Perceptions of dementia among Latinos

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PERCEPTIONS OF DEMENTIA AMONG LATINOS

by

Carlos Alberto Rodriguez

A Thesis Presented to the
FACULTY OF THE USC GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
MASTER OF ARTS
(PSYCHOLOGY)

May 2011

Copyright 2011 Carlos Alberto Rodriguez
ii
Dedication

For my family, who provide me with guidance, support, and love in all of my

endeavors. All of my success is because of you.

iii
Acknowledgements

I am grateful for the continued guidance and support of Dr. Margaret Gatz, my

research advisor and mentor, who has been my strongest advocate in graduate school.

Special thanks are also given to Dr. Steven Lopez, who provided consultation at

numerous stages of this project. I also extend my gratitude to Dr. Sherry Span for

providing mentoring within and outside the realm of academia. I would like to

acknowledge the Senior Services Division of the International Institute of Los Angeles

for providing a welcoming site for the location of this study. Many thanks are also given

to the Latino Diabetes Association and the many local promotoras who aided in

participant recruitment. Most importantly, I thank all of the participants for their time.

This study was supported in part by a USC Provost’s Ph.D. Fellowship, and training

grants 5-T32-AG00037 (PI: Dr. Eileen Crimmins) and F31AG035534 from the National

Institute On Aging. The content is solely the responsibility of the author and does not

necessarily represent the official views of the National Institute On Aging or the National

Institutes of Health.
iv
Table of Contents

Dedication ii

Acknowledgements iii

List of Tables vi

Abstract vii

Chapter One: Introduction 1
Health Literacy 3
Dementia Perceptions 4
Research Questions 7

Chapter Two: Methods 10
Participants 10
Recruitment Procedures 10
Measures 13
Procedure 17
Data Analyses 19

Chapter Three: Results 22
Demographics 22
ADKS Results 23
Script 1 Focus Groups 26
Script 2 Focus Groups 32
Similarities and Differences Across Both Scripts 46

Chapter Four: Discussion 49
Latino Dementia Perceptions 49
Risk Indicators of Low Dementia Literacy 52
Limitations 55
Summary and Implications 57

References 60

v
Appendices 65
Appendix A: Alzheimer’s Disease Knowledge Scale and
Demographics Questionnaire: English Version 65
Appendix B: Alzheimer’s Disease Knowledge Scale and
Demographics Questionnaire: Spanish Version 71
Appendix C: Focus Group Script 1 77
Appendix D: Focus Group Script 2 (English Version) 79
Appendix E: Focus Group Script 3 (Spanish Version) 81
vi
List of Tables

Table 1: Ns, Means, Standard Deviations, and Range of Demographics
and Study Variables 22

Table 2: Alzheimer’s Disease Knowledge Scale Item Characteristics 24

Table 3: English Focus Groups 27

Table 4: Spanish Focus Groups 34

vii
Abstract
The current study examined knowledge and perceptions of dementia among a
convenience sample of 40 community-dwelling adult Latinos using the Alzheimer’s
Disease Knowledge Scale (ADKS) and focus group interviews asking questions
regarding the idioms, behavioral signs, etiology, risk and protective factors, help-seeking,
and available treatments for dementia. The current sample had poorer knowledge scores
on the ADKS than the standardization sample. Common themes from the qualitative data
included: the belief that dementia is a normal part of aging, a lack of knowledge of
specific treatments despite a recognition that seeking a medical diagnosis leads to the best
treatment, overestimation of reported risk and protective factors of dementia, and little
knowledge of the earliest signs of dementia. Participants also commonly described
dementia as a loss of memories, and placed a high value on the family participating in
dementia care. Risk indicators of low dementia literacy were low years of education,
Spanish language preference, and fewer years of residence in the U.S., suggesting
acculturation as an indicator of better dementia literacy among Latinos.
1
Chapter One: Introduction

Currently, Latinos make up the largest ethnic minority group in Southern
California (Southern California Association of Governments, 2008) and the nation (U.S.
Census Bureau, 2009b). In L.A. County, there are close to one million people over the
age of 65 (Los Angeles Almanac, 2008). Latinos currently comprise between 21%-29%
of this population, and this percentage is expected to increase 4% per decade. Based on
the Alzheimer’s Association’s (2010) state-by-state estimated prevalence rates of AD,
and the aforementioned proportions, it is estimated that there are currently over 135,000
people with AD in L.A. County, of whom 31,000 are Latino. Given the high prevalence
of vascular dementia among Latino populations, as of 2010 there are estimated to be
50,000 Latino individuals with some type of dementia living in L.A. County
Dementia is found disproportionately among Latinos in the U.S. and is rising.
Many attribute this increase, at least in part, to elevated rates of modifiable risk factors
among this population such as type II diabetes, obesity, and stroke (Alzheimer’s
Association, 2010; Perkins et al., 1997; Gurland et al., 1999; Tang et al., 2001;
Demirovic et al., 2003). Early diagnosis when dementia and other cognitive problems are
suspected can afford timely treatment of reversible conditions (Kennedy, 2000), or
slowing of the progression of certain diseases that may contribute to dementia symptoms
(Sano, 2003), and/or grant time to make major life plans. However, like other mental
health problems (Vega & Lopez, 2001), Latino families significantly delay seeking
medical help when a cognitive problem is evident, such that by the time an individual is
referred for a cognitive or memory problem, the person is very impaired. For example, in
2
their survey with caregivers of 65 cognitively impaired Hispanic older adults (68% of
whom met DSM-IV criteria for dementia), Ortiz and Fitten (2000) found that 50%
reported they had delayed or withheld diagnosis or treatment for 18 months to 5 years.
One fourth were said to have cognitive symptoms for 5 years or more before seeking a
medical diagnosis. Understanding what accounts for such delays will be critical for
developing means to address this help-seeking disparity.
In their own investigation of their participants’ perceptions of barriers to
healthcare access and utilization for their ill relative, Ortiz and Fitten (2000) found
personal beliefs, language proficiency, and economic status to be the most frequently
reported. Interestingly, 38% of caregivers reported personal beliefs as the most
significant healthcare barrier, including perceptions regarding illness, life attitudes,
values, beliefs about health, and the utility of medicine. These beliefs were found to
influence healthcare use above and beyond age, acculturation, and education. In other
work with older adults, Ayalon and Areán (2004) found Latinos had less accurate
knowledge regarding AD than non-Hispanic Whites. These data suggest knowledge and
perceptions of dementia among Latinos may be an important influence on medical
decision-making and health behaviors.
Past research has documented that disease perceptions are influenced by culture
(Cameron & Leventhal, 2003), and that these perceptions are in turn related to help-
seeking behavior (Landrine & Klonoff, 2001). The aim of this study was to identify what
knowledge, attitudes, and beliefs exist among Latino community residents regarding
dementia that may delay help-seeking. Future efforts to improve health literacy among
3
Latinos may then specifically tailor health messages to target those common
misperceptions of dementia identified through research. The current investigation
assessed knowledge and perceptions of dementia among Spanish- and English-speaking
adult Latinos living in Los Angeles through the use of a standard Alzheimer’s disease
(AD) knowledge test and focus groups led by a bilingual facilitator.
Health Literacy
In 2004, the Alzheimer’s Association issued a report calling on Congress and the
National Institutes of Health to allocate resources to support research that (a) aims to
understand why Latinos delay seeking diagnosis and underutilize health services for
dementia, and that (b) identifies approaches attuned to cultural and linguistic needs that
overcome service barriers (Alzheimer’s Association, 2004). The current study targeted
health knowledge among Latinos which is one component of health literacy (U.S.
Department of Health and Human Services; USDHHS, 2000). Health literacy is defined
as the degree to which community members access, process, and comprehend health
information and services to make health decisions, such as help-seeking or engaging in
preventive health behaviors. Health knowledge becomes integral to such health decisions
in this conceptual framework, for in its absence it becomes difficult to actively address
the presenting health concerns or decide on what behaviors may prevent or delay action
on such health concerns. Among the populations suggested by the Institute of Medicine
(IOM; 2004) to have limited health literacy skills were the elderly, minority populations,
immigrant populations, and low-income individuals. Additionally, Smith, Dixon,
4
Trevina, Nutbeam, and McCaffery (2009) reported that participants in Australia with
lower education scored significantly lower on a measure of health literacy.
Some or all of these risk indicators may be underlying the previous findings that
Latinos have less accurate knowledge regarding AD than non-Hispanic White
participants. For instance, level of education partially accounted for differences in AD
knowledge between Latino and non-Hispanic White older adults (Ayalon & Areán,
2004). Similarly, Gray, Jimenez, Cucciare, Tong, and Gallagher-Thompson (2009)
reported that Hispanic/Latina female caregivers had poorer scores on a survey of AD
knowledge than their non-Hispanic White participants, noting significantly lower income
and lower years of education in the Hispanic/Latina caregivers. Other subgroups who
may have low dementia literacy are those with a lack of access to health education
materials or minimal opportunity to observe someone close to them experience dementia.
As an example, a previous report documented a positive correlation between AD
experience and AD knowledge among a sample with varying levels of experience with
AD (Carpenter, Balsis, Otilingam, Hanson, & Gatz, 2009). Identifying which subgroups
of Latinos are most at risk for having low dementia literacy may help to focus public
health messages to the targets of greatest need.
Dementia Perceptions
In regards to perceptions of dementia among Latinos, the majority of research to
date has focused on small samples of identified families with AD, interviewing
caregivers of the ill relative after they have been diagnosed and thus already introduced to
some material regarding AD. One issue that remains unclear in this work is what terms
5
are used in this community to refer to dementia. Some researchers nearly two decades
ago highlighted a strong stigma among Latino cultures that the older adult with dementia
symptoms has “lost his mind” or “gone crazy” (Henderson & Gutierrez-Mayka, 1992),
leading to the use of the idiom “locura” [craziness] to refer to this condition. In contrast,
three more recent studies converged on the finding that many Latino caregivers of
persons with AD share the perception that symptoms of significant memory loss,
confusion, and behavior changes are a normal part of aging and not a sign of illness
requiring medical intervention (Ortiz & Fitten, 2000; Gelman, 2009; Gray et al., 2009).
Such a perception may explain a portion of diagnosis delay.
For those Latino caregivers who finally do consider their relative’s symptoms
might indicate a problem, diagnosis delay may be partially explained by a lack of
knowledge about AD and about where to seek appropriate specialized diagnostic and
treatment services in the community (Gelman, 2009; Gelman, 2010). Others have
concluded from knowledge surveys of AD that fewer Hispanic/Latina caregivers than
non-Hispanic White caregivers know AD is not currently preventable and that most cases
of AD are not genetically determined (Gray et al., 2009).
Some notable exceptions to the aforementioned work with Latino caregivers are
relevant to the current discussion. Three primarily qualitative studies documented
knowledge and beliefs about cognitive health among community-dwelling Hispanic older
adults. While the current study is focused more specifically on adult Latino perceptions
of dementia, these three studies offer insight into the views of Latinos regarding what is
considered healthy cognitive aging and perceived means of achieving this end. Laditka et
6
al. (2009) used data from the multisite Healthy Brain Project, which is considered to be
one of the largest of such undertakings, and reported findings on focus groups conducted
in English with 396 older adults living in nine states, 95 African American, 34 American
Indian, 36 Chinese, 26 Vietnamese, 195 non-Hispanic White, but only 10 Hispanic
participants. The study researchers concluded that across their sample, all racial/ethnic
groups reported that having a positive mental outlook and being socially involved in
church, community, and volunteer settings are important for aging well. Using the same
focus group data from the Healthy Brain Project, Wilcox et al. (2009) reported that
Hispanic, African-American, and America Indian community-dwelling older adults less
clearly stated the links between physical activity and diet to brain health than other
racial/ethnic groups. Hispanics and American-Indians made fewer comments about
physical activity, diet, and brain health than other groups. Given the small sample of
English-speaking Hispanic participants, however, the results must be considered a
preliminary view of Latino perceptions of cognitive aging.
In contrast to the previous studies on participants from the Healthy Brain Project,
Sharkey, Sharf, and John (2009) reported on the perceptions of cognitive health among
33 Mexican-American Spanish-speaking, lower-income older adults living in colonia
areas along the Lower Rio Grande Valley of Texas, 85% of whom had less than a high
school education. A common theme expressed included a description of aging well as
“staying straight in the mind”, which participants later largely characterized as having an
intact memory and remaining independent. Ways of maintaining a good memory
included the use of distraction to avoid dwelling on problems or having “bad thoughts”.
7
Means of distractions included singing, embroidery, playing games, listening to music,
having pets, and reading. The authors concluded that the differences in themes about
cognitive health identified within this study and the ones made from the Healthy Brain
Project point to the heterogeneity of the Latino population in the U.S. and the importance
of understanding the impact of language, income, education, and degree of assimilation.
Research Questions
The overall goal of this project was to identify knowledge and perceptions about
dementia held among Los Angeles Latino community residents. Since most previous
studies had focused on knowledge and perceptions of AD among caregivers or older
adults, we targeted our recruitment efforts on Latino adults of all ages. An advantage of
this approach was that we observed responses from persons who may potentially become
caregivers of someone with dementia, and thus had not already learned about dementia
after entering the healthcare system. Results from this study may aid the development of
culturally-informed health communication tools for educating adult Latino families about
dementia symptoms, treatment, and health behaviors that may delay and reduce the onset
and impact of dementia. The eventual public health relevance is to increase early
assessment of potential symptoms of dementia among Latinos so that dementia treatment
is not further delayed, leading to improved quality of life for the dementia patient and
reduced family burden. Secondly, given the established prevalence of modifiable vascular
risk factors among Latinos, another eventual public health goal is to improve individual
health habits that might eventually lower risk for dementia onset, through increasing
awareness of the relationship of these risk factors to dementia.
8
The purpose of this study was to identify common myths about dementia through
a psychometrically sound standard instrument for assessing AD knowledge (Carpenter et
al., 2009), and through semi-structured focus groups led by a bilingual Latino facilitator.
Two main sets of analyses were conducted: one based on a general survey of AD
knowledge and demographic variables, and the second on the qualitative data gathered
through interviews and focus groups.
AD Knowledge Survey. As suggested by the IOM (2004) conclusions about
health literacy, those participants with lower education and income levels were expected
to have less knowledge about AD than participants with higher education and income
levels. Furthermore, participants who have greater experience with AD, either through
their access to health education materials or because they have had the chance to observe
someone close to them experience dementia, were predicted to have more accurate
knowledge of AD than those with less experience with AD. In addition, specific items
were examined with respect to the most common errors.
Focus groups. The aim of the focus groups and interviews was to identify cultural
idioms and perceptions of dementia symptoms, diagnosis, treatment, help-seeking, risk
and protective factors, and research participation. Common misperceptions of AD and
related disorders expected to emerge from Latino adults included dementia as a normal
part of aging and dementia as a sign of craziness. Genetics was expected to be the cause
of dementia most often reported by participants. In terms of ways to reduce the risk of
dementia, being socially active and having a positive outlook or using various means of
9
distraction to avoid negative thoughts were predicted to be more common, with less
emphasis on physical activity or diet.
Any identified misperception can be used constructively by the future health
education campaigns. For instance, if believing that aluminum foils leads to dementia
turns out to be a common misperception of dementia in the focus group participants, this
misperception can be addressed directly by one of the health messages in a future health
communication tool.
10
Chapter Two: Methods
Participants

