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Brief Report

Electronic interventions aimed at increasing self-worth in mild dementia may not be feasible

Martinez, Natalie MSN, FNP-BC (Nurse Practitioner)1; Stutzman, Sonja E. PhD (Research Manager)2; Olson, DaiWai M. PhD, RN (Professor and Staff Nurse)1,3

Author Information
Journal of the American Association of Nurse Practitioners: January 2021 - Volume 33 - Issue 1 - p 5-10
doi: 10.1097/JXX.0000000000000280

Abstract

Introduction

Increasing cognitive and social activity through various methods, including art, music, reading, playing games, and other cognitive brain games, have aided in reducing the risk for developing neurodegenerative disorders. Additionally, these activities may help maintain cognitive function and improve quality of life in persons with impaired cognition (Oguh, Eisenstein, Kwasny, & Simuni, 2014; Pohl, Dizdar, & Hallert, 2013). Modification of lifestyle factors to promote overall health may be protective against dementia (Di Marco et al., 2014). Certain leisure activities, characterized as mental, physical, and social activities, have shown a positive effect against cognitive decline. Reminiscence techniques and life stories may have a positive effect on mental health, esteem, and cognition. The primary aim of this study was to determine whether positive reinforcement to promote a sense of giving back enhanced self-worth and adherence to completing memory recall activities. A secondary aim was to see whether positive reinforcement decreased depressive symptoms and increased cognitive functioning in patients with Alzheimer disease (AD) who engage in a routine online cognitive-based activity.

Background

Alzheimer disease is an irreversible progressive neurological disorder affecting memory and cognition generally occurring at the age of 65 years or older (Alzheimer's Association, 2016). It is the most common cause of dementia in older adults. Alzheimer disease is the sixth leading cause of death in the United States (Alzheimer's Association, 2016). Five million Americans currently live with AD and the incidence is growing. The disease affects memory and cognition, which, in turn, affects day-to-day functioning. In the mild stages of AD, higher executive function skills are often impaired. In the moderate stages, difficulty with activities of daily living is observed (Alzheimer's Association, 2016). Simple daily activities can be challenging and frustrating for a person, even in the mild or early stages of AD. Difficulty with executive function and higher levels of thinking can lead to loss of the ability to handle finances, driving, daily responsibilities, employment, and, ultimately, independence. Loss of independence often equates to feelings of self-worthlessness, depression, apathy, and lack of motivation to engage in stimulating activities (Alzheimer's Association, 2016). Research is needed to identify effective ways to promote self-worth, lessen depression, and maintain current cognitive abilities in the AD population.

Studies assessing the impact of physical activity on cognition show inconsistent results (Brasure et al., 2018). Other studies suggest that increased cognitive and social activity may help reduce the risk for neurodegenerative disorders like AD and may help support brain health and enhance cognitive reserve (Woods, Aguirre, Spector, & Orrell, 2012). Nonpharmacological therapies, such as art, music, and other cognitive activities, may help stabilize or maintain cognitive function and may be linked to helping maintain independence and improve quality of life (Woods et al., 2012). These activities have also been linked to lessening depression, behavioral disturbances, agitation, confusional states, wandering, and even sleep disturbances (Alzheimer's Association, 2016; Woods et al., 2012). Leisure activities (mental, physical, and social) and mentally challenging activities (reading, writing, games, puzzles, music, discussions, studying, and organizational activities) may have a positive impact on cognitive function in patients with dementia (Kivipelto, Mangialasche, & Ngandu, 2018). Social activities, such as contact with friends, recreational, church, socialized living arrangements, memberships, and others, were found to have a protective effect on the risk of cognitive decline (Kelly et al., 2017). Participation in leisure activities may lower stress, decrease depression, and promote well-being and a healthy lifestyle in the AD population (Wang, Xu, & Pei, 2012).

