Improving Dementia Health Literacy Using the FLOW Mnemonic

Abstract

Background. Dementia health literacy is low among the public and likely poses a significant barrier to Alzheimer’s disease (AD) symptom recognition and treatment, particularly among minority populations already facing higher AD burden. We evaluated the pilot phase of a novel AD health education program, Old SCHOOL (Seniors Can Have Optimal Aging and Ongoing Longevity) Hip-Hop (OSHH), which is designed to enable children to be AD health educational conduits in the home (“child-mediated health communication”). Method. OSHH applied our stroke-validated model of engaging, dynamic, and age- and culturally appropriate curriculum delivered to elementary school-age children (fourth/fifth grades, ages 9-11 years). We assessed AD knowledge among the children at baseline, immediately following the intervention (1-hour program delivered daily over 3 consecutive days), and 3 months later. For key AD symptoms, we developed the FLOW mnemonic (forget, lose, overlook, write/wander); students were additionally taught action plans for recognized symptoms. Results. Seventy-five students completed baseline assessments, and 68 completed posttesting. AD symptoms in FLOW were not well known at baseline (individually ranging from 16% to 71% correct) but were highly learned after 3 days (89% to 98% correct) and retained well after 3 months (80% to 95% correct, p ≤ .01 for all comparisons vs. baseline). AD localization, including its effect on memory and the hippocampus, was also highly learned and retained (p < .001). Eighteen students (24%) reported having a close friend/family member with AD. Conclusions. This study suggests our hip-hop health education model may be an effective method to improve AD health literacy.

Keywords

aging and health behavioral theories community based participatory research health behavior health promotion school-based theory of reasoned action

Health literacy is defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (Ratzan & Parker, 2000, introduction). Accordingly, we can define Alzheimer’s disease (AD) health literacy as the capacity to learn the cardinal symptoms of AD—memory loss, aphasia, dyspraxia, disorientation, impaired judgment, and mood disturbance (as outlined in the Alzheimer’s Disease Knowledge Scale; Carpenter, Balsis, Otilingam, Hanson, & Gatz, 2009; and condensed in the Alzheimer’s Association’s [2009] “Know the 10 Signs”)—in order to make appropriate health decisions when AD symptoms are recognized. Although few studies exist, those that have reviewed health literacy of cognitive health and AD, including its pathophysiology, suggest lay public knowledge among adults is poor (Anderson, Day, Beard, Reed, & Wu, 2009; Arai, Arai, & Zarit, 2008; Blay & Piza Peluso Ede, 2008; Rimmer, Wojciechowska, Stave, Sganga, & O’Connell, 2005; Werner, 2003, 2005). Even though concepts of dementia likely begin to develop in elementary school–age children,(Fox, Buchanan-Barrow, & Barrett, 2008) there are no dementia public awareness programs that focus on younger generations in the United States. Improving AD health literacy among youth populations could have important effects on lifelong AD knowledge and potentially to related health behaviors.

As a means to improve stroke health literacy, our group previously developed an effective school-based health education model to improve childhood stroke knowledge, called Hip-Hop Stroke (HHS). The program significantly improves stroke knowledge and is associated with long-term retention of key health concepts (Williams, Desorbo, Noble, Shaffer, & Gerin, 2012; Williams & Noble, 2008). Delivered in hour-long school-based programs over 3 consecutive days, HHS utilizes hip-hop music, dance, cartoons, and comic books to empower children, ages 9 to 11 years (elementary school Grades 4 through 6) to learn about important health concepts related to stroke, including recognition, treatment, and prevention. The model delivers simple health messages through mnemonics (Miller, King, Miller, & Kleindorfer, 2007) and culturally appropriate and age-appropriate music and dance to enhance an interactive didactic curriculum (Williams & Noble, 2008).