The target population was comprised of adult Latinos in the Los Angeles area and
their families. Inclusion criteria were as follows: age 18 and over, of Hispanic/Latino
race/ethnicity (self-identified), could speak English and/or Spanish, and had the ability to
travel to the Senior Services Division of the International Institute of Los Angeles in East
Los Angeles. Forty individuals participated; 33 completed surveys and interviews in
Spanish, and another 7 completed the study materials and procedures in English. Most
participants were female (N = 29), and about half were born in Mexico (N = 22), while
the remaining participants were born in the U.S. (N = 8), El Salvador (N = 6), Guatemala
(N =2), Cuba (N =1), and Peru (N =1). The 32 participants who responded to the question
of primary lifetime occupation were grouped into the major groups of the Standard
Occupational Classification System (U.S. Department of Labor, 2010). Three were
unemployed, 1 in business and financial operations, 5 in sales and related occupations, 3
in office and administrative support, 4 in construction, 3 personal care and service
workers, 1 in avionics maintenance, 3 in the field of education, 3 in community and
social service, 2 in food preparation and serving related occupations, 1 in engineering,
and 3 in production.
Recruitment Procedures

Seven English-speaking and five Spanish-speaking participants were recruited
from local community organizations and clinics that had at least some documented
experience in organizing and providing health information to adult Latinos in the Greater
11
Los Angeles area. These include the Abuelitos of Boyle Heights, White Memorial
Medical Center, the Southern California Latino Diabetes Association, Centro Maravilla
Services Center, Clinica Romero, the International Institute of Los Angeles (Senior
Services Division), and the Greater East Los Angeles Alzheimer’s Disease Association,
and the Latina Client Coalition. Project directors of such community organizations and
clinics were contacted by phone, given a description of the study, and asked permission
to distribute recruitment flyers among their clientele, as well as to read a verbal
recruitment script at workshops and community meetings of participating organizations
and clinics.
Once permission had been granted, recruitment flyers were mailed to the
participating community organizations and clinics and posted in common areas of their
facilities. It was anticipated that flyers would be passed along from one person to another
and that this would increase its distribution within the community. Therefore, participants
also included Latinos with no association to the partnering community organizations and
clinics contacted for recruitment purposes. Recruitment flyers contained a brief
description of the study, a statement describing compensation for participating, and a
phone number to call for more information. In addition, the PI read a verbal recruitment
script to potential participants in person at community meetings at the above locations in
an effort to increase the dissemination of study information. Those persons interested in
hearing this information again or participating in the study were given the recruitment
flyers with the PI's contact number.

12
Twenty-eight additional Spanish-speaking participants were recruited through the
assistance of local promotoras. Promotoras are lay health workers who serve as liaisons
between communities and health, human, and social service organizations, typically
providing outreach and education to members of their community. The promotoras aided
in selecting and attending various local health fairs targeting low-income Latinos, and
read the verbal recruitment script and distributed the recruitment flyers to interested
parties.
Once potential participants called the given number, a verbal telephone script was
read to them. Subsequently, interested callers received a date, time, and location to read
the information sheet and participate in the study if they chose to do so. Of the 57
individuals who called for study information, 17 did not participate in the study
reportedly due to conflicting schedules or lack of transportation. As compensation for
participation, volunteers were given $20 Target gift cards, and were provided answers to
questions they had about dementia care and services at the end of their participation in
the study. Funding for gift cards came through USC’s Alzheimer Disease Research
Center.
Project directors of the local community organizations and clinics were informed
that all participation was voluntary and would not influence their current or future
relations with USC. Likewise, clientele of the participating community organizations and
clinics were instructed by the researcher that all participation was voluntary and would
not influence their relationship with USC or their respective organization/clinic.

13
Multiple focus group sizes between 8 and 12 persons tend to allow enough
diversity of thought to provide saturation of data, yet are also manageable in allowing
everyone to contribute to the discussion (Krueger, 1988). Therefore, efforts were made to
schedule focus groups of this size. Four focus groups were held in Spanish with 6-9
participants each. Four to five focus groups of this size are usually sufficient to provide
data that can converge on similar themes (Krueger, 1988). Furthermore, a similar number
of groups were used in the development of health communication tools about diabetes
targeting adult Latinos (Unger, Molina, & Baron, 2009). The other 12 participants were
either interviewed individually or in groups of up to 3 persons.
Measures

All measures and study materials described in the next section were translated
into Spanish using back-translation procedures. All content was originally developed in
English, then translated into Spanish by a bicultural, bilingual professional translator,
focusing on a conceptual rather than literal (i.e., word for word) translation. Next, the
bilingual PI reviewed the translation and discussed noticeable departures from the
original items’ conceptual meaning with the original translator. Afterwards, a third
independent bilingual professional translator made the Spanish to English translation.
Finally, the bilingual PI reviewed the back translation for inconsistencies with the
original English version, and a conference with all three translators was held until a
consensus was reached, with all final decisions made by the PI. Disagreement in
translation occurred infrequently, and when it did occur was easily resolved.

14
Demographics and Background Information. Each survey packet included a set of
demographic and background questions about gender, age, race/ethnicity, socioeconomic
status (years of education, primary occupation, household income and size), country of
origin and length of residence in U.S., and language fluency (see Appendix A). The
Spanish translated version of this survey packet may be seen in Appendix B. Participants
provided self-ratings of language fluency separately for English and Spanish on six
domains of language fluency ranging from 1 (very poorly) to 4 (very well). The six
domains assessed per language were speaking, reading, understanding T.V. programs,
understanding radio programs, writing, and understanding music, drawn from the
language proficiency subscale of Marin and Gamba’s (1996) Bidimensional
Acculturation Scale. Total language fluency per language was calculated by adding
scores for each domain of language fluency, allowing a total range of 1-24. Cronbach’s
α’s when using these items as summed English and Spanish scales were 0.98 and 0.94,
respectively.
Respondents also completed a series of questions to assess experience with AD
and dementia used in Carpenter et al. (2009). These questions asked whether family
members had AD or a related disorder, whether respondents were currently or previously
a caregiver for someone with Alzheimer’s disease or a related disorder, whether they had
ever attended a support group or educational program related to Alzheimer’s disease or a
related disorder, and whether their job or volunteer responsibilities involved working
with people who have Alzheimer’s disease or a related disorder. Experience with AD and
related disorders was calculated by summating items 23-30 of the demographic
15
questionnaire for a possible range of 0-27 points; higher scores indicate more experience
(see Appendix A). Cronbach’s α when using these items as a summed scale was 0.61,
indicating marginal internal consistency. Respondents also provided a self-rating of
knowledge about AD and related disorders, on a scale from 1 (I know nothing at all) to
10 (I am very knowledgeable).
AD Knowledge Scale. Participants were administered the AD Knowledge Scale
(ADKS; Carpenter et al., 2009; see Appendix A). This 30-item True/False scale has
demonstrated adequate reliability (test–retest, internal consistency) and validity
(predictive, concurrent, and convergent) in a large sample (N =765) of English-speaking
health care professionals (research/service provision), senior center staff, caregivers of
people w/ dementia, community-dwelling older adults with no cognitive impairment, and
college students. Total score for the ADKS ranges from 0-30, with higher scores
indicating greater AD knowledge. The interested reader can find greater detail of the
psychometric properties of the scale in Carpenter et al. (2009). It is the most up-to-date
knowledge test of AD for laypersons available, and takes only 5-10 minutes to
administer. The items of the ADKS (2009) survey risk factors, symptoms, treatment, and
effects of AD.
Focus Group Script. A structured script was designed and then followed by a
bilingual Latino facilitator. Focus groups were asked to share other names for AD and
related memory and thinking disorders. Following this elicitation of idioms for dementia,
further questions were asked in reference to dementia using participants’ own language
for describing dementia. These latter questions asked about what they know and believe
16
regarding dementia symptoms, assessment, etiology, treatment, prognosis, risk and
protective factors, help-seeking behaviors, and attitude toward dementia research. These
domains of knowledge and beliefs have been assessed in past studies of the disease
perceptions amongst Latinos and other ethnic minority populations (e.g., Unger et al.,
2008; Otilingam & Gatz, 2005; Jones, Chow, & Gatz, 2006). The questions in the focus
group script were pilot tested on two groups of adult participants, one English-speaking
group of 5 college students of mixed race-ethnicity, and one Spanish-speaking group of 6
Latino individuals. Subsequently, the script was revised for content based on participants’
feedback (Focus Group Script 1; see Appendix C). Data from participants in the pilot
groups are not included in the final analyses.
Following collection of the focus group data with 7 English-speaking participants,
a preliminary analysis resulted in the focus group script being augmented to reduce
cueing and to elicit respondents’ automatically generated beliefs and meanings
(Alexander & Becker, 1978). The next 33 participants were all Spanish-speaking. In the
revised scripts, the facilitator began by reading a vignette to participants describing a
hypothetical older adult relative with symptoms of early dementia and asked what they
believed was happening to this relative (Otilingam & Gatz, 2005). Participants then
answered the questions regarding dementia idioms, presentation, etiology, help-seeking,
treatment, and prevention referring to their characterization of this vignette (Focus Group
Script 2; see Appendix D for English version and Appendix E for Spanish version).
17
Procedure
The focus groups were held in a classroom setting at the International Institute of
Los Angeles, Senior Services Division. Four participants were surveyed and interviewed
in groups of 2 persons in English. Another three participants were surveyed and
interviewed individually in English. The last 33 participants were surveyed and
interviewed in Spanish in six groups of 9, 8, 6, 5, 3, and 2 individuals. Every participant
completed the survey materials and interviews in their self-reported language of
preference. Participants were first administered the ADKS (Carpenter et al., 2009),
followed by the demographics questionnaire, finishing both in approximately 15 minutes.
Two individuals reported being unable to read. The group facilitator read aloud the
survey materials to them individually in a separate room. Following the survey, the focus
group script was read to participants by the group facilitator, recording the entirety of the
discussions using a digital audio recorder. The focus group discussions were split into
two half-hour sessions, with a five-minute break in which refreshments were provided.
The entire session lasted approximately 50 to 90 minutes, depending on the number of
individuals participating.
Audio-recorded data gathered during the focus groups were transcribed by
undergraduate research assistants. The resulting transcripts were then coded into
predicted and emerging thematic categories to identify themes in dementia perceptions. A
codebook designed by the PI was used to guide the research assistants in coding the
qualitative data using content analysis methodology, in which inferences are drawn from
the text by counting references to the concepts of greatest interest (Rosenthal & Rosnow,
18
1991). It is an iterative process of developing broad categories from the responses using
independent coders. This codebook essentially provides a variety of categories of
responses to each question asked in the interview. These categories were derived from
predicted answers to interview questions, as well as by review and summary of two of the
pilot focus group interviews (results not included in final analyses).
Research assistants were trained to code interview answers into one or more
categories provided in the codebook, as well as to recognize unexpected categories of
responses and add such new categories into the codebook. Every interview was coded
independently by two research assistants, so as to provide data on inter-coder agreement.
Owing to the differences between Focus Group Script 1 and Focus Groups Script 2,
which happened to correspond to the individuals participating in English and those
participating in Spanish, the English and Spanish focus group data were analyzed
separately in three waves of coding. In the first wave, two raters independently coded
responses from all 40 participants into one or more categories from the codebook. When
a rater decided that a response did not match well into a provided category, an additional
category was added to the dataset by that rater. After the first wave of coding, the PI
augmented the codebook so that all newly identified categories could be used by both
raters during the second wave of coding. Categories that seemed redundant were
collapsed into one category at the PI’s discretion. After the second wave of coding of all
40 participants’ data, a third rater identified only those instances where the first two raters
disagreed on the assignment of a response to a particular category and then classified that
19
response to a category to reach a consensus. No new categories were added in the third
wave.
Data Analyses
Descriptive statistics of demographics and ADKS scores were generated to
determine the relative frequencies of correct items and participant characteristics.
Cronbach’s α of the total sample and of those completing the ADKS in Spanish were also
generated. In addition, item-total correlations and Cronbach’s α if the item were to be
deleted were calculated.
An independent samples t-test compared mean total score on the ADKS between
those completing the knowledge test in English and those who completed it in Spanish, as
well as experience with AD between English-speaking and Spanish-speaking
participants. A one-sample t-test compared the mean ADKS total score of the current
sample to that of the lowest performing group in the Carpenter et al. (2009) study. We
also measured the simple correlations between self-rated confidence in AD knowledge
and general AD knowledge measured by the ADKS, self-rated knowledge confidence in
AD knowledge and years of education, and years of education and experience with AD.
In order to test hypothesis I, zero-order correlations were conducted between the
total number of items correct on the ADKS (representing general AD knowledge) and
years of education and experience with AD. The low response rate of the household
income question (N = 18) precluded an adequate statistical test on the variance shared
between income and AD knowledge. Income and education were not significantly
correlated, r = 0.20, p = 0.43, nor were income and AD knowledge, r = -0.18, p = 0.47;
20
again, possibly as a result of having a small N. Therefore, only education was used in the
primary analysis.
As the definition of experience with AD is composed of a combined score from
multiple experience items, we also wished to model experience with AD in the manner
used in previous work (Carpenter et al., 2009). This was done by examining differences
in ADKS total scores by experience with AD separately for 4 different types of
experience corresponding to demographics questionnaire items 27-30. Four separate
independent samples t-tests were used for this purpose.
Separate tables for Focus Group Script 1 (Table 3) and Focus Group Script 2
(Table 4) (corresponding to English- and Spanish-speaking participants, respectively)
provide the data codes that resulted from the three waves of coding. If an individual
provided more than one response, all were coded. For each question asked, the number of
persons providing codable responses, and the total number of codable responses are
presented based upon the third and final wave of coding. Persons with codable responses
were considered to be those who were asked a particular question during their focus
group and provided any answer that was relevant to the current discussion. The main
results are presented as the proportion of responses coded as a particular category to the
total number of codable responses for each question, shown as percentages. Finally,
indices of inter-rater agreement are depicted for the coding of each question based upon
the data generated in the second wave of coding.
Inter-rater agreement for each question was calculated by summating across
participants: the total number of coding categories agreed upon by the two original raters,
21
the total number of coding categories endorsed by the first but not by the second rater, the
total number of coded categories endorsed by the second rater but not by the first rater,
and the total number of instances implicitly agreed upon by both raters where a category
was not endorsed. These values were entered into an online calculator (National Institute
of Water and Atmospheric Research, 2008) to obtain a Cohen’s kappa (Cohen, 1960).
Values for Cohen’s kappa can range from 0 to 1, and although Bakeman, Quera,
McArthur, and Robinson (1997) point out that no one value of kappa can be accepted as
adequate, values closer to 1 are generally thought of indicating adequate agreement.
Landis and Koch (1977) provided guidelines for interpreting values of Cohen’s kappa as
0–0.20 as slight, 0.21–0.40 as fair, 0.41–0.60 as moderate, 0.61–0.80 as substantial, and
0.81–1.00 as almost perfect agreement.
Finally, correspondence between common themes found in the qualitative data
and predicted themes was considered in terms of the relative frequency of responses.
Observing that the common perceptions of dementia that emerge from the focus groups
were different from the themes that were expected to emerge challenge predictions
regarding dementia beliefs and perceptions based on prior studies.
22
Chapter Three: Results
Demographics
Table 1 provides means, standard deviations, ranges, and the number of
respondents providing answers for each demographic and study variable of the whole
sample. Self-rated confidence in AD knowledge was not significantly correlated with
general AD knowledge, r = 0.16, p = 0.31, nor with years of education, r = 0.13, p = 0.43.
However, self-rated confidence in AD knowledge was significantly correlated with
experience with AD, r = 0.48, p < 0.05. Years of education and experience with AD were
positively correlated, r = 0.33, p < 0.05.
Table 1: Ns, Means, Standard Deviations, and Range of Demographics and Study
Variables
Variable N Mean Stand. dev. Range