Generative activities, such as conversations about past and present events, topics of interest, word games, puzzles, and music, have been shown to have a positive effect on cognitive functioning and quality of life in persons with mild-to-moderate dementia (Woods et al., 2012). The concept of being involved in meaningful activities, which is an activity that enables a person with dementia to remain involved in everyday activities and personal relationships, was shown to benefit social, physical, and mental stimulation in persons with dementia at varying degrees (Roland & Chappell, 2015). A few studies have demonstrated that creative activities, such as creative writing techniques, can support reflection and decrease depression and anxiety in dementia patients (Bailey et al., 2016). Reminiscence techniques have been studied as a therapeutic intervention and have been shown to lead to positive mental health, enhanced esteem, improved cognition, reduced caregiver strain, and improved communication and socialization in dementia patients (Dempsey et al., 2014; Woods, O'Philbin, Farrell, Spector, & Orrell, 2018). Similarly, life reviews or life “story books” may improve quality of life in patients with dementia (Subramaniam, Woods, & Whitaker, 2014).

The purpose of this study was to investigate cognitive enhancing interventions, more specifically meaningful activities in patients with mild AD. This study used the technique of reinforcing a sense of “giving back” or “contribution” that may enhance self-worth and therefore compliance to a cognitive-based activity in persons with AD. Additional data were collected to explore secondary outcomes of these interventions on cognitive functioning and depression.

Methods

This was a prospective randomized pilot study that received Institutional Review Board approval to consent patients and to explore positive reinforcement to promote a sense of “giving back” as a means to enhance self-worth and adherence to memory recall activities in persons with mild AD. Eligible participants who were diagnosed with mild AD were consented from a Neurology Memory and Cognitive Outpatient clinic at a large academic university in an urban setting. Participants were over 18 years old, English speaking, and scored a Mini-Mental Status Examination (MMSE) of at least 18 at the time of consent. Enrolled participants completed online modules consisting of writing prompts about life events and other topics designed to enhance self-worth and maintain cognitive functioning. A reinforcement prompt was electronically given through REDCap after each submitted writing prompt to promote a sense of “giving back” to the experimental group. Longitudinal cognitive functioning and depression data were collected from the patient's electronic medical record (EMR) and through patient self-report forms.

Procedures

After consent, participants completed the Rosenberg Self-Esteem Scale (RSES) and the Geriatric Depression Scale (GDS). Participants were then randomized to control group or experimental group and given a login to the intervention software (REDCap) to complete the modules. The intervention period lasted approximately 3 months for each participant. Follow-up assessments were completed after the intervention and during the participant's next scheduled clinic appointment. At follow-up, the RSES and GDS were completed in pen and paper format, and the MMSE was completed by the investigator (N.M.) who was trained to administer this assessment.

All participants were instructed to access the REDCap software at least three times weekly. The cognitively oriented task involves answering one question that is aimed at enhancing positive memory recall (Supplemental Digital Content 1 at http://links.lww.com/JAANP/A29). There were a total of 40 online interventions, with each task taking about 5 minutes to complete. At the end of three months, each participant completed the RSES and the GDS. Additionally, the study team collected data from the medical record on the patient's MMSE. On exit from the study, every participant was given an envelope and print out of the work they had done; much of this work is story-telling and may have specific meaning to the patient or their family.

Control group participants were thanked for their participation after each intervention. They were contacted bi-monthly to discuss any questions that came up and remind them to continue to complete the intervention. The control group received standard reminders without positive reinforcement. Experimental group participants received a prompt indicating that their intervention content was submitted, and thanking them for completing the intervention. In addition, the experimental group also received a different feedback prompt (Table 1) each time for the purpose of positive reinforcement to promote self-worth. Participants assigned to the experimental group were contacted bi-monthly via phone or email to ask whether they had any questions and to remind them to continue to complete the intervention. The experimental group also received positive reinforcement and a reminder of helping others via phone or email. A different feedback prompt was used each time for the purpose of positive reinforcement to promote self-worth in the experimental group (Table 1). Both groups received the same quantity of reminders.

Table 1
Table 1:
Electronic feedback prompt for the experimental group

Measures

The assessment measures included the RSES, GDS, and the MMSE. In addition to the assessment measures, the following data were extracted from the EMR for demographic information: age, race, ethnicity, gender, diagnosis, and medications. The GDS is a 15-item self-report scale, with lower scores indicating higher depressive symptoms. A score of five or below may constitute a depression diagnosis. Internal consistency and split-half reliability for the GDS is high (α = 0.94). Test–retest reliability has also shown to be high, with 0.85 correlation (Yesavage et al., 1982).