The development of our programs, including the one described here, follows two models that have been demonstrated as predictors of behavior change and have been reviewed elsewhere (Williams, DeSorbo, Noble, & Gerin, 2012; Williams, Desorbo, Noble, Shaffer, et al., 2012; Williams & Noble, 2008). In brief, the theory of reasoned action posits that a series of related cognitive constructs operate to produce an intention to act, which is a precursor to the desired outcome, that is, engaging in the act (i.e., making use of the AD information as part of standard practice; Fishbein, 2008). The second is self-efficacy (a component of social cognitive theory), which posits that control over one’s outcomes produces a sense of mastery for those behaviors and that increased self-efficacy predicts increased motivation to engage in the desired behaviors as well as a demonstrated increase in the behavior itself (Allen, 2004). These two models are complementary: Reasoned action influences one’s self-efficacy—helping persons believe in their ability to act is a key precursor to self-efficacy, thus influencing behavior. The theory of reasoned action influenced the cognitively focused content of the intervention; children are taught to identify their potential role as part of the health management family structure (such as practical safety measures for a family member with AD) and to establish a common norm among the children and a self-perception of agents of change in AD awareness within the family unit. The curriculum is designed to foster a positive attitude toward adoption of such a role and its feasibility. The role-play segment particularly aims to reinforce the normative expectations of the children in this regard as well as foster a belief in one’s ability to act, which is a key determinant of increased self-efficacy and the desired behavior change.

Building upon this methodology, we developed an AD health education intervention that incorporates strategies for overcoming cultural barriers related to beliefs (Alzheimer’s Foundation of America, 2007; Hinton, Franz, Yeo, & Levkoff, 2005) to teach elementary school children to recognize cardinal AD symptoms and develop an appropriate response to them. Given that AD disproportionately affects minority populations at significantly higher rates than European Americans (Fillenbaum et al., 1998; Gurland et al., 1999; Hendrie et al., 1995; Heyman et al., 1991; Husaini et al., 2003; Perkins et al., 1997; Schoenberg, Anderson, & Haerer, 1985; Tang et al., 1998, 2001; Unverzagt et al., 2001; Weintraub et al., 2000), and minority populations are more likely to underestimate AD risk or be unaware of their poor AD health literacy (Connell, Scott Roberts, & McLaughlin, 2007), we planned to deliver this pilot to a local minority population with potentially high AD risk. We hypothesized that elementary school children can be taught important public health issues relevant to AD: symptoms of AD versus normal cognitive aging, when to seek evaluation by a health professional, and safety measures for family members with AD.

Method

Study Design

For our AD-focused program presented here, we matched this pilot study design to that of our HHS program (Williams & Noble, 2008). Namely, for this pilot study, we used a one-group, pretest-posttest design relative to an AD education intervention. We provided information to the adult family members of the children studied to provide an opportunity to opt out of the research 1 week in advance of the program (none did). Participant data were captured without unique identifiers; thus group comparisons were used for this study. All participants attended a 1-hour AD education session on 3 consecutive days as part of the school day. Assessments of AD knowledge were performed at baseline on Day 1 (n = 75), at the end of Day 3 (n = 68), and again 3 months after conclusion of the program during an unannounced return to the school (n = 68). A booster session was provided at the end of the 3 months during the return visit (immediately following the 3-month assessment). Knowledge relative to the booster session was not assessed in this study; the booster session is provided as another educational session that has value for the school (rather than as a point of contact just for testing purposes). The study was considered exempt from research by the Institutional Review Board at Columbia University Medical Center and approved for research by the New York City Department of Education Institutional Review Board.

Participants

Location

For this pilot, we planned to enroll one school from a convenience sample of elementary schools in central Harlem, New York. The administration of the first school contacted by our research staff agreed to participate, and this school was enrolled for the study. Central Harlem is an inner-city community in northern Manhattan; the area is socioeconomically disadvantaged with a median income approximately half that of Manhattan or New York City (New York City Department of Transportation & New York City Department of City Planning, 2005), and more than a third live below the poverty line (Summers, Cohen, Havusha, Sliger, & Farley, 2009). Local residents have limited opportunities to purchase healthy foods (Gordon et al., 2011), and chronic diseases are more prevalent in this community than in other areas of New York City (Karpati, Lu, Mostashari, Thorpe, & Frieden, 2003; Olsen, Van Wye, Kerker, Thorpe, & Frieden, 2006).

Study Population

Children in fourth and fifth grades (ages 9 to 11 years) at the participating school identified from school rosters consented and enrolled into the program. Total enrollment for these grades was 81 students. The racial-ethnic composition of the school is 86.4% African American, 10.4% Hispanic, non-Hispanic European American (0.9%), and Asian (0.5%); the race-ethnicity of the remainder is not known. The study took place between March and June 2012.