Age (in years) 40 47.75 14.71 18 - 78
English Fluency 29 13.38 5.56 6 - 24
Spanish Fluency 29 21.97 3.43 11 - 24
Education (in years) 38 9.63 5.45 0 - 20
Annual Household 18 20,450 18,009.90 800 - 55,000
Income (in dollars)
Household Size 26 3.65 1.44 2 - 6
Age of Immigration to U.S. 31 27.13 12.24 4 - 49
Length of U.S. Residence 40 25.45 16.98 2 - 78
AD Knowledge confidence 40 4.58 1.95 1 - 8
AD Experience 39 3.38 1.98 0 - 9
Total AD Knowledge 40 17.63 3.44 10 – 24

23
Comparisons were made between individuals participating in English and Spanish
in terms of age, gender, years of education, and length of U.S. residence using 4
independent samples t-tests, revealing only significant differences in years of education
and length of U.S. residence. English-speaking participants had higher mean years of
education (M = 13.86, SD = 2.19) than Spanish-speaking participants (M = 8.68, SD =
5.53), t (25.20) = 4.01, p < 0.01. English-speaking participants had lived in the U.S.
longer (M = 46.57, SD = 22.48) than Spanish-speaking participants (M = 20.97, SD =
11.75), t (6.71) = 2.93, p < 0.05.
ADKS Results
The whole sample’s responses to the ADKS provided a Cronbach’s α of 0.47,
while among those completing the ADKS in Spanish the Cronbach’s α was 0.28. Item-
total correlations and Cronbach’s α if the item were to be deleted are presented in Table 2
for the total sample. On average, the sample correctly answered 17.6 items out of 30 (SD
= 3.44). The distribution of correct answers on the ADKS appeared normal: skewness
was -0.14, SE = 0.37, and kurtosis was -0.14, SE = 0.73.
Carpenter et al. (2009) reported mean number of items correct from
administration of the 30-item ADKS to 484 undergraduates, 89 community-dwelling
older adults with no cognitive impairment, 61 senior center staff, 54 dementia caregivers,
and 75 dementia professionals. In comparison to these groups, the current sample
performed lower than the senior center staff (M = 20.15, SD = 4.10), who were the lowest
performing group in the Carpenter et al. (2009) study, t (39) = -4.64, p < 0.01.

24
Table 2: Alzheimer’s Disease Knowledge Scale Item Characteristics

Item # Item-total Alpha if item % Correct
correlation dropped

ADKS_1 0.33 0.43 60.00
ADKS_2 0.20 0.45 32.50
ADKS_3 0.20 0.45 40.00
ADKS_4 0.12 0.47 85.00
ADKS_5 0.30 0.44 72.50
ADKS_6 0.30 0.45 10.00
ADKS_7 0.29 0.44 70.00
ADKS_8 0.19 0.45 60.00
ADKS_9 0.30 0.44 75.00
ADKS_10 0.19 0.45 50.00
ADKS_11 -0.10 0.50 55.00
ADKS_12 -0.01 0.48 77.50
ADKS_13 -0.31 0.53 55.00
ADKS_14 0.08 0.47 70.00
ADKS_15 -0.15 0.51 50.00
ADKS_16 0.08 0.47 22.50
ADKS_17 0.00 0.48 90.00
ADKS_18 0.10 0.47 35.00
ADKS_19 0.37 0.42 55.00
ADKS_20 0.04 0.48 65.00
ADKS_21 0.36 0.43 70.00
ADKS_22 -0.12 0.50 57.50
ADKS_23 0.21 0.45 52.50
ADKS_24 0.23 0.45 60.00
ADKS_25 0.30 0.43 55.00
ADKS_26 0.18 0.46 37.50
ADKS_27 0.22 0.45 67.50
ADKS_28 0.10 0.47 77.50
ADKS_29 -0.07 0.49 85.00
ADKS_30 -0.26 0.52 70.00

There were 6 items where less than half of the respondents answered correctly.
Three related to risk factors for AD, where respondents over-estimated the role of
25
mentalexercise while under-estimating the role of vascular risk factors. Two more items
with few correct answers concerned caregiving issues, in particular, appreciation of the
fact that decline in AD is gradual, and it is important to encourage as much independence
as the person with dementia can manage. The final item with less than 50% correct
answers concerned life expectancy after AD onset.
An independent samples t-test revealed that those completing the ADKS in
English (M = 22.00; SD = 1.63) answered more items correctly than those who completed
it in Spanish (M = 16.70; SD = 2.97), t (38) = 4.54, p < 0.01. There was no significant
difference in English (M = 1.57, SD = 0.79) and Spanish participants (M = 1.72, SD =
1.37) in terms of experience with AD, t (37) = -0.27, p = 0.79. Zero-order correlations
revealed that only years of education (r = 0.38, p < 0.05) and not experience with AD
(r = 0.23, p = 0.15) was significantly correlated with general AD knowledge on the
ADKS.
Finally, we examined the hypothesis that more experience with AD is related to
greater AD knowledge in an alternative way by looking at each experience item
separately. However, we found no significant differences in general AD knowledge at an
α = 0.05 among those who had attended an AD support group or not, t (37)= -0.52, those
attending a class or education program on AD or not, t (37)= -0.66, those whose paid job
involved working with people with AD or not, t (38) = -1.22, or those who volunteer with
people with AD or do not, t (38) = -0.58.
26
Script 1 Focus Groups
Data from the seven participants in the English-speaking focus groups using
Script 1 can be seen in Table 3. Cohen’s kappa ranged from 0.67 to 1.00, indicating
overall adequate agreement between raters. Participants labeled AD and related disorders
as a loss of memory, dementia, and AD. These participants highlighted getting lost easily,
difficulties in speaking and speech comprehension, confusion, and having to be treated
like a baby (or a lack of independence) as indicators of someone with dementia.
Participants reported someone acting as a different person than before or acting
aggressively as features unique to dementia and not normal aging, while others believed
there was not much of a difference between the two.
Participants mostly believed that other than seeing some type of medical specialist
if early symptoms are noticed, not much can be done to reduce the risk of dementia
because it is caused by genetics. Others reported simply not knowing of the causes or risk
factors of dementia. Only a few noted diet and emotional support from others as possible
protective factors against dementia. These participants described seeking a medical
diagnosis or researching the internet in order to determine what is the best treatment for
someone with early symptoms of dementia. Most responded not knowing of any specific
medical treatments available for dementia, other than guessing “perhaps medications that
may slow down the damage”. Participants emphasized that the family be involved in care
for as long as possible, making the person as comfortable as can be.
When asked how they thought more people from the Latino community could be
encouraged to participate in research studies about dementia, participants suggested
27
teaching the community about dementia and to advertise in Spanish-speaking media (e.g.,
T.V., radio) and community centers (e.g., nutritional centers, health centers, recreational
centers, church).
Table 3: English Focus Groups
Question and percentage in response N of people w/ N of codable Kappa
category codable response responses

1. What words have you or others used 7 14 0.86
to refer to such problems?

Alzheimer’s Disease (14.3%)

Dementia (21.4%)

Losing their minds (7.1%)

Loss of memory (28.6%)

Senility/becoming senile (7.1%)

Forgetfulness (7.1%)

The person is not all there (7.1%)

None (7.1%)

2. How might someone with dementia 7 21 0.80
act differently from someone without
this problem?

Get lost easily (9.5%)

They become aggressive (4.8%)

They ask for questions to be repeated (4.8%)

They seem like they’re not communicating (4.8%)

They’re in a world of their own (4.8%)

They grasp for understanding (9.5%)

They get confused (9.5%)

They forget things (4.8%)

Note. Seven English-speaking participants answered interview questions. Percentages are calculated by
dividing the number of participant responses falling within a category by the total number of codable
responses given.
28
Table 3 (Continued)
Question and percentage in response N of people w/ N of codable Kappa
category codable response responses

There is a disconnect when you communicate with them (4.8%)

They lose track of what they’re doing or saying (9.5%)

They confuse current events with past ones (4.8%)

They have to be treated like a baby- can’t use the restroom or walk alone (9.5%)

Misplace things (4.8%)

Forget newly met people quickly (4.8%)

3. How is this different from changes in 7 11 0.85
memory or thinking that you believe are
normal or to be expected as a person grows
older? [In dementia]:

They don’t talk much (9.1%)

They become aggressive (18.2%)

They’re not the same person as they were (45.5%)

There isn’t too much of a difference between normal aging and dementia (18.2%)

Memory problems are much worse in dementia (9.1%)

4. What are the differences between 1 2 1.00
Alzheimer’s and dementia?

Dementia refers to going crazy, and Alzheimer’s refers to memory loss (50%)

Alzheimer’s is a more specific memory condition (50%)

5. What percentage of people have dementia? 7 7 n/a

0-25% (42.9%)

26-50% (42.9%)

55% (14.3%)

6. If people were to live long enough, would 7 7 1.00
everyone develop dementia?

Yes (57.1%)
Note. Seven English-speaking participants answered interview questions. Percentages are calculated by
dividing the number of participant responses falling within a category by the total number of codable
responses given.
29
Table 3 (Continued)
Question and percentage in response N of people w/ N of codable Kappa
codable response responses

No (28.6%)

I don’t know (14.3%)

7. What causes dementia? 7 10 1.00

Eating the wrong things (10%)

Genes (30%)

Don’t know (30%)

The highways that transfer information get severed by some process (10%)

Drug, alcohol, tobacco use (10%)

Emotional instability throughout life (10%)

8. Why do some people have dementia and 2 4 1.00
others don’t?

Eating the wrong things (25%)

Genes (25%)

Don’t know (25%)

Chemicals/toxins possibly in the air (25%)

9. What would you do if one of your family 7 11 1.00
members started to behave like this?

Seek medical attention (63.6%);

Research the problem (18.2%)

Alternative medicine (9.1%)

Keep it at a certain level so it doesn’t get worse (9.1%)
Note. Seven English-speaking participants answered interview questions. Percentages are calculated by
dividing the number of participant responses falling within a category by the total number of codable
responses given.