The MMSE is used to determine levels of cognitive functioning (Alzheimer's Association, 2016). The seven-item tool is used in an interview format. The maximum score is 30. Scores ranging from 24 to 30 indicate normal functioning and no impairment, scores ranging from 18 to 23 indicate mild cognitive impairment, and scores ranging from 0 to 17 indicate severe cognitive impairment (Pangman, Sloan, & Guse, 2000). The MMSE is widely used and has adequate reliability and validity. Test–retest reliability generally ranges between 0.80 and 0.95 (Pangman et al., 2000). The MMSE has also shown high specificity and sensitivity, specifically to dementia groups (Pangman et al., 2000). Of note, the MMSE is a proprietary instrument now and is no longer free to download and use without permission.

The RSES is a 10-item self-report measure of the patient's perception of global self-worth (Alessandri, Vecchione, Eisenberg, & Łaguna, 2015). All items are answered on a 4-point Likert scale, which ranges from strongly disagree (1 point) to strongly disagree (4 points). The scale shows strong validity (α = 0.72–0.85) and test–retest reliability (α = 0.85). A translated version of this scale was recently used in a study of caregiving for patients with AD (Nishio & Ono, 2015). Although it has not been used in the United States with memory disorders, there appears to be congruent validity to support a pilot study in this population.

One portion of the intervention included that participants write sentence-style free-text responses. These were submitted via REDCap. The sentence completion score was defined as the percentage of sentences typed into REDCap that contains a subject, a verb, and at least one punctuation mark. Data abstracted from the EMR were entered into an electronic spreadsheet (MS Excel). Data captured from REDCap were downloaded to an electronic spreadsheet and stored in an electronic spreadsheet (MS Excel) as well. For the purpose of analyses, the data were converted to an SAS dataset (.sas7dbat) file, and all analyses were completed using SASv9.4. Descriptive statistics were generated for the entire sample using appropriate parametric and nonparametric tests for measures of central tendency. Next, univariate outcomes were explored comparing pretest and posttest scores for each variable. The primary hypothesis required a paired t-test by group assignment.

Results

Of the 28 participants, 50% were female ranging from 62 to 93 years old; mean (SD) age was 75.6 (6.9) years (Table 2). Diagnoses included AD (15), mild cognitive deficit (11), and tardive dyskinesia (1). The majority were Caucasian (24), with 1 African American, 1 Asian, 1 Pacific Islander, and 1 not declared; 25 participants were non-Hispanic, and 3 self-identified as Hispanic. Of the six participants who withdrew from the study, two were assigned the control arm and four were assigned the experimental arm, resulting in 11 participants in each group. Participants logged into the REDCap software a mean (SD) of 15.9 (15.7) times during the intervention period. Although control participants accessed REDCap more frequently than their experimental counterparts, this was not statistically different (17.3 vs. 14.2 times, respectively; p = .6118). The median number of assignments completed was 12 in each group, and only two participants in the control group and three participants in the experimental group completed all 40 of the REDCap assignments.

Table 2
Table 2:
Demographics

Table 3 provides comparisons of mean (SD) pretest and posttest scores for the RSES, GDS, and MMSE examinations. The paired t-test was used to explore for differences in pretest and posttest scores by group assignment. In the control group, there were no statistically significant differences in pretest versus posttest RSES (p = .9215), MMSE (p = .1263), nor GDS (0.1291). Similarly, there were no statistically significant differences in pretest versus posttest RSES (p = .2586), MMSE (p = .2361), nor GDS (0.2875) in the experimental group. Sentence structure was scored as complete (containing subject, verb, and punctuation) in 100% of attempts. Finally, regression models were constructed to explore associations between frequency of accessing the intervention and the change in score (derived as the pretest minus posttest). Access was not associated with RSES change (r2 = 0.06; p = .3288), MMSE (r2 = 0.06; p = .2830), nor GDS (r2 = 0.07; p = .3769).

Table 3
Table 3:
Access and outcomes by group assignment

Discussion

Despite the rush to embrace electronic media and Internet-based media interventions, the findings suggests that using a computer or app to administer a cognitive-based activity may not be optimal in a dementia population. Our results add to a growing body of literature that computer-based interventions for those with cognitive decline have inconsistent results (Ekström, Ferm, & Samuelsson, 2017; Jenkins, Lindsay, Eslambolchilar, Thornton, & Tales, 2016; Klimova & Maresova, 2017). A higher than expected number of participants who were presented with the study declined participation. Anecdotally, many stated reluctance to participate due to the intervention being computer-based. Participants reported that they did not use their computer or were not comfortable using their computer for this research study as reasons for not participating.