Intervention

Old SCHOOL (Seniors Can Have Optimal Aging and Ongoing Longevity) Hip-Hop (OSHH)

OSHH uses dance, culturally appropriate and age-appropriate music, role-play skits, and short animated films as motivating tools to enhance a simple didactic program delivered over 3 days. Using the HHS model, we educated students using interactive play, cartoons, and an original song featuring an AD-themed rap. For the development of a novel mnemonic to this program, we reviewed validated concepts of AD relevant to public health, including the Alzheimer’s Disease Knowledge Scale (Carpenter et al., 2009), the Alzheimer’s Association’s (2009) “Know the 10 Signs,” and clinical experience of the authors. Through our experience with the HHS program, we found that six to seven key disease knowledge elements could be reasonably included in a combination of mnemonic and simple related messaging and retained for a prolonged period of time (Williams, Desorbo, Noble, Shaffer, et al., 2012; Williams & Noble, 2008). As such, one of our authors (MGH) devised for this program the FLOW mnemonic (forget, lose, overlook, write/wander), which captures many of the cardinal symptoms of AD. Specifically, FLOW reviews forgetting conversations, words, people/names, or dates; losing objects, one’s way (direction), or interest; overlooking bills, hygiene, household cleanliness, or safety; and increasing reliance upon written lists or wandering away from the family. In addition, we included key AD educational elements of localization (that AD occurs in the brain in areas specific to memory and in the hippocampus). Although we did not include them specifically in the mnemonic or song, we reviewed additional AD symptoms of executive dysfunction by introducing examples such as difficulty making change and misuse of common household appliances.

In response to recognizing a patient with possible AD, we taught students to “go with the FLOW”—a call to action that included bringing AD symptoms to the attention of the family unit, encouraging medical evaluation, and using methods to improve safety and positive engagement with a person with AD. With each AD symptom, we provided comparisons with normal aging. With the intention of improving the sensitivity of true AD symptom recognition (and lowering the rate of false positive symptom recognition), we emphasized that symptoms of impairment that occur “once in a while” more likely reflected normal cognitive aging, whereas AD symptoms would be more consistently present, occurring “all the time”; the FLOW mnemonic was emphasized with symptoms whenever possible. Two contrasting adult characters, Ima Good and Anita Help (JMN and Ian Ellis James), were introduced to emphasize these points. After reviewing each profile, students were asked to decide if the characters were experiencing normal aging or if one “might have the FLOW” (AD). The intervention also involved behavioral engagement on the part of the children, with role-play of AD symptoms and the communication of the AD-related information to an adult. All AD concepts were introduced in a comic book (excerpts shown in Figure 1) that was distributed during the program and made available on our website along with the program’s song, “Go With the FLOW” (http://hiphoppublichealth.org/oldschoolhiphop). The educational team comprised two health educators, one of whom was a study coauthor (MGH). Additional study coauthors (JMN and OW) were on-site for the purposes of program quality assurance but did not deliver any educational elements of the program. Programmatic specifics are listed in Table 1. Given our concern for introduction of potentially sensitive subject matter to these young children, we consulted a pediatric psychologist in advance of the program, and independent of intervention, we monitored program feedback via student participation, outreach to parents, close collaboration with school staff, and a student focus group from the school, which immediately followed Day 3 programming with 4 participants (but did not include additional education).

Figure 1.

Excerpts from the Old SCHOOL (Seniors Can Have Optimal Aging and Ongoing Longevity) Hip-Hop comic book distributed at the program, reviewing the FLOW (forget, lose, overlook, write/wander) mnemonic and examples of normal versus pathologic cognitive aging.

Table 1.

Curriculum for Old SCHOOL (Seniors Can Have Optimal Aging and Ongoing Longevity) Hip-Hop.

Element	Day 1: 60 minutes	Day 2: 60 minutes	Day 3: 60 minutes
Topic	• Pretest evaluation of dementia literacy • Introduction to dementia	• Review of Day 1 • Introduction of normal versus pathologic aging	• Review of Days 1 and 2 • Immediate posttest evaluation
Content	1. Demonstration of audience response system 2. Unprompted pretest 3. “Breaking down broken memory,” Part 1 a. Introduction of concepts of memory, including the broad role of the hippocampus, forgetting, and Alzheimer’s disease b. Performance of “Go With the FLOW” song c. Children are encouraged to discuss with parents, including provision of comic book and instructions to log onto website with parents	1. Review of Day 1 2. “Breaking down broken memory,” Part 2 a. Early symptom detection b. Distinguishing normal versus abnormal forgetting, losing, overlooking, and writing using characters Ima Good (normal aging) and Anita Help (pathologic forgetfulness) c. Student role-play of forgetfulness • Pathologic forgetfulness: grandparent repeating self in several phone calls within 1 hour • Normal aging: parent forgetting where glasses were placed (atop head) d. Repeat audio performance of song e. Participants again encouraged to review with parents	1. Review of Days 1 and 2 2. Repeat audio performance of song 3. Encourage child to engage parents in home activities 4. Early (immediate) posttest