30
Table 3 (Continued)
Question and percentage in response N of people w/ N of codable Kappa
codable response responses

10. Where would you turn for help first if you 3 4 1.00
thought a family member might have
dementia?

Seek medical attention (50%)

Research the problem (50%)

11. What are the benefits of having a doctor 7 7 0.84
determine whether a family member has
dementia?

If it’s not dementia, it might be reversible (14.3%)

They might know how to slow it down (14.3%)

No benefit (14.3%)

Knowing what the problem is leads to the best care (57.1%)

12. What ways are available to help someone 4 8 1.00
with dementia?

Medications that slow down the damage (12.5%)

Medications that help control risky or aggressive behaviors (12.5%)

Don’t know (37.5%)

Medications that helps with anxiety (12.5%)

Nursing facilities (12.5%)

Memory aids (12.5%)

13. What treatments exist to deal with 6 9 1.00
dementia?

Medications that slow down the damage (33.3%)

Medications that help control/risky aggressive behavior (11.1%)
Note. Seven English-speaking participants answered interview questions. Percentages are calculated by
dividing the number of participant responses falling within a category by the total number of codable
responses given.

31
Table 3 (Continued)
Question and percentage in response N of people w/ N of codable Kappa
category codable response responses

Medications that stop the disease from getting worse (11.1%)

Don’t know (33.3%)

Medications that increase the lifespan (11.1%)

14. How would your family care for a family 5 7 0.92
member with dementia?

Medications that slow down the damage (14.3%)

Keep at home with family until unmanageable, then move to rest home (14.3%)

Care for that person and keep them as comfortable as possible (42.9%)

Look amongst your siblings and try to figure out what’s going on (14.3%)

Convalescent home (14.3%)

15. Where would you seek help in caring for 5 12 0.67
someone with dementia?

Primary care doctor (8.3%)

Specialized physician (16.7%)

Other mental health professional other than psychiatrist (8.3%)

Convalescent home (8.3%)

Nursing facility (25%)

Family participates in care as long as possible (33.3%)

16. Is there anything you can do to make it 7 8 1.00
less likely that you or a family member
would develop dementia?

Eat the right foods (12.5%)

Emotional support from others (12.5%)
Note. Seven English-speaking participants answered interview questions. Percentages are calculated by
dividing the number of participant responses falling within a category by the total number of codable
responses given.

32
Table 3 (Continued)
Question and percentage in response N of people w/ N of codable Kappa
category codable response responses

No (25%)

Don’t know (25%)

If you see signs early on see a doctor/specialist and get treated (25%)

17. How do you think we can encourage 7 9 0.81
more people to participate in research
studies about dementia?

Teach the community about dementia (44.4%)

Advertise in community centers- nutritional centers, health centers, recreational centers,
church (22.2%)

Advertise in Spanish-speaking media-television and radio (33.3%)
Note. Seven English-speaking participants answered interview questions. Percentages are calculated by
dividing the number of participant responses falling within a category by the total number of codable
responses given.

Script 2 Focus Groups
Results from the 33 participants in the Spanish-speaking focus groups using
Script 2 can be found in Table 4. Cohen’s kappa ranged from 0.88 to 1.00, indicating
overall adequate agreement between raters. Participants labeled the person in the vignette
as having AD, getting older, losing their memories, or having dementia, with the majority
who responded suggesting the person was experiencing a mental disorder and most of the
remaining describing it as both a physical and mental disorder.
As participants provided a variety of names for what they believed was happening
to the person in the vignette, the term dementia is used in the description of the remaining
focus group questions and responses that follow. Note, however, that the entire script was
predicated on what they believed was happening to the relative.
33
Participants highlighted forgetting things, getting lost easily, asking for questions
to be repeated, and needing someone to take care of them (or lack of independence) as
behavioral markers of dementia. Some participants mentioned differences between AD
and dementia as being that persons with AD forget things more and that persons with
dementia behave more strangely, while some others stated they are the same. However,
none accurately mentioned that AD is one form or cause of dementia. The Spanish-
speaking sample were evenly split between those who estimated the prevalence of
dementia in older adults as 20% or higher and those participants who estimated it to be
less than 10%.
The most frequently stated cause of dementia was genetics, but they also
acknowledged ways of reducing the risk of dementia as doing more physical and mental
exercise, attaining a higher level of education, healthier diet, and staying positive by not
carrying a lot of stress and using various means of distraction.
Participants reported they would engage in help-seeking behaviors such as
seeking medical help for a diagnosis and investigating the problem in order to determine
the best treatment. Participants reported that other than bringing relief to the family
knowing their relative was receiving the best care possible, the benefits of a medical
diagnosis were guessed to be medications that may slow down the process or stop the
damage of dementia, relieve anxiety, or reduce risky or aggressive behaviors. Other
treatments included nutrition, vitamins, the help of God, and mental exercise for
cognitive enhancement. Participants also emphasized heavy family involvement in caring
34
for and supporting the person, doing things that the relative would enjoy such as making
them laugh, or letting them interact with a pet for affection.
Participants suggested educating the community about dementia and placing
advertisements in Spanish-speaking media (e.g., T.V. or radio), places of work or school,
and community centers (e.g., churches, libraries, senior services, stores, or health fairs) in
order to encourage more Latino community members to participate in research studies
about dementia.
Table 4: Spanish Focus Groups

Question and Percentage in Response N of people w/ N of codable Kappa
Category codable response responses

1.
¿Qué creen ustedes que le está ocurriendo 28 32 1.00
a ese familiar?
[What do you believe is happening to this relative?]

Se estan envejiciendo (18.8%)
[She is getting older]

Perdiendo sus memorias- se le olvida las cosas (9.4%)
[Losing her memories- She forgets things]

La enfermedad de Alzheimer (46.9%)
[Alzheimer’s disease]

No sé (3.1%)
[I do not know]

Algun enfermedad (12.5%)
[Some disease]

No esta viviendo en el presente (3.1%)
[She is not living in the present]

Esta preocupada (3.1%)
[She is preoccupied]

Trastorno psicomotor (3.1%)
[Psychomotor disorder]
Note. Thirty-three Spanish-speaking participants answered interview questions. Percentages are calculated
by dividing the number of participant responses falling within a category by the total number of codable
responses.
35
Table 4: (Continued)

Question and Percentage in Response N of people w/ N of codable Kappa
Category codable response responses

2. ¿Qué otras palabras han usado ustedes u 19 30 0.96
otras personas para referirse a lo que le
esta pasando a ese familiar?
[What other words have you or others used to refer to what you believe is happening to this relative?]

Se estan envejiciendo (13.3%);
[They are getting older]

Perdiendo sus memorias-se le olvida las cosas (36.7%)
[Losing their memories- they forget things]

La enfermedad de Alzheimer (20%)
[Alzheimer’s disease]

Demencia (20%)
[Dementia]

Depresion (6.7%)
[Depression]

Esta loco (3.3%)
[They are crazy]

3. ¿Está ese familiar experimentando un 14 14 0.96
trastorno físico, trastorno mental, la
combinación de un trastorno físico y
mental, u otro tipo de trastorno o ningun trastorno?
[Is this relative experiencing a physical disorder, mental disorder, combination of physical and mental
disorder, another type of disorder, or not a disorder?]

Trastorno mental (64.3%)
[Mental disorder]

Trastorno fisico y mental (28.6%)
[Mental disorder]

No sé (7.1%)
[I do not know]

4.
¿Cómo mas puede alguien como esta 24 41 0.88
persona actuar diferente a una persona que
no tiene este problema?
[How else might someone like this act differently from someone without this problem?]
Note. Thirty-three Spanish-speaking participants answered interview questions. Percentages are calculated
by dividing the number of participant responses falling within a category by the total number of codable
responses.
36
Table 4: (Continued)

Question and Percentage in Response N of people w/ N of codable Kappa
Category codable response responses

Se pierden muy facil (9.8%)
[They get lost easily]

Se distraen muy facil (2.4%)
[They get distracted easily]

Se olviden lo que van a decir o que van a ser en seguida (4.9%)
[They forget what they’re going to say or do next]

Se olviden de quienes son sus familiares y amistades (7.3%)
[They forget who their families or friends are]

Piden que se les repitan las preguntas (9.8%)
[They ask for questions to be repeated]

No sé (7.3%)
[I do not know]

Son incoherentes (4.9%)
[They are incoherent]

Nada le gusta y todo le molesta (4.9%)
[They don’t enjoy anything and everything bothers them]

Se tiemblen las manos y la cabeza (7.3%)
[Their hand and/or head trembles]

Estan en su proprio mundo (2.4%)
[They are in a world of their own]

No comprenden lo que alguien le dice (2.4%)
[They do not understand what people say to them]

Se le olvida las cosas (12.2%)
[They forget things]

Se confunden los nombres de las cosas (2.4%)
[They confuse the names of things]

Olvide que gente lo ha visitado (2.4%)
[They forget that people have visited them]
Note. Thirty-three Spanish-speaking participants answered interview questions. Percentages are calculated
by dividing the number of participant responses falling within a category by the total number of codable
responses.

37
Table 4: (Continued)

Question and Percentage in Response N of people w/ N of codable Kappa
Category codable response responses

No pueden coordinar nada (4.9%)
[They can not coordinate anything]

El rostro cambia (2.4%)
[The expression of their face changes]

No hay (2.4%)
[There is none]

Necesita alguien que los cuide (9.8%)
[They need someone to take care of them]

5.
¿Qué otras cosas puede hacer una persona 2 2 1.00
que los llevaría a pensar que sufre de este
problema?
[What other things would a person do that would make you think they have this problem?]

Se vuelven agresivos (100%)
[They become aggressive]

6. ¿Cuál es la diferencia entre la enfermedad 23 33 0.91
de Alzheimer y demencia?
[What are the differences between Alzheimer’s disease and dementia?]

Son las mismas (15.2%)
[They are the same]

No sé (3.0%)
[I do not know]

Demencia es locura (6.1%)
[Dementia is craziness]

En demencia, hacen cosas raras (9.1%)
[In dementia, they do strange things]

En Alzheimer’s se olvidan las cosas (21.2%)
[In Alzheimer’s, they forget things]

Demencia es algo voluntario y Alzheimer’s no es (3.0%)
[Dementia is somethings voluntary and Alzheimer’s is not]
Note. Thirty-three Spanish-speaking participants answered interview questions. Percentages are calculated
by dividing the number of participant responses falling within a category by the total number of codable
responses.

38
Table 4: (Continued)

Question and Percentage in Response N of people w/ N of codable Kappa
Category codable response responses

Son diferentes (6.1%)
[They are different]

Demencia es peor que Alzheimer (3.0%)
[Dementia is worse than Alzheimer’s]

Los con demencia necesita ayuda professional, pero los con Alzhiemer puedes cuidarlos como un bebe
dentro de la familia (3.0%)
[Those with dementia need professional help, but those with Alzheimer’s act like babies/children and
you can take care of them within the family]

La persona con Alzheimer se pierde muy facil (3.0%)
[The person with Alzheimer’s get lost easily]

Alguien con Alzheimer se tiemblen los manos (3.0%)
[The hands tremble of someone with Alzheimer’s]

La gente con demencia son mas agresivos (6.1%)
[The people with dementia are more aggressive]

La gente con demencia son desorientados (3.0%)
[The people with dementia are disoriented]

Como en esquizofrenia, los con demencia piensen que familiares le van hacer dano (3.0%)
[Like in schizophrenia, those with dementia think their family members will do them harm]

Alzheimer esta conectado al cuerpo (3.0%)
[Alzheimer’s is connected to the body]

Los con demencia saben coordinar (6.1%)
[Those with dementia know how to coordinate]

Los con demencia se pierden muy facil (3.0%)
[Those with dementia get lost easily]

7. ¿Cuál es el porcentaje de personas que 32 32 n/a
sufren de demencia?
[What percentage of people have dementia?]

≤ 10% (46.9%)

15% (6.3%)
Note. Thirty-three Spanish-speaking participants answered interview questions. Percentages are calculated
by dividing the number of participant responses falling within a category by the total number of codable
responses.

39
Table 4: (Continued)

Question and Percentage in Response N of people w/ N of codable Kappa
Category codable response responses

20% (12.5%)

30-35% (15.6%)

≥ 50% (18.8%)

8.
Si viviéramos bastantes años, ¿es qué 6 6 1.00
todos padeceríamos de demencia?
[If people were to live long enough, would everyone develop dementia?]

Si (16.7%)
[Yes]

No (83.3%)
[No]

9. ¿Qué causa la demencia? 23 58 0.94
[What causes dementia?]

Comiendo cosas equivocadas (10.3%)
[Eating the wrong things]

Llevar sin hacer suficiente ejercicio fisico (12.1%)
[Not doing enough physical exercise]

Llevar sin hacer ejercicio mental (10.3%)
[Not doing enough mental exercise]

Pasar demasiado tiempo solo (8.6%)
[Spending a lot of time alone]

Genes (20.7%)
[Genes]

Problemas de embarazo y alumbramiento (1.7%)
[Complications during pregnancy or birth delivery]

No sé (1.7%)
[I do not know]

Falta de vitamina (1.7%)
[Lack of vitamins]

Note. Thirty-three Spanish-speaking participants answered interview questions. Percentages are calculated
by dividing the number of participant responses falling within a category by the total number of codable
responses.
40
Table 4: (Continued)

Question and Percentage in Response N of people w/ N of codable Kappa
Category codable response responses

Locura (1.7%)
[Craziness]

Alguna tragedia (5.1%)
[Experiencing some tragedy]

Es psico-social (6.9%)
[It is psychosocial]

La gente que fuma y toma (8.6%)
[The people who drink or smoke]

Tomando medicinas equivocadas (1.7%)
[Taking the wrong medications]

La preocupacion con estres (3.5%)
[Preoccupation with stress]

Mala actitud (3.5%)
[Bad attitude]

La manera de cuidarse (1.7%)
[The way one takes care of oneself]

10. ¿Qué harían ustedes si un miembro de 31 47 0.99
su familia empezara a actuar asi?
[What would you do if one of your family members started to behave this way?]

