Older Primary Care Patients’ Attitudes and Willingness to Screen for Dementia
Hindawi Publishing Corporation