Assessments and Analysis

All student responses were collected using an audience response system, which employs wireless keypads through which children answer questions projected onto a large screen. This method allows for rapid collection of large data sets, improves interactivity of programs, and increases student participation and retention rates (Kay & Lesage, 2009); we have previously validated its use in our other programs (DeSorbo, Noble, Shaffer, Gerin, & Williams, 2013). Responses to individual questions for this study ranged from 91% to 100%; we did not impute missing data, thus all analyses are presented based on recorded values. As detailed in Table 2, evaluations of knowledge occurred for the children (a) immediately before the program (pretest), (b) at the end of the 3rd day of the program (immediate posttest), and (c) at 3 months (delayed posttest). AD symptom questions were asked as yes/no questions (expected knowledge null value = 50%), whereas localization and FLOW questions were asked as multiple choice (expected value = 25%). There were two exceptions: A question on household appliance usage was asked at the beginning of Day 2 (a technical error precluded response capture on Day 1, but the concept was not otherwise taught on Day 1); awareness of AD in the family was explored only on program Day 2 after the initial delivery of AD education and encouraging children to review the program with their parents. We did not record whether student-parent interactions occurred across the test sequence. For the analyses, all incorrect responses were collapsed into a single incorrect category and compared against the correct response. Most analyses were done using 2 × 2 Pearson chi-square, using Fisher’s exact test when necessary; t tests and analysis of variance (ANOVA) were used for continuous data (composite variables), all using SPSS Version 19 (IBM).

Table 2.

Test Questions and Grading Scheme Used to Evaluate the Program.

#	Concept	Actual question	Response format	Correct answer(s)	Distracters	Expected group response with no baseline Alzheimer’s knowledge	Test(s) featuring question
1	AD localization	Where in the body does AD occur?	Multiple choice	Brain	• Stomach • Lungs • Heart	25% correct	All
2	AD localization	In which part of the brain does AD happen?	Multiple choice	Remembering part	• Breathing part • Feeling part • Seeing part	25% correct	All
3	AD localization	What part of the brain helps you remember?	Multiple choice	Hippocampus	• Medulla oblongata • Brainstem • Pons	25% correct	All
4	AD sign and symptom recognition	Is the following a sign of AD?	Yes or no	• Forgetting words and familiar faces and names • Losing things all the time • Overlooking chores, like paying the bills and cleaning • Writing things down all the time • Having trouble counting out the right amount of money when paying • Having trouble using household appliances, like a remote control or microwave	• Chest pains • Facial droop	• 50% correct each question • 6 parts, 1 point given for each correct answer • Overall expected score 3 points, possible score range 0-6 • When including distracters, overall expected score 4 points, possible score range 0-8	All
5	AD sign and symptom recognition specifically related to FLOW	What does FLOW stand for?	Multiple choice	Forget, lose, overlook, write	• Fall, lean, overeat, walk • Face, leg, outer ear, wrist • Funny, lazy, old, wrinkled	25% correct	Immediate and 3 month posttests
6	Personal/family experience with AD	Does your family have a friend or relative, like a grandparent, that has AD?	Yes or no	NA	NA	NA	Day 2 of initial program

Note. AD = Alzheimer’s disease; NA = not applicable.