Buscaria ayuda medica (44.7%)
[Seek medical help]

Buscaria ayuda de un professional de salud mental (4.3%)
[Seek from a help from a mental health professional]

Buscaria ayuda religiosa (2.1%)
[Seek religious help]

Investigaria el problema (14.9%)
[Investigate the problem]

Manejaria el problema con los familiares o amigos circanos (10.6%)
[Manage the problem within the family or close friends]

Note. Thirty-three Spanish-speaking participants answered interview questions. Percentages are calculated
by dividing the number of participant responses falling within a category by the total number of codable
responses.
41
Table 4: (Continued)

Question and Percentage in Response N of people w/ N of codable Kappa
Category codable response responses

Le haría hacer ejercicios (2.1%)
[Have them do exercises]

Hacer cosas que le gusta, e.g., hacerlo reír (8.5%)
[Do things that they enjoy, e.g., make them laugh]

No contradecirlos (4.3%)
[Do not contradict them]

Llevarlo a un evaluacion (6.4%)
[Take them for an evaluation]

Buscar un grupo de apoyo (2.1%)
[Seek a support group]

11. ¿Cuáles son los beneficios de que un 23 29 0.98
doctor determine si el miembro de
familia tiene demencia?
[What are the benefits of having a doctor determine whether a family member has dementia?]

Si no es demenica, puede ser algo reversible (6.9%)
[If it is not dementia, it might be something reversible]

Tal vez sepan como detener el proceso (13.8%)
[Maybe they know how to slow it down]

Identificando el problema, ayudaria a identificar el mejor tratamiento (37.9%)
[Identifying the problem, helps in identifying the best treatment]

Para ver si esta loco (3.5%)
[To see if they are crazy]

Para ver el nivel que esta la enfermedad (6.9%)
[To see at what stage the disease is]

Ayudar a la familia tranquilizar (10.3%)
[To help the family relax]

El medico puede darle medicinas (13.8%)
[The doctor can give them medicines]

Tomar mas informacion del doctor para ayudarles mas (3.5%)
[To get more information from the doctor to be able to help the patient more]
Note. Thirty-three Spanish-speaking participants answered interview questions. Percentages are calculated
by dividing the number of participant responses falling within a category by the total number of codable
responses.
42
Table 4: (Continued)

Question and Percentage in Response N of people w/ N of codable Kappa
Category codable response responses

Seria mandarlo a un lugar donde le enseñan como [compensar por sus perdidas] (3.5%)
[They can send them to a place where they teach them to (compensate for their losses)]

12. ¿Cuáles son los recursos disponibles 22 30 0.90
para ayudar a alguien con demencia?
[What ways are available to help someone with dementia?]

Medicinas que lo curan (3.3%)
[Medications that cure them]

Medicinas que ayudan a controlar a los comportamientos riesgosos o agresivos (6.7%)
[Medications that help control risky or aggressive behavior]

Medicinas que amenoran la progression del daño (3.3%)
[Medications that slow down the damage]

Therapia psicologico que ayuda controlar el compartimiento riesgoso o agresivo (3.3%)
[Psychotherapy that helps control risky or aggressive behavior]

Ejercicios mentales que ayuden a mejorar la memoria y el pensamiento (3.3%)
[Mental exercises that help improve memory and thinking]

Terapia psicologico que ayuda a lidiar con el diagnostico y/o la perdida del funcionamento (3.3%)
[Psychotherapy that helps them cope with the diagnosis and/or the loss of function]

No sé (6.7%)
[I do not know]

Tiempo para apoyar a la persona y cuidarlo (23.3%)
[Time to support the person and take care of them]

Si hay tratamiento (6.7%)
[There is treatment]

Tratamiento para calmar las ansiedades (6.7%)
[Treatment to relieve the anxiety]

Ayudarles estar independiente (3.3%)
[Help them to be independent]

Vitaminas (10%)
[Vitamins]

Note. Thirty-three Spanish-speaking participants answered interview questions. Percentages are calculated
by dividing the number of participant responses falling within a category by the total number of codable
responses.
43
Table 4: (Continued)

Question and Percentage in Response N of people w/ N of codable Kappa
Category codable response responses

Nutrición (13.3%)
[Nutrition]

Ejercicio físico (3.3%)
[Physical exercise]

Llevarles a un lugar donde lo cuidan todo el tiempo (3.3%)
[Take them to a place that will provide 24-hour care]

13. ¿Qué tratamientos existen para la 18 28 0.94
demencia?
[What treatments exist to deal with dementia?]

Medicinas que amenoran la progresión del daño (3.6%)
[Medications that slow down the damage]

Medicinas que ayudan a controlar a los comportamientos riesgosos, menos agresivos, o quitar ansiedad
(3.6%)
[Medications that help control risky or aggressive behavior or eliminates anxiety]

Medicinas que detienen la enfermedad y ayuda para que no empeore (7.1%)
[Medications that stop the disease from getting worse]

Terapia psicológica que ayuda controlar el compartimiento riesgoso o agresivo (3.6%)
[Psychotherapy that helps control risky or aggressive behavior]

Ejercicios mentales que ayuden a mejorar la memoria y el pensamiento (7.1%)
[Mental exercise that helps to improve memory or thinking]

No sé (3.6%)
[I do not know]

No hay (7.1%)
[There are none]

Tratamientos químicos, como la quimioterapia (3.6%)
[Chemical treatments, like chemotherapy]

Terapia con animales para cariño (10.7%)
[Pet therapy for affection]

Ejercicios y actividades fisico (3.6%)
[Physical exercises and activities]
Note. Thirty-three Spanish-speaking participants answered interview questions. Percentages are calculated
by dividing the number of participant responses falling within a category by the total number of codable
responses.
44
Table 4: (Continued)

Question and Percentage in Response N of people w/ N of codable Kappa
Category codable response responses

Vitaminas (3.6%)
[Vitamins]

Ir a la aroma terapia (3.6%)
[Aromatherapy]

Dios ayuda curar (10.7%)
[God helps cure]

Divertirse (10.7%)
[Enjoy oneself]

Nutrición (7.1%ó)
[Nutrition]

El ayudo de la familia (7.1%)
[The support of the family]

Medicina (3.6%)
[Medications]

14. ¿Cómo cuidarían sus familiares a un 2 2 1.00
miembro de familia con demencia?
[How would your family care for a family member with dementia?]

Reunir todos los miembros de su familia para cuidar a la persona (100%)
[Unite all of the family members to care for the person]

15. ¿A dónde acudirían ustedes para 2 2 1.00
conseguir ayuda y poder cuidar de una
persona con demencia?
[Where would you seek help in caring for someone with dementia?]

Su doctor personal (100%)
[Personal doctor]

16. ¿Hay algo que ustedes pudieran hacer 25 52 0.96
para que sea menos probable que ustedes
o un miembro de su familia padeciera de
demencia?
[Is there anything you can do to make it less likely that you or a family member would develop
dementia?]

Note. Thirty-three Spanish-speaking participants answered interview questions. Percentages are calculated
by dividing the number of participant responses falling within a category by the total number of codable
responses.
45
Table 4: (Continued)

Question and Percentage in Response N of people w/ N of codable Kappa
Category codable response responses

Comer las comidas saludables (23.1%)
[Eat the right foods]

Hacer mas ejercicio mental (15.4%)
[Do more mental exercise]

Hacer mas ejercicio físico (17.3%)
[Do more physical exercise]

Reducir la soledad (1.9%)
[Reduce your loneliness]

Buscar la razon porque vino esto (1.9%)
[Search for the reason why this came]

Informarse mas para ayudar-saber reconocer las sintomas (5.8%)
[Inform onself to help identify the symptoms]

No fumar (3.8%)
[Do not smoke]

Vitaminas (3.8%)
[Vitamins]

No tomar las drogas (1.9%)
[Do not drink alcohol]

La educacion (9.6%)
[Education]

Vivir en ciudades pequeñas y mas sanas (1.9%)
[Live in small cities that are healthier]

Ser positivo y no cargar mucho estrés (11.5%)
[Be positive and do not carry a lot of stress]

Dormir bien (1.9%)
[Sleep well]

17. ¿Cómo podemos lograr que más 26 39 0.97
personas participen en estudios de
investigación sobre la demencia?
[How do you think we can encourage more people to participate in research studies about dementia?]
Note. Thirty-three Spanish-speaking participants answered interview questions. Percentages are calculated
by dividing the number of participant responses falling within a category by the total number of codable
responses.
46
Table 4: (Continued)

Question and Percentage in Response N of people w/ N of codable Kappa
Category codable response responses

Educar la comunidad acerca de la demencia (30.8%)
[Education the community about dementia]

Anunciar el proyecto (17.9%)
[Advertise the project]

Anuncios por media en Espanol-radio o tele (12.8%)
[Advertisement in Spanish-speaking media- radio or T.V.]

Anuncios en lugares de trabajo o escuela (12.8%)
[Advertisement in places of work or school]

Anuncios en community centers- iglesias, biblioteca, servicios para personas mayores, tiendas o ferias
de salud (10.3%)
[Advertisement in community centers – churches, libraries, senior services, stores, or health fairs]

Hacer estudios y cuestionarios (5.1%)
[Do studies and questionnaires]

Traerlos hasta aca (2.6%)
[Bring them here (provide transportation to study location)]

Pedir a la comunidad que hablan directamente con vecinos y otro gente sobre el proyecto (7.7%)
[Ask community members to speak directly with neighbors and others about the project]

Note. Thirty-three Spanish-speaking participants answered interview questions. Percentages are calculated
by dividing the number of participant responses falling within a category by the total number of codable
responses.