Other deterrents with regard to entering into the study included the intervention was a nonpharmacological treatment. Some patients declined due to an indication that they are already “over involved” in enough cognitive activities on a daily basis and did not “need” more cognitive activities. Also, some patients did not join the study due to reports that they were not interested in a writing-based activity or journaling activity and would not enjoy this kind of activity. Moreover, some did not join due to lacking enough caregiver support to properly assist the patient with this activity (e.g., provide reminders to complete the modules). Finally, some patients reported that they would not join the study due to a concern about breach of privacy and that their information may be dispersed to other entities. These findings embark on an important but simple message to avoid computer-based modalities in studies that involve a dementia-based population. This finding could even be generalized to an older or aging population. Similar studies have also found that using a computer-based modality may be less appealing to the older population in general (Jenkins et al., 2016; Namazi & McClintic, 2003).

The results of the pretest and posttest showed no statistically significant differences in self-worth, depressive symptoms, or cognition. This was true for both the experimental and the control groups, suggesting that the positive reinforcement technique was not a factor to the above variables. This could be due to the intervention not being robust. Additional follow-up or more frequent follow-up with positive reinforcement may be optimal for future studies. As stated above, the RSES has not been validated in the AD population and the data in from this study seem to suggest that this scale may not be adequate for this population. The mean GDS scores from all participants (preintervention and postintervention) did not meet the criteria for depression, suggesting that this may have not been a high-risk group of individuals and that they may have not needed an intervention aimed at reducing depressive symptoms that were not there. However, previous research has shown that depression in the older population may manifest itself in an atypical fashion, which may have not been directly addressed in this particular study (Fiske, Wetherell, & Gatz, 2009).

The scales may have not been sensitive enough to detect small changes in patients, and future studies may want to consider more frequent testing or different scales with higher levels of sensitivity. The small sample size may have also affected the ability for the scales to detect the differences in the intervention. A larger sample size would be helpful for future studies.

These results can help guide decisions about optimal methods of delivering cognitive-based activities to seniors and patients with dementia in a clinical setting or with regard to future research studies. It is imperative that providers spend time to counsel and provide therapeutic interventions to support patients with dementia, including cognitive-based activities to support brain health. It is especially important with regard to the nurse practitioner role because it pertains to providing advice, counseling, and education with regard to cognitive-based activities in senior patients or patients with dementia that is supported through current research data.

Limitations

Limitations of this study include difficulty with enrollment and deterrents to entering the study, especially general reluctance to engage in a computer-based intervention. The lower enrollment may have affected the results, but the reluctance to use a computer provides evidence that even if the interventions were successful, the results would have limited generalizability. Difficulty with follow-up was also a limitation to this study. Several patients failed to follow-up or repeatedly cancelled their standard clinic appointment, which increased the amount of patients lost to follow-up. Technical difficulties were also a limiting factor; about three patients complained of difficulty logging into the REDCap system or not getting a repeat prompt to continue to the next module. The intervention caused agitation in about three patients. There was some difficulty with getting in touch with the patient or family member via phone or email to check in. Some of our patients obtained more help with the activity from their family members than others, which could have skewed the results. The environment was not well controlled because the intervention was administered in each of the participants' separate homes.

Conclusion

The intervention of positive reinforcement did not show differences in increasing self-worth or adherence to the cognitive-based activity. Also, the intervention did not show differences with regard to lowering depressive symptoms or decreasing cognitive decline.

Additionally, there were several hurdles to enrolling patients into a protocol involving Internet-based interventions. Future studies are needed to determine whether a different kind of intervention should be used with additional consideration to frequency of positive reinforcement interactions and type of motivation provided. Well-designed studies on this subject are needed with aims to include a larger sample size, well-controlled environment, and perhaps longer follow-up time intervals.

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Keywords:

Alzheimer disease; cognitive decline; dementia; memory; nursing; technology-enabled learning

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