of the initial assessment and were instructed to “begin using the calendar to help with your memory”. No further instructions were given. Spontaneous use of the MSS was assessed at the first training session 7–10 days later as the baseline for adherence and then repeated at treatment end and eight-week follow-up. Adherence was examined for two randomly selected days from the week prior to the appointment. Adherence was based on 4 criteria for a maximum of 10 points: bringing the MSS to the appointment (1 point), having at least one entry for today’s date (1 point), having two entries over two days for things that happened at a particular time (maximum 2 points), having two entries over two days for things that did not need to happen at a particular time (maximum 2 points), and having at least entries for each of the two days in the journaling section (maximum 4 points). Treatment adherence was defined as a score of ≥7 on the adherence assessment.(8)
The ability to perform IADLs was evaluated using two informant-based questionnaires: the Functional Assessment Questionnaire(17) and the memory and executive functioning subscales of the Everyday Cognition questionnaire.(18) The Functional Assessment Questionnaire evaluates how well older adults can perform ten IADLs over the last four weeks. The questionnaire uses a 4-point scale from 0, which means “normal,” to 3, which means “dependent”. The Everyday Cognition questionnaire measures a person’s capability to complete everyday tasks across various areas, including memory, language, visuospatial abilities, and executive functioning. The questionnaire is reliable and correlates well with other tests that assess daily and cognitive functions. For the study, only the memory and executive functioning subscales of the Everyday Cognition questionnaire were utilized. These subscales evaluate planning, organization, and divided attention.
To measure self-efficacy for memory, a modified version of the Chronic Disease Self-Efficacy Scales that included specific items related to MCI was used. The resulting 9-item Self-Efficacy in Mild Cognitive Impairment Scale focuses on memory and cognitive difficulties instead of general health conditions.(19)
To assess the quality of life, the Quality of Life in Alzheimer Disease instrument was used. It is a 13-item questionnaire designed for individuals with dementia, but has also been used for those with MCI and their care partners. It evaluates various aspects such as relationships, financial concerns, physical condition, mood, energy level, memory, daily functioning, and overall life quality. It uses a 4-point scale ranging from 1, which means “poor,” to 4, which means “excellent”.(20)
To measure mood, the Center for Epidemiologic Studies Depression Scale was used. It is a self-report questionnaire consisting of 20 items. The questionnaire uses a 3-point Likert-type response scale ranging from 0, which means “rarely or none of the time or less than one day”, to 3, which means “most or all of the time or five to seven days”.(21)
The State-Trait Anxiety Inventory, a 10-item rating scale modified from the original State-Trait Anxiety Inventory, was used to measure anxiety. This questionnaire was developed by the Resources for Enhancing Alzheimer’s Caregiver Health project.(22)
The short version of the Zarit Burden Interview, which consists of 12 questions, was used to assess caregiver burden. This inventory measures the level of stress experienced by family caregivers related to the impact of the participant’s disability on their lives.(23)
Correspondence to: Neil Thomas, MD, FRCPC, MSc, Bruyère Continuing Care, Hôpital Élisabeth Bruyère Hospital, 75 Bruyère St., Ottawa, ON K1N 5C8, E-mail: nthomas@bruyere.org
COPYRIGHT
This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial No-Derivative license (https://creativecommons.org/licenses/by-nc-nd/4.0/), which permits unrestricted non-commercial use and distribution, provided the original work is properly cited.
Canadian Geriatrics Journal, Vol. 27, No. 2, JUNE 2024