Similarities and Differences Across Both Scripts
Both English- and Spanish-speaking participants reported idioms of dementia in
the Latino community to be AD, dementia, and loss of memories, though some Spanish-
speaking participants differentiated between AD and dementia in such a way that did not
appreciate that AD is one type or one cause of dementia. Some participants in the
Spanish-speaking sample labeled dementia as synonymous with getting older, and
English-speaking participants believed dementia was inevitable with advancing age. Both
47
samples agreed for the most part on the behavioral indicators of dementia including
getting lost easily, difficulty understanding speech, forgetting things, and a lack of
independence. English-speaking participants noted additional behavioral signs as
aggressive behaviors, acting as a different person from before, and difficulty in speech
production.
Participants in both samples overestimated the prevalence of dementia in older
adults, but it was mostly the Spanish-speaking sample that included participants that
underestimated its prevalence. While both samples implicated genetics as a cause of
dementia, it was mainly the Spanish-speaking sample that offered ways of preventing
dementia. Both English- and Spanish-speaking participants appeared open to seeking
medical help for a diagnosis if a relative were to display signs of dementia, describing it
to be the most reliable way to determine the best course of treatment. However,
participants in both samples seemed to lack knowledge of specific medical treatments,
appearing to guess that perhaps doctors might know of medications to slow down the
process of dementia. Spanish-speaking participants offered additional ways to treat
dementia including nutrition, vitamins, the help of God, and mental exercise.
Both samples heavily stressed the importance of having the family involved as
long as possible in caring for a relative with dementia by supporting the person, and
keeping them as happy and comfortable as can be. Spanish participants added that having
the ill relative play with a pet for would accomplish a similar objective. Finally, both
samples suggested educating the Latino community about dementia and advertising in
Spanish-speaking media and community centers as ways of encouraging more Latinos to
48
participate in research on dementia. Additional suggestions made by the Spanish
participants included advertising in places of work and school.
49
Chapter Four: Discussion
Latino Dementia Perceptions
The current study examined knowledge and perceptions of dementia among a
sample of 40 Latino community residents using a knowledge test and focus group
interview questions. The major theme found in both the knowledge test and focus group
data is that comprehensive education about dementia is surely needed by some Latino
community-dwelling adults. The current sample performed more poorly than the lowest
performing groups on the ADKS in the Carpenter et al. (2009) validation study. Very few
participants were able to specifically describe with confidence existing medical
treatments or the exact benefits of a medical evaluation for cognitive or behavioral
symptoms. As identified by participants themselves in answer to the question of how to
encourage more participation among Latino community members in future research on
dementia, the most common response was to explain what dementia is to the community.
The current findings suggest some Latinos may benefit from education on early dementia
signs, how and why dementia is diagnosed, its risk and protective factors, and what
current treatment and support are available for those with a diagnosis and their families.
This general conclusion supports previous research on the knowledge of AD and
cognitive health among Latinos (Ortiz & Fitten, 2000; Ayalon & Areán, 2004; Wilcox et
al., 2009; Gray et al., 2009; Gelman, 2009; Gelman, 2010;).
Findings from the current qualitative results of the entire sample support many of
the themes originally reported in past literature. Specifically, some Latinos did believe
dementia is a normal part of aging (Ortiz & Fitten, 2000; Gelman, 2009; Gray et al.,
50
2009). Generally, we found support for the prediction that very little knowledge exists of
the specific benefits of a medical evaluation of cognitive symptoms, though many
indicated they would seek medical help and would research the problem (Gelman, 2009;
Gelman, 2010; Ortiz & Fitten, 2000; Neary & Mahoney, 2005). Many acknowledged the
general value of having any problem diagnosed so that proper treatment can be selected,
yet stated they did not know what specific treatments are currently available beyond
psychotropic medications for controlling risky or aggressive behavior or relieving
anxiety. The qualitative results also supported the expectation that Latinos often report
genes as the cause of dementia, suggesting this theme found previously amid Latina
caregivers may exist across genders and across a broader segment of the Latino
population (Gray et al., 2009).
The beliefs that dementia is a normal part of aging, that it is caused by genetics,
and the lack of knowledge regarding specific medical benefits of early diagnosis may
each serve to delay help-seeking or engagement in behaviors that may reduce risk. As
emphasized in the 2010 Alzheimer’s facts and figures report published by the
Alzheimer’s Association (2010), though the greatest risk factor for dementia is advancing
age, dementia is not a normal part of aging. Participants also tended to overestimate the
prevalence of dementia in older adults. Believing dementia is to be expected with
advancing age may forestall the search for alternative reasons for presenting symptoms.
Similarly, as noted in the recent National Institutes of Health (NIH) consensus statement
on preventing Alzheimer’s disease and cognitive decline (USDHHS, 2010), though
genetic factors have strong evidence for their association with Alzheimer’s disease, only
51
a small proportion of AD cases are known to be explained by genetic variance alone.
Furthermore, certain types of dementia, such as vascular dementia, may be more
preventable than AD. A belief among some Latinos that nothing can be done to reduce
the risk of dementia may preclude engaging in ways that may reduce its risk. Lastly,
despite being open to formal medical help, not knowing what specific medical specialists
to seek a diagnosis from or knowing what are the specific benefits of medical diagnosis
may make it harder or less likely for Latinos to receive timely proper care.
Interestingly, few people endorsed dementia as a sign of craziness, or that
craziness might lead to dementia, far less than would be expected from past literature that
found Latino cultures view older adults with dementia symptoms as having “lost their
minds” or “gone crazy” (Henderson & Gutierrez-Mayka, 1992). Instead, Latino
participants often used terms such as loss of memories, AD, and dementia to refer to
dementia. Other unexpected findings across the sample include general agreement that
the main behavioral signs of dementia include getting lost, forgetting things, difficulty
understanding speech, and a lack of independence. Each of these are considered to be
symptoms of a moderately advanced dementia (Alzheimer’s Association, 2010), and the
association of a lack of independence with not aging well has been documented in a
previous study of Latino older adults (Sharkey, Sharf, & John, 2009). Frequently missed
items on the ADKS also included over-stating dependency as a core feature of AD,
adding further support to the conclusion that our sample knew less regarding the earliest
stages of dementia. We also found a heavy emphasis placed on the family being involved
52
in care for as long as possible, replicating the results of previous qualitative work (Neary
& Mahoney, 2005).
Risk Indicators of Low Dementia Literacy
As noted by Sharkey, Sharf, and John (2009), the population of Latinos in the
U.S. represent a heterogeneous collection of subgroups with likely variable knowledge
and perceptions that necessitate understanding contextual factors. The current study
aimed to identify certain subgroups of Latinos who may be in most need of information
regarding dementia. As hypothesized, we found that those with more years of education
had greater general AD knowledge, supporting previous findings on the importance of
education to health literacy (Smith et al., 2009) and AD literacy in particular (Ayalon &
Areán, 2004; Gray et al., 2009). Another interesting note is that education did not
correlate with income, suggesting education may not be a marker of SES; however, this
finding should be considered tentative given the low response rate to the question
regarding income.
In contrast, we did not find support for the hypothesis that greater experience with
AD would be associated with greater general AD knowledge. This might have been due
to the way experience with AD was calculated by combining multiple experience items.
Because a participant may receive more points for item 24, which asks how many
persons in the participant’s family have had AD, this item was weighted quite differently
than the others. Also, the experience with AD scale achieved only a marginal level of
internal consistency within the current sample, indicating these items as a whole may not
be measuring a single unidimensional latent construct.
53
As a comparison, Carpenter et al. (2009) evaluated ADKS scores by experience
with AD separately for each experience item. Replicating this analysis design, we still did
not find support for a relation between experience with AD and general AD knowledge.
Importantly, failure to find such a relationship might be accounted for by the relatively
restricted range of experience with AD among the current sample. While the total range
of scores possible on the combined experience with AD scale ranges from 0-27 points,
the current sample’s range of scores was 0-9 with an average of 3.38, suggesting any
direct comparison with the findings of Carpenter et al. (2009) should be interpreted with
caution. We also did not find a significant correlation between self-rated confidence and
AD knowledge as Carpenter et al. (2009) found in their study sample. This may suggest
that the current sample of Latinos were more likely to over- or under-estimate the
accuracy of their knowledge regarding AD.
Although no a priori predictions regarding differences in knowledge and
perceptions between Latinos participating in English and Spanish were made, we
explored such differences as a further means of identifying potential risk indicators of
low dementia literacy. Participants completing the ADKS in English answered more
items correctly than the participants answering in Spanish. We also noted Latinos
participating in English had higher mean years of education, and had lived more years in
the U.S. These findings must be considered preliminary given the small ratio of English-
speaking to Spanish-speaking participants, but they suggest preferred language, more
years of education, and years lived in the U.S. may be distal markers of acculturation that
54
influence health knowledge. Future work may wish to more directly examine the relation
of acculturation status to dementia literacy.
There were also interesting differences between Latinos participating in English
and those participating in Spanish in terms of their responses in the focus group
interviews, though a critical caveat is that only the Spanish-speaking participants were
responding according to their attributions of the character in the vignette. The current
results supported the prediction that Latinos would more often mention as means of
reducing dementia risk being socially involved and having a positive outlook or using
various means of distraction to avoid negative thoughts, but mostly only among the
Spanish-speaking participants. Whatever differences exist between the English- and
Spanish-speaking participants may be important qualifiers of previous findings on
reported means of risk reduction of cognitive decline among Latino older adults (Laditka,
2009; Sharkey, Sharf, & John, 2009).
The qualitative results provided only partial support for the prediction that
physical activity or diet would be less often mentioned among Latinos. Only a few
English-speaking participants mentioned diet as a means of reducing risk of dementia,
while in contrast to the findings of Wilcox et al. (2009) many Spanish-speaking
participants reported increased physical activity and better nutrition/diet as means of
reducing dementia risk. Two possible sources of this discrepancy are that the participants
in the Wilcox et al. (2009) study were only Latino older adults with the ability to speak
English, and their participants were responding to questions regarding brain health, not
dementia.
55
The NIH consensus statement argues that strong conclusions cannot yet be drawn
about the use of dietary supplements to prevent AD, but that upcoming studies on
physical activity and cognitive engagement may offer clues to the prevention or delay of
AD (USDHHS, 2010), though in this report they were not addressing dementia more
generally. In terms of the accuracy of Latinos’ beliefs in means of reducing risk of
dementia, Spanish-speaking participants overestimated the effectiveness of strategies for
preventing AD and dementia. This adds partial support to the conclusions reached by
Gray et al. (2009) that Hispanic/Latinas may inaccurately believe AD is currently
preventable while simultaneously believing genetics are one of its causes. This might also
suggest that Spanish-speaking Latinos may attribute the cause of AD to both genetic and
environmental influences. Finally, English-speaking Latinos may seem to be more
accurate regarding the current science on risk factors of AD on the basis of the focus
group data. Importantly, however, on the ADKS, the total sample as a whole
underestimated the importance of vascular risk factors of AD such as high cholesterol
and high blood pressure, suggesting both English- and Spanish-speaking
participants could profit from knowledge on risk factors of AD and dementia.
Limitations
The current findings should be considered in light of a few important limitations.
First, the Cronbach’s α for the ADKS among the respondents who completed the test in
Spanish was quite low (α = 0.28). This could reflect concerns with translation of the
material, since the coefficient α for the total sample including those who answered in
English was nearer the standardization sample of 0.43-0.77 (Carpenter et al., 2009).
56
Indeed, participants completing the ADKS in English answered more items correctly than
the participants answering in Spanish. It is difficult to draw conclusions, however, since
there were only 7 participants who completed the study in English, and as suggested
above, other important differences between the groups included years of education and
years residing in the U.S.
In addition, deletion of no single item would appear to improve the overall
internal consistency of the ADKS in the overall sample, as observed from the item
characteristics in Table 2. Furthermore, the 5 items answered most incorrectly were items
2, 6, 16, 18, 26. Comparing the hardest items among the current sample with the
published item difficulty indices in the standardization sample (Carpenter et al., 2009), it
can be seen that Latinos’ hardest items were also the most difficult items among the
standardization sample. Nonetheless, the current version of the ADKS must undergo
further psychometric analyses before it can be recommended as a general AD knowledge
test among Spanish-speakers.
The need to keep the focus group data anonymous precluded comparisons
between the English- and Spanish-speaking groups in terms of their interview responses
as a factor of other background variables (e.g., acculturation). Also, due to the differences
in the scripts used to elicit focus group and interview responses between the English- and
Spanish-speaking participants, interpretation of direct comparisons of emerged themes
between these groups must be considered preliminary. Compounding this problem is the
unequal number of participants between both groups. Future research might attempt to
57
replicate these findings in a larger and more balanced sample, as well as examine the
nature of such differences in terms of their relation to contextual variables.
The current study used purposive snowball sampling to recruit a convenience
sample of adult Latinos from Los Angeles County whose results may not generalize to
the general population of adult Los Angeles Latino community residents. For this reason,
the mere absence or low endorsement of a particular response among participants does
not prove that a given response is uncommon among adult Latinos more generally. Group
dynamics or other factors may have focused discussions on other responses, perhaps
lending noise to discrepancies between the English and Spanish participants.
Summary and Implications

Few studies have been undertaken to ascertain the knowledge and perceptions of
dementia among Latinos, as opposed to AD or cognitive health. The current study further
extended the literature on dementia literacy among Latinos by exploring knowledge and
perceptions among community laypersons of various ages, as only five participants
reported ever being the main family caregiver for someone with AD or a related disorder
and 85% reported being younger than age 65. In comparison, the vast majority of studies
have looked primarily at Latino caregivers of persons with AD or Latino older adults.
Identified caregivers of AD may already have received education from participating in
their care recipient’s treatment, an important distinction for informing public health
education campaigns that wish to educate community members before early signs of
dementia appear. Therefore, our sample may represent Latino community members who
58
might play a crucial role in the future detection of a family member’s cognitive
symptoms or in their family member’s care.
There was a high degree of agreement between raters in the coding of the English-
speaking and Spanish-speaking focus groups. The current findings also provided some
support for most of our hypotheses and predictions. It is clear that some Latinos could
profit from comprehensive information regarding AD and dementia in general.
Specifically, the content of the messages should center on the fact that dementia should
not be expected as a normal part of aging, the specific benefits of medical diagnosis
including available treatments, the state-of-the-science regarding risk and protective
factors of dementia, and early signs of dementia. Embedded in the context of the
messages should be terms used to describe dementia by Latinos such as loss of memories,
as well as being sensitive to and connecting with values on families remaining
participants in care. Results suggest Latinos would be receptive to learning about medical
benefits of diagnosis, as many indicated seeking a medical diagnosis was the most
reliable way to determine the appropriate treatment, and most suggested teaching Latinos
about dementia would improve participation in research studies.
Perhaps the second largest theme of the current study is that the community of
adult Latinos are also quite variable in terms of their knowledge and perceptions of AD
and dementia. As can be clearly seen in Tables 3 and 4, numerous responses were elicited
that were endorsed by relatively few participants. This may point to the variety of
perceptions about dementia and ways of describing such perceptions that exist within the
larger Latino community. Attempts were made to highlight important risk indicators of
59
low dementia literacy, such as years of education and language preference for the test and
focus group interview. Such indicators may alternatively be conceptualized as distal
markers of acculturation. The current results support the conclusions of Sharky, Sharf,
and John (2009) that Latinos comprise a highly heterogeneous population in terms of
their cognitive health literacy. Attempts to address dementia literacy among persons
identifying as Latino would benefit from acknowledging this variance, perhaps by
focusing messages on the subpopulations of greatest need within the Latino community.
Replication of the current findings may help guide the development of future health
communication tools.
60
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65
Appendix A: Alzheimer’s Disease Knowledge Scale and
Demographics Questionnaire: English Version

Knowledge About Alzheimer’s Disease
________________________________________________________________

Thank you for helping us with this project. Your answers are important, and we
appreciate your help.

Below are some statements about Alzheimer’s disease. Please read each
statement carefully and circle whether you think the statement is True or False. If
you aren’t sure of the right answer, make your best guess. It’s important to circle
an answer for every statement, even if you’re not completely sure of the answer.

True False 1. People with Alzheimer’s disease are particularly prone to
depression.

True False 2. It has been scientifically proven that mental exercise can
prevent a person from getting Alzheimer’s disease.

True False 3. After symptoms of Alzheimer’s disease appear, the
average life expectancy is 6 to 12 years.

True False 4. When a person with Alzheimer’s disease becomes
agitated, a medical examination might reveal other health
problems that caused the agitation.

True False 5. People with Alzheimer’s disease do best with simple
instructions giving one step at a time.

True False 6. When people with Alzheimer’s disease begin to have
difficulty taking care of themselves, caregivers should
take over right away.

True False 7. If a person with Alzheimer’s disease becomes alert and
agitated at night, a good strategy is to try to make sure
that the person gets plenty of physical activity during the
day.

True False 8. In rare cases, people have recovered from Alzheimer’s
disease.

True False 9. People whose Alzheimer’s disease is not yet severe can
benefit from psychotherapy for depression and anxiety.
66

True False 10. If trouble with memory and confused thinking appears
suddenly, it is likely due to Alzheimer’s disease.

True False 11. Most people with Alzheimer’s disease live in nursing
homes.

True False 12. Poor nutrition can make the symptoms of Alzheimer’s
disease worse.

True False 13. People in their 30s can have Alzheimer’s disease.

True False 14. A person with Alzheimer’s disease becomes increasingly
likely to fall down as the disease gets worse.

True False 15. When people with Alzheimer’s disease repeat the same
question or story several times, it is helpful to remind
them that they are repeating themselves.

True False 16. Once people have Alzheimer’s disease, they are no
longer capable of making informed decisions about their
own care.

True False 17. Eventually, a person with Alzheimer’s disease will need
24-hour supervision.

True False 18. Having high cholesterol may increase a person’s risk of
developing Alzheimer’s disease.

True False 19. Tremor or shaking of the hands or arms is a common
symptom in people with Alzheimer’s disease.

True False 20. Symptoms of severe depression can be mistaken for
symptoms of Alzheimer’s disease.

True False 21. Alzheimer’s disease is one type of dementia.