Results

A total of 75 students participated in the program’s pretest on Day 1, composed of all fourth and fifth graders in attendance at school on that day. Thirty-five were from fourth grade, 34 were from fifth grade, and 6 did not respond; grade qualifiers were not recorded for the immediate posttest (n = 68). For the delayed posttest, 68 students participated, including 34 fourth graders and 32 fifth graders, and 2 did not respond. A summary of findings for AD symptom recognition is presented in Figure 2. Recognition of all AD symptoms significantly improved between the pretest and immediate posttest, p ≤ .01 for all comparisons, χ²(1) ranged from 6.5 to 91.5. However, comparing the delayed posttest with the pretest reveals that AD symptoms in the FLOW mnemonic were best retained, p < .001 for all comparisons, χ²(1) ranged from 14.3 to 66.0, whereas AD symptoms not in FLOW were least retained: paying bills, 35 (59.3%) correct in delayed posttest versus 56 (52.2%) in pretest, χ²(1) = 0.64, p = .42, and misuse of appliances, 47 (73%) versus 35 (52%), χ²(1) = 6.8, p = .01. We also developed a composite measure to reflect all symptoms for which we provided education during the program, including one with just the six AD symptoms and another eight-point composite also including two non-AD distracters (chest pain and facial droop). We identified significant learning immediately after the program and retention 3 months after program completion (p < .001 for pretest vs. either posttest for both composite measures as presented in Table 3). Moreover, awareness of AD occurring in the brain, its effects on memory, and localization to the hippocampus all improved over the test sequence (Table 3). Given that FLOW was a mnemonic novel to the program, we did not assess FLOW awareness in the pretest; however, in the immediate posttest, 58 (87.9%) students were able to correctly identify the FLOW mnemonic, and this concept was well retained after 3 months (61 students, 95.3%, p = .11, by Fisher’s exact test). Regarding personal experience with AD, 18 (24%) of the students indicated that they had a close friend or relative with AD on Day 2 of the intervention.

Figure 2.

Proportion of students associating six signs and symptoms of Alzheimer’s disease (AD) and two non-AD distracters with AD over the course of the study sequence. All questions were answered in yes/no format. AD symptoms included in the FLOW (forget, lose, overlook, write/wander) mnemonic were best retained after 3 months.

Table 3.

Alzheimer’s Disease (AD) Localization and Composite Symptom Recognition.

Question	Expected value	Pretest (n = 75)	Immediate posttest (n = 68)	Delayed 3-month posttest (n = 68)	p value immediate posttest vs. pretest	p value delayed posttest vs. pretest
AD localization (brain)^a n (%) correct responses	25% correct	51 (74)	58 (89)	55 (86)	χ²(1) = 5.2, p = .02	χ²(1) = 3.0, p = .09
AD localization (remembering)^a n (%) correct responses	25% correct	42 (62)	61 (94)	60 (91)	χ²(1) = 19.6, p < .001	χ²(1) = 15.7, p < .001
Remembering localization (hippocampus)^a n (%) correct responses	25% correct	7 (10)	54 (83)	52 (78)	χ²(1) = 70.9, p < .001	χ²(1) = 62.2, p < .001
AD sign and symptom recognition^b (composite of 6 AD items in Question 4, Table 2) Mean (95% CI) correct score	3 (range 0-6)	2.4 (1.4)	5.4 (0.8)	4.7 (1.3)	t = 13.9, p < .001	t = 9.0, p < .001
AD sign and symptom recognition including distracters^b (composite of all 8 items in Question 4, Table 2) Mean (95% CI) correct score	4 (range 0-8)	3.7 (1.4)	7.3 (1.0)	6.5 (1.5)	t = 15.6, p < .001	t = 10.1, p < .001

Note. Over the test sequence, AD localization (brain), χ²(2) = 6.2, p = .046. Otherwise, other overall comparisons p < .001.

Comparisons were based on Pearson χ² comparison of proportions. ^bComparisons were based on t test comparison of means.

Discussion

Our study demonstrates that elementary school students in a disadvantaged, high-risk community can learn important signs and symptoms of AD and retain them well for at least 3 months after a brief 3-hour curriculum. As hypothesized, symptoms included in the FLOW mnemonic and concepts highlighted in our song lyrics were those best retained over the learning sequence. These findings are very similar to HHS (Williams & Noble, 2008), supporting a role for our model in improving health literacy across several disease domains.

Health literacy, including perceptions of cognitive aging, could be unrealized barriers to diminishing the health disparity of AD. Interestingly, at baseline, most students associated forgetfulness with AD, but very few identified other common AD symptoms. Overcoming barriers to AD health literacy may be an important step toward improving early AD diagnosis in ethnic minorities, increasing awareness of potential risk reduction measures, and enhancing coping strategies for families with AD. However, no study has yet demonstrated the effects of improved dementia public awareness on these outcomes.

Introducing AD health concepts to such a young audience as that engaged in our program is important, given the likely high frequency of exposure of such children to grandparents with AD and others at risk. U.S. Census data from 2000 estimated that 46 million Americans were ages 60 and older (U.S. Census Bureau, 2008). Between 1990 and 2000, there was a 30% increase in the number of children living with their grandparents, with an estimated 5.7 million grandparents living with their grandchildren as of 2000 (Simmons & Dye, 2003). Among these grandparents living with grandchildren, 2.3 million are older than 60 years, including an estimated 1.4 million ages 60 to 69 years, 730,000 ages 70 to 79 years, and 200,000 ages 80 and over. These 2.3 million Americans living with grandchildren have an estimated 15% to 25% lifetime risk of developing dementia of any type and 10% to 20% lifetime risk of developing AD (Seshadri et al., 2006). Altogether these findings suggest that American children live with an estimated 345,000 to 575,000 grandparents likely to develop dementia and 230,000 to 460,000 grandparents likely to develop AD. Although our sample size is small, our study exceeded this estimate of close exposure to AD, with 24% reporting having a close friend or relative with AD. Given the close and frequent contact many young children have with their grandparents, educating young people about AD could represent a novel approach to improving timeliness and quality of care provided to AD patients, particularly among minority communities.

On the basis of our group’s prior experience, elementary school children in fourth through sixth grades represent an optimal time for receiving and retaining health education as well as delivery of health messages into the home (Williams, DeSorbo, Noble, & Gerin, 2012). At this age, children are developing their own health concepts, can understand simple health messaging, have sustained focus to engage material in our programs, and lack social barriers that begin to evolve in older groups, including teens. Nonetheless, delivery of our health education programming to older children, including teens, is worth pursuing. Work from our other programs suggests information is retained for upward of 15 months postintervention (Williams, Desorbo, Noble, Shaffer, et al., 2012) and anecdotally for at least 4 years.

Despite some compelling findings, our study has several limitations. We utilized a within-subjects comparison (quasi-experimental design) using baseline knowledge (and not a control group), limiting inference relative to the simple engagement with our staff versus program content, and we used a small convenience sample size from a single site. In our experience, schools are disinclined to disrupt regular academic hours for the purpose of enrolling their students into external programs without scholarly gain, even those with public health significance, unless they are part of school wellness goals or mandates. Although our HHS program was able to fulfill school wellness goals by providing information about nutrition and physical activity as part of a stroke risk reduction module, this may be more challenging for our AD education program. The school recruited for this study was part of our consortium of champion schools in which we test and conduct focus groups to inform our other hip-hop programs (regarding stroke and obesity), making recruitment straightforward but limiting generalizability.

The generalizability of the Old SCHOOL program to other ethnic groups or to suburban and rural areas remains uncertain. Our group chose hip-hop as an educational vehicle for our health education programs, including the one described here. Health initiatives that incorporate readily learned or familiar fast-paced music and dance activities have significant impact (Staum, 1993; Williams, Desorbo, Noble, Shaffer, et al., 2012; Williams & Noble, 2008) and could improve the potential for sustained learning (Williams, Desorbo, Noble, Shaffer, et al., 2012). Hip-hop is a music genre that strongly emphasizes rhyme and dance and is popular among diverse socioeconomic and ethnic groups (NielsenMedia, 2001). One noteworthy component of the songs used in our program, similar to many hip-hop songs, is inclusion of call and response, which can provide immediate reinforcement of key health concepts. Integrated rhyme and dance have been successfully used as educational tools in several non-health-oriented education programs (Capps, 2003; Garvin, 2006; Staum, 1993). Hip-hop has specifically been used as a vehicle for obesity prevention in African American preschoolers (Fitzgibbon et al., 2005) as well as in our stroke education model (Williams, DeSorbo, Noble, & Gerin, 2012; Williams, Desorbo, Noble, Shaffer, et al., 2012; Williams & Noble, 2008). The majority of central Harlem’s elementary school students are African American or Caribbean Hispanic. Given the ubiquitous nature of hip-hop in popular culture, and the success of our group’s other programs, it may be effective among diverse sociodemographic groups beyond those studied here. Our program has not yet been tested outside of Manhattan, New York City, although our group is currently exploring generalizability of our other hip-hop-themed programs to other communities, given hip-hop’s broad appeal.