True False 22. Trouble handling money or paying bills is a common early
symptom of Alzheimer’s disease.

True False 23. One symptom that can occur with Alzheimer’s disease is
believing that other people are stealing one’s things.

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True False 24. When a person has Alzheimer’s disease, using reminder
notes is a crutch that can contribute to decline.

True False 25. Prescription drugs that prevent Alzheimer’s disease are
available.

True False 26. Having high blood pressure may increase a person’s risk
of developing Alzheimer’s disease.

True False 27. Genes can only partially account for the development of
Alzheimer’s disease.

True False 28. It is safe for people with Alzheimer’s disease to drive, as
long as they have a companion in the car at all times.

True False 29. Alzheimer’s disease cannot be cured.

True False 30. Most people with Alzheimer’s disease remember recent
events better than things that happened in the past.

Circle any number between 1 and 10 to indicate how much knowledge you think
you have about Alzheimer’s disease and related disorders.

1 2 3 4 5 6 7 8 9 10

I know nothing I have some I am very
at all knowledge knowledgeable

Next are some questions about your background.

1. Are you…. female male

2. How old are you? _______

3. What was the highest grade in school or college that you completed?_______

4. What type of work have you done for most of your life?

________________________________________________________________

5. What is your total yearly household income? ______________________

6. How many persons live in your household? ________________________

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7. What country were you born in? _________________________

8. If you were born outside the U.S., how old were you when you moved to the
U.S.? _______________

9. How long have you lived in the U.S.?________________________________

10. What, if any, religious organizations are you affiliated with?

________________________________________

For items 11-22, please read each item and rate it using the following scale:

1--------------------2-------------------3------------------4
Very poorly Not well Well Very Well

11. How well do you speak English? ___________

12. How well do you read in English? ___________

13. How well do you understand television programs in English? ___________

14. How well do you understand radio programs in English? _____________

15. How well do you write in English? _____________

16. How well do you understand music in English? ____________

17. How well do you speak Spanish? ___________

18. How well do you read in Spanish? ___________

19. How well do you understand television programs in Spanish? ___________

20. How well do you understand radio programs in Spanish? _____________

21. How well do you write in Spanish? _____________

22. How well do you understand music in Spanish? _____________

Finally are some questions about your experience with Alzheimer’s disease and
related disorders that also cause problems with memory and thinking.
69

23. Have you heard of Alzheimer’s disease?
Yes No

24. If any of the following people in your family had Alzheimer’s disease or a
related disorder, place a check next to their name. (check all that apply)
Mother Grandparents
Father Aunts or Uncles
Husband/wife Cousins
Brothers or sisters Other (please list):

25. Are you currently the main family caregiver for someone with Alzheimer’s
disease or a related disorder?
Yes No

26. Have you ever been the main family caregiver for someone with Alzheimer’s
disease or a related disorder?
Yes No

27. Have you ever attended an Alzheimer’s disease or related disorder support
group?
Yes No

28. Have you ever attended a class or educational program about Alzheimer’s
disease or a related disorder?
Yes No

29. Does your paid job involve working with people who have Alzheimer’s
disease or a related disorder?
Yes No

30. Do you volunteer with people who have Alzheimer’s disease or a related
disorder?
Yes No

31. From which of the following places have you obtained information about
Alzheimer’s disease and related disorders? (check all that apply)
family
friends and acquaintances
physicians or other health care professionals
Alzheimer’s Association
television or radio
books, newspapers, or magazines
religious leaders

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MEDLINE, PubMed, or similar professional databases
other Internet or World Wide Web sites
academic journals
research conferences
other sources (please list):
________________________________________

71
Appendix B: Alzheimer’s Disease Knowledge Scale and
Demographics Questionnaire: Spanish Version

Conocimientos Acerca de la Enfermedad de Alzheimer

Gracias por ayudarnos con este proyecto. Sus respuestas son importantes, y
agradecemos su ayuda.

A continuación aparecen unas declaraciones acerca de la enfermedad de
Alzheimer. Favor de leer cada declaración con cuidado y poner un círculo a la
palabra, Verdad/Falso, que mejor exprese su sentir. Si no está seguro de la
respuesta correcta, escoja la que mejor le parezca. Es importante que escoja
una respuesta para cada pregunta, poniéndole un círculo, aunque no esté
completamente seguro si está bien o no.

Verdad Falso 1. Los que padecen de la enfermedad de Alzheimer son
propensos en particular a sufrir de depresión.

Verdad Falso 2. Se ha probado científicamente que el ejercicio mental puede
evitar el desarrollo de la enfermedad de Alzheimer.

Verdad Falso 3. Después que aparecen los síntomas de la enfermedad de
Alzheimer, el pro medio de vida es de 6 a 12 años.

Verdad Falso 4. Cuando alguien con la enfermedad de Alzheimer se pone
inquieto, es posible que un examen médico revele otros
problemas de salud que causen la agitación.

Verdad Falso 5. Las personas con la enfermedad de Alzheimer se
desenvuelven mejor con instrucciones sencillas que se den
paso a paso.

Verdad Falso 6. Cuando alguien con la enfermedad de Alzheimer empieza a
tener dificultad cuidando de sí mismo, el que se encarga de
él debe asumir la responsabilidad de su cuido
inmediatamente.

Verdad Falso 7. Si un individuo con la enfermedad de Alzheimer se despierta
y se pone inquieto de noche, una buena estrategia es
asegurar que la persona participe en bastante actividad
física durante el día.

72
Verdad Falso 8. En casos raros, hay quienes se han recuperado de la
enfermedad de Alzheimer.

Verdad Falso 9. Las personas para quienes la enfermedad de Alzheimer no
esté muy avanzada pueden sacar provecho de la
psicoterapia para la depresión y la ansiedad.

Verdad Falso 10. Si problemas de memoria y de pensamiento confuso
aparecen de repente, es probable que se deba a la
enfermedad de Alzheimer.

Verdad Falso 11. La mayor parte de las personas que sufren de la
enfermedad de Alzheimer vive en asilos de ancianos.

Verdad Falso 12. La mala nutrición puede empeorar los síntomas de la
enfermedad de Alzheimer.

Verdad Falso 13. Una persona que tenga treinta y tantos años puede sufrir de
la enfermedad de Alzheimer.

Verdad Falso 14. Una persona con la enfermedad de Alzheimer tiene más
tendencia a a caerse a medida que vaya empeorando la
enfermedad.

Verdad Falso 15. Cuando una persona con la enfermedad de Alzheimer repita
la misma pregunta o el mismo cuento varias veces, es útil
recordarle que se está repitiendo.

Verdad Falso 16. Una vez que se padece de la enfermedad de Alzheimer, la
persona ya no es capaz de hacer decisiones bien
fundamentadas acerca de su propio cuido.

Verdad Falso 17. Eventualmente, una persona con la enfermedad de
Alzheimer va a necesitar supervisión las 24 horas al día.

Verdad Falso 18. El tener el colesterol alto puede aumentar el riesgo para el
desarrollo de la enfermedad de Alzheimer.

Verdad Falso 19. El temblor de manos o brazos es un síntoma común en
personas que sufren de la enfermedad de Alzheimer.

Verdad Falso 20. Los síntomas de una depresión severa pueden confundirse
con los síntomas de la enfermedad de Alzheimer.

73
Verdad Falso 21. La enfermedad de Alzheimer es un tipo de demencia.

Verdad Falso 22. Dificultad al manejar el dinero o pagar cuentas es un
síntoma inicial común de la enfermedad de Alzheimer.

Verdad Falso 23. Un síntoma que puede ocurrir con la enfermedad de
Alzheimer es el creer que los demás se roban nuestras
pertenencias.

Verdad Falso 24. Cuando una persona sufre de la enfermedad de Alzheimer,
el usar notas recordatorias como un apoyo puede contribuir
a su decaemiento.

Verdad Falso 25. Existen medicinas por receta que previenen la enfermedad
de Alzheimer.

Verdad Falso 26. Es posible que el padecer de alta presión aumente la
probabilidad de que uno sufra de la enfermedad de
Alzheimer.

Verdad Falso 27. Los genes son sólo parcialmente responsables por el
desarrollo de la enfermedad de Alzheimer.

Verdad Falso 28. No es peligroso conducir si se sufre de la enfermedad de
Alzheimer con tal que la persona lleve un acompañante en
el carro a toda hora.

Verdad Falso 29. La enfermedad de Alzheimer no tiene cura.

Verdad Falso 30. La mayoría de las personas con la enfermedad de
Alzheimer recuerda acontecimientos recientes mejor que lo
que pasó años atrás.

Póngale un círculo a cualquier número entre 1 y 10 para indicar lo que usted
cree que sabe acerca de la enfermedad de Alzheimer y trastornos relacionados.

1 2 3 4 5 6 7 8 9 10

No sé nada Sé algo Sé mucho

A continuación aparecen unas preguntas acerca de sus antecedentes.

1. ¿Es usted.... mujer hombre

74

2. ¿Qué edad tiene? _____________

3. ¿Cuál fue el grado más alto que terminó en la escuela o en la
universidad?__________

4. ¿Qué clase de trabajo ha desempeñado usted durante la mayor parte de su
vida?

5. ¿Cuál es el ingreso total de su hogar anualmente?

6. ¿Cuántas personas viven en su hogar?

7. ¿En qué país nació usted?________________________________________

8. Si nació fuera de EEUU, ¿qué edad tenía cuando se mudó a
EEUU?_______________

9. ¿Cuánto tiempo hace que vive en EEUU?____________________________

10. ¿Con qué organización religiosa se identifica usted, si es que se identifica
con alguna?
________________________________________________________________

Para las preguntas 11-22, por favor, lea cada pregunta y déle un puntuaje
utilizando la siguiente escala:

1--------------------2-------------------3------------------4
Muy Mál Mál Bien Muy Bien

11. ¿Qué tan bien habla Inglés?____________

12. ¿Qué tan bien lee en Inglés? ___________

13. ¿Qué tan bien entiende los programas de televisión en Inglés? __________

14. ¿Qué tan bien entiende los programas de radio en Inglés? _____________

15. ¿Qué tan bien escribe en Inglés? _____________

16. ¿Qué tan bien entiende la música en Inglés? ____________

17. ¿Qué tan bien habla español? ___________

75
18. ¿Qué tan bien lee en español? ___________

19. ¿Qué tan bien entiende los programas de televisión en español? ________

20. ¿Qué tan bien entiende los programas de radio en español? ____________

21. ¿Qué tan bien escribe en español? _____________

22. ¿Qué tan bien entiende la música en español? _______________

Finalmente, a continuación aparecen preguntas acerca de su experiencia con la
enfermedad de Alzheimer y trastornos relacionados que causan problemas con
la memoria y el pensamiento.

23. ¿Ha oído hablar de la enfermedad de Alzheimer?
Sí No

24. Si alguna de las siguientes personas de su familia ha padecido de la
enfermedad de Alzheimer o de un trastorno relacionado, marque la casilla
apropiada. (marque todo lo que se aplique)

Madre Abuelos
Padre Tíos
Marido/esposa Primos
Hermanos Otro
(especifique):___________________________

25. ¿Actualmente es usted el cuidador principal en la familia de alguien que
sufre de la enfermedad de Alzheimer o de un trastorno relacionado?
Sí No

26. ¿Alguna vez ha sido usted el cuidador principal de alguien con la
enfermedad de Alzheimer o un trastorno relacionado?
Sí No

27. ¿Ha asistido usted alguna vez a un grupo de apoyo de la enfermedad de
Alzheimer o trastornos relacionados?
Sí No

28. ¿Alguna vez ha asistido usted a una clase o programa educativo sobre la
enfermedad de Alzheimer o trastornos relacionados?
Sí No

29. En el trabajo renumerado suyo, ¿se encarga de personas con la enfermedad

76
de Alzheimer o trastornos relacionados?
Sí No

30. ¿Sirve usted de voluntario para atender a personas que sufren de la
enfermedad de Alzheimer o trastornos relacionados?
Sí No

31. ¿De cuál de las siguientes fuentes ha obtenido usted información sobre la
enfermedad de Alzheimer o trastornos relacionados?

familia
amigos y amistades
médicos u otros profesionales de la medicina
La Asociación Alzheimer
televisión o radio
libros, periódicos, o revistas
líderes religiosos
MEDLINE, PubMed, o bases de datos profesionales similares
otros Sitios del Internet o del Web Mundial
revistas acádemicas
conferencias de investigaciones
otras fuentes
(especifique):____________________________________________

77
Appendix C: Focus Group Script 1

Welcome everyone, and thank you for taking the time to help us with this project. My name is Carlos
Rodriguez, and I’m a doctoral student in the Psychology department at USC.

We’ll start today by first passing out a questionnaire, and when everyone is finished completing it, we will
begin with the focus group. All of your answers, both in the questionnaire and what you say in the group
today will not be shared with anyone outside of the research team. Please do not put your name on the
questionnaire. Any questions? OK, let’s get started. I will pass around the questionnaire and some pencils.
Read the instructions and begin answering the questions. Raise your hand if you have a question. When you
are done, come up and insert your completed questionnaire into the opening of this box.

[Hand out Alzheimer’s Disease Knowledge Scale short form with demographics.]

Great! Now that we’re all done, we may begin with the focus group.

Remember, nothing you say here today will be traced back to you. In order to ensure this, please keep from
identifying any individuals using first and last names. Also, when you have something to say, I’d like to ask
that you please show respect for everyone here by waiting until the person talking is done before you begin
to speak. This way, we have a chance to hear everyone’s point of view. I’ll ask one question at a time, and
once everyone in the group has had a chance to answer, we can move on to the next question. There are 9
questions in total, and so that we don’t keep anyone here longer than planned, I might interrupt you to
move on to the next question.

[Begin audio recording.]

1. Many of you have heard of Alzheimer’s disease and other memory or thinking disorders before. What
other words have you or others used to refer to such problems?

You’ve given me a lot of different terms to use to refer to these problems, such as [use their examples]. A
lot of people who do this kind of work prefer to use the term dementia. To make this easy for me, in the
following questions I’m going to use the term dementia to refer to what you’ve called [use participants’
words]. So when I say dementia I mean Alzheimer’s disease and other things that cause dementia.

Now, some of you have a family member with dementia. So, when it’s relevant to the question, please feel
free to share some of your experiences in trying to figure out what was wrong and how you got help.

2. How would someone with dementia act differently from someone without this problem?
a. What things would a person do that would make you think they have dementia?
b. How is this different from changes in memory or thinking that you believe are normal or to
be expected as a person grows older?

3. What percentage of people have dementia?
a. If people were to live long enough, would everyone develop dementia?

4. What causes dementia?
a. Why do some people have dementia and others don’t?

5. What would you do if one of your family members started to [use participants’ examples of dementia
behaviors]?
a. Where would you turn for help first if you thought a family member might have dementia?

78
6. No one mentioned taking your family member to a doctor.
a. What are the benefits of having a doctor determine whether a family member has
dementia?

7. What ways are available to help someone with dementia?
a. What treatments exist to deal with dementia?
b. How would your family care for a family member with dementia?
c. Where would you seek help in caring for someone with dementia?

8. Is there anything you can do to make it less likely that you or a family member would develop
dementia?
a. What kinds of things could you do?

9. In order to learn more about the causes of dementia, ways to treat it and maybe eventually cure dementia,
and how to prevent dementia, we need to do research. How do you think we can encourage more people
to participate in research studies about dementia?

[End audio recording.]

Thank you all very much for helping us with this project.

[Pass out gift cards.]

If you have any questions regarding memory problems and dementia, we can answer some of those now.
Otherwise, feel free to leave us your name and phone number, and we can contact you with further
information about dementia, the results of this study, or participation in current or future research. Your
name and contact information will not be connected to any of your responses on the questionnaire or focus
group.

[Collect name and phone number of those interested in receiving further information.]

79
Appendix D: Focus Group Script 2 (English Version)

Welcome everyone, and thank you for taking the time to help us with this project. My name is Carlos
Rodriguez, and I’m a doctoral student in the Psychology department at USC.

We’ll start today by first passing out a questionnaire, and when everyone is finished completing it, we will
begin with the focus group. All of your answers, both in the questionnaire and what you say in the group
today will not be shared with anyone outside of the research team. Please do not put your name on the
questionnaire. Any questions? OK, let’s get started. I will pass around the questionnaire and some pencils.
Read the instructions and begin answering the questions. Raise your hand if you have a question. When you
are done, come up and insert your completed questionnaire into the opening of this box.

[Hand out Alzheimer’s Disease Knowledge Scale short form with demographics.]

Great! Now that we’re all done, we may begin with the focus group.

Remember, nothing you say here today will be traced back to you. In order to ensure this, please keep from
identifying any individuals using first and last names. Also, when you have something to say, I’d like to ask
that you please show respect for everyone here by waiting until the person talking is done before you begin
to speak. This way, we have a chance to hear everyone’s point of view. I’ll ask one question at a time, and
once everyone in the group has had a chance to answer, we can move on to the next question. There are 9
questions in total, and so that we don’t keep anyone here longer than planned, I might interrupt you to
move on to the next question.

[Begin audio recording.]

1. Imagine an older adult relative close to you is 75 years old and lives in the U.S. Recently she has begun
to be forgetful. She confuses peoples’ names, even those she knows well. She often seems not to be able
to remember things from one moment to the next. One example was when she went to the market to buy
food and came back with nothing, having forgotten what she went out for. She repeats herself in
conversation, and always seems to talk about the past. Your family first noticed the problem 1 year ago.
Since then it has been getting steadily worse. What do you believe is happening to this relative? What
other words have you or others used to refer to what you believe is happening to this relative? Is this
relative experiencing a physical disorder, mental disorder, combination of physical and mental disorder,
another type of disorder, or not a disorder?

Now, some of you may have had a family member like this. So, when it’s relevant to the question, please
feel free to share some of your experiences in trying to figure out what was wrong and how you got help.

2. How else might someone like this act differently from someone without this problem?
a. What other things would a person do that would make you think they have this problem?
b. How is this different from changes in memory or thinking that you believe are normal or to
be expected as a person grows older?

3. What are the differences between Alzheimer’s disease and dementia (or use their words)?

4. What percentage of people have dementia (or use their words)?
a. If people were to live long enough, would everyone develop dementia (or use their words)?

5. What causes dementia (or use their words)?
a. Why do some people have dementia (or use their words) and others don’t?

80
6. What would you do if one of your family members started to [use participants’ examples of dementia
behaviors]?
a. Where would you turn for help first if you thought a family member might have dementia (use their
words)?

7. No one mentioned taking your family member to a doctor.
a. What are the benefits of having a doctor determine whether a family member has
dementia (or use their words)?

8. What ways are available to help someone with dementia (or use their words)?
a. What treatments exist to deal with dementia (or use their words)?
b. How would your family care for a family member with dementia (or use their words)?
c. Where would you seek help in caring for someone with dementia (or use their words)?

9. Is there anything you can do to make it less likely that you or a family member would develop
dementia (or use their words)?
a. What kinds of things could you do?

10. In order to learn more about the causes of dementia (or use their words), ways to treat it and maybe
eventually cure dementia (or use their words), and how to prevent dementia (or use their words), we
need to do research. How do you think we can encourage more people to participate in research studies
about dementia (or use their words)?

[End audio recording.]

Thank you all very much for helping us with this project.

[Pass out gift cards.]

If you have any questions regarding memory problems and dementia (or use their words), we can answer
some of those now. Otherwise, feel free to leave us your name and phone number, and we can contact you
with further information about dementia (or use their words), the results of this study, or participation in
current or future research. Your name and contact information will not be connected to any of your
responses on the questionnaire or focus group.

[Collect name and phone number of those interested in receiving further information.]

81
Appendix E: Focus Group Script 2 (Spanish Version)

Bienvenidos todos, y gracias por tomar el tiempo para ayudarnos con este proyecto. Mi nombre es Carlos
Rodríguez, y soy un estudiante doctoral en el Departamento de Psicología de USC.

Empezaremos hoy por distribuir un cuestionario, y cuando todos hayan terminado de llenarlo,
empezaremos con el grupo de enfoque. Todas sus respuestas, tanto en el cuestionario como en el grupo de
hoy, no serán compartidas con nadie fuera del equipo de investigación. Por favor, no escriba su nombre en
el cuestionario. ¿Hay preguntas? OK, vamos a comenzar. Voy a distribuir el cuestionario y unos lápices.
Lean las instrucciones y comiencen a contestar las preguntas. Levanten la mano si tienen una pregunta.
Cuando hayan terminado, acérquense y depositen el cuestionario rellenado en la abertura de esta caja.

[Hand out Alzheimer’s Disease Knowledge Scale short form with demographics.]

¡Magnífico! Ya que hemos terminado, podemos comenzar con el grupo de enfoque.

Recuerden, no se establecerá relación entre lo que digan aquí hoy y su identidad. Para asegurarlo, por favor
no identifiquen a ningún individuo usando su nombre y apellido. También, cuando quieran expresar su
opinión, les ruego sean corteses y respetuosos esperando que la persona que tenga la palabra termine de
hablar. De esta manera, tendremos la oportunidad de escuchar el punto de vista de todos. Haré una pregunta
a la vez, y cuando todos en el grupo hayan respondido, podremos pasar a la próxima pregunta. Hay 8
preguntas en total, y para no demorarnos demasiado, quizás los interrumpa para pasar a la próxima
pregunta.

[Begin audio recording.]

1. Imagínese que un familiar mayor suyo, tiene 75 años y vive en los EE.UU. Recientemente ha comenzado
a ser olvidadiza. Confunde los nombres de la gente, incluso los que ella conoce bien. A menudo parece
no ser capaz de recordar cosas de un momento a otro. Un ejemplo fue cuando salió al mercado a comprar
alimentos y volvio sin nada, después de haber olvidado la razón por la que salió. Cuando conversa repite
las cosas, y siempre habla del pasado. Su familia notó el problema por primera vez hace un año. Desde
entonces, el problema se ha estado volviendo peór. ¿Qué creen ustedes que le está ocurriendo a ese
familiar? ¿Qué otras palabras han usado ustedes u otras personas para referirse a lo que le esta pasando a
ese familiar? ¿Está ese familiar experimentando un trastorno físico, trastorno mental, la combinación de
un trastorno físico y mental, u otro tipo de trastorno o ningun trastorno?

Quizás alguno de ustedes habra tenido un miembro de la familia como esta persona. De modo que cuando
sea pertinente, por favor compartan sus experiencias: ¿cómo les fue cuando trataron de entender lo que
estaba mal con la persona y cómo consiguieron ayudarla?

2. ¿Cómo mas puede alguien como esta persona actuar diferente a una persona que no tiene este problema?
a. ¿Qué otras cosas puede hacer una persona que los llevaría a pensar que sufre de este problema?
b. ¿Cómo se diferencia esto de cambios en la memoria y el pensamiento que ustedes consideran
normales y naturales en las personas que envejecen?

3. ¿Cuál es la diferencia entre la enfermedad de Alzheimer y demencia (or use their words)?

4. ¿Cuál es el porcentaje de personas que sufren de demencia (or use their words)?
a. Si viviéramos bastantes años, ¿es qué todos padeceríamos de demencia (or use their words)?

5. ¿Qué causa la demencia (or use their words)?
a. ¿Por qué es que algunas personas sufren de demencia (or use their words) y otras no?
82
6. ¿Qué harían ustedes si un miembro de su familia empezara a [use participants’ examples of dementia
behaviors].
a. ¿Dónde recurrirían primero si creyeran que un miembro de su familia tuviera
demencia (or use their words)?

7. Nadie mencionó llevar al miembro de familia al doctor.
a. ¿Cuáles son los beneficios de que un doctor determine si el miembro de familia tiene demencia (or use
their words)?

8. ¿Cuáles son los recursos disponibles para ayudar a alguien con demencia?
a. ¿Qué tratamientos existen para la demencia (or use their words)?
b. ¿Cómo cuidarían sus familiares a un miembro de familia con demencia (or use their words)?
c. ¿A dónde acudirían ustedes para conseguir ayuda y poder cuidar de una persona con demencia (or use
their words)?

9. ¿Hay algo que ustedes pudieran hacer para que sea menos probable que ustedes o un miembro de su
familia padeciera de demencia (or use their words)?
a. ¿Qué tipo de cosas pudieran hacer?

10. Para aprender más acerca de las causas de la demencia (or use their words), los métodos para tratar la
enfermedad y quizás eventualmente curarla, y cómo prevenir la demencia (or use their words), es
necesario hacer investigaciones. ¿Cómo podemos lograr que más personas participen en estudios de
investigación sobre la demencia (or use their words)?

[End audio recording].

Muchísimas gracias a todos por ayudarnos con este proyecto.

[Pass out gift cards].

Si tienen preguntas sobre problemas de la memoria y la demencia (or use their words), podemos contestar
algunas ahora. De lo contrario, pueden dejarnos su nombre y número de teléfono, y nos comunicaremos
con ustedes con más información sobre la demencia (or use their words), los resultados de este estudio, o su
participación en investigaciones actuales o futuras. Su nombre y demás información personal no se
identificará con ninguna respuesta suya en el cuestionario o grupo de enfoque.

[Collect name and phone number of those interested in receiving further information].

Asset Metadata

Creator Rodriguez, Carlos Alberto (author)

Core Title Perceptions of dementia among Latinos

Contributor Electronically uploaded by the author (provenance)

School College of Letters, Arts and Sciences

Degree Master of Arts

Degree Program Psychology

Publication Date 04/26/2011

Defense Date 02/28/2011

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag Health and Environmental Sciences,OAI-PMH Harvest,Psychology,Social Sciences

Place Name California (states), Los Angeles (city or populated place), USA (countries)

Language English

Advisor Gatz, Margaret (committee chair), Farver, Jo Ann M. (committee member), Lopez, Steven (committee member)

Creator Email o1rhyno@hotmail.com,rodrigca@usc.edu

Permanent Link (DOI) https://doi.org/10.25549/usctheses-m3772

Unique identifier UC1439455

Identifier etd-Rodriguez-4173 (filename),usctheses-m40 (legacy collection record id),usctheses-c127-442945 (legacy record id),usctheses-m3772 (legacy record id)

Legacy Identifier etd-Rodriguez-4173.pdf

Dmrecord 442945

Document Type Thesis

Rights Rodriguez, Carlos Alberto

Type texts

Source University of Southern California (contributing entity), University of Southern California Dissertations and Theses (collection)

Repository Name Libraries, University of Southern California

Repository Location Los Angeles, California

Repository Email uscdl@usc.edu

Abstract (if available)

Abstract The current study examined knowledge and perceptions of dementia among a convenience sample of 40 community-dwelling adult Latinos using the Alzheimer’s Disease Knowledge Scale (ADKS) and focus group interviews asking questions regarding the idioms, behavioral signs, etiology, risk and protective factors, help-seeking, and available treatments for dementia. The current sample had poorer knowledge scores on the ADKS than the standardization sample. Common themes from the qualitative data included: the belief that dementia is a normal part of aging, a lack of knowledge of specific treatments despite a recognition that seeking a medical diagnosis leads to the best treatment, overestimation of reported risk and protective factors of dementia, and little knowledge of the earliest signs of dementia. Participants also commonly described dementia as a loss of memories, and placed a high value on the family participating in dementia care. Risk indicators of low dementia literacy were low years of education, Spanish language preference, and fewer years of residence in the U.S., suggesting acculturation as an indicator of better dementia literacy among Latinos.

Linked assets

University of Southern California Dissertations and Theses