We infer that the reason facial droop was frequently identified as a non-AD symptom in this study is related to these children’s experience with our HHS program and the stroke-related FAST (face, arm, speech, time to call 911) mnemonic. Localization of AD to the brain may also be confounded by our group’s focus on stroke and brain health education within consortium schools. Our study did not capture all AD symptoms; for this pilot, we opted to test knowledge of cardinal, early AD symptoms, particularly given our experience with classroom-related time constraint logistics and the attention span of our young audiences. Important safety considerations related to more advanced AD symptoms, such as wandering (included in FLOW), were taught and are planned to be tested in upcoming OSHH programs. For our follow-up work, we have also opted to modify our written mnemonic to FLOW² to capture both write and wander as distinct and important AD symptoms. In testing our mnemonic, a free-response question would be an optimal method of study but was infeasible, given study constraints. Although the multiple-choice question specifically asking the student to recall the FLOW mnemonic could simply test an overly simple set of responses, we principally included this question as a measure of the messaging (e.g., was it sufficiently included in the program?) and created the incorrect FLOW distracters to convey concepts of aging in a language understandable by this age group. The validity of this and other questions is a point of future study. Moreover, the ability of the FLOW mnemonic to improve knowledge was demonstrated indirectly using our other questions regarding AD symptom recognition and as shown in Figure 2.

Although we did not track individual data, absences following Day 1 could impact knowledge in the posttest sequence. Students absent on a given day but later tested would be expected to lower the effect of the program, given that they received less education. Students initially present and later absent could be associated with higher, lower, or no-change scores depending on their contribution to original testing. We studied group-level responses, which precludes analyses of the contributions of individuals to test responses; nonetheless, we had similar participation rates and follow-up (n = 68, although not necessarily the same students) compared to baseline (n = 75) out of 81 registered students. Thus we would not expect this relatively small degree of absenteeism to significantly change the overall study findings.

We did not use open-ended questions but did explore with several responders regarding family AD experiences. Anecdotally, of the 3 participants volunteering responses, 1 was a primary caregiver for a grandparent with AD. This child already participated with family members in cognitively stimulating activities in the home and was aware of safety precautions surrounding cooking.

As detailed above, this program focusing on AD knowledge follows our prior work involving a stroke education program delivered to similar groups of children. Findings from the stroke program, which we call “child-mediated health communication” (CMHC), demonstrate we can improve stroke recognition and response by educating children and can utilize stroke-educated children as conduits of stroke knowledge to adult caregivers in the homes of low-income residents (Williams, DeSorbo, Noble, & Gerin, 2012). This present study suggests we have successfully developed an AD-related cognitive construct similar to our initial stroke program findings that inspires students to learn neurologic health information (theory of reasoned action) as an important first step to developing a sense of mastery to educate the family unit (self-efficacy). Accordingly, using this model, we may also be able to improve AD recognition and responses of children, but this is yet to be studied. These are promising findings, and to our knowledge, no published studies exist beyond stroke evaluating the potential role of children in improving neurological health literacy of families, and no other targeted intergenerational dementia awareness programs have been published. Collectively, our findings suggest that CMHC merits further exploration as a potential delivery model for improving AD literacy of parents and grandparents of AD-educated children, shift cultural perceptions of AD to improve its acceptance, and reduce barriers to early diagnosis. Such a program could have additional relevance for early AD recognition should time-sensitive pharmacologic and healthy lifestyle risk-reduction measures be proven effective as disease-modifying strategies.

Footnotes

Acknowledgements

The authors made the following contributions: Drs. Noble and Williams and Ms. Hedmann, study concept and design; Dr. Noble and Ms. Hedmann, acquisition of data; Dr. Noble, data analysis; Drs. Noble and Williams and Ms. Hedmann, data interpretation; Drs. Noble and Williams and Ms. Hedmann, critical revision of the manuscript for important intellectual content; Dr. Noble, study supervision. The following persons contributed to study implementation but did not fulfill authorship criteria: Artie Green (wrote music, cowrote lyrics, conducted, performed “Go With the FLOW”); Adrian “Easy AD” Harris (study educator); Alexandra DeSorbo, MPH (research administrator); Saima Huq, MPH (study performance); and Bill Davis and Ian Ellis James (creation and production of the comic book).

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Creation of this song and comic was supported by an educational grant from the Friends of Harlem Hospital Center. Drs. Noble and Williams and Ms. Hedmann are supported for related work in Hip-Hop Stroke (R01 NS067443-01A1, PI Olajide Williams) from the National Institutes of Health/National Institute of Neurological Disorders and Stroke.

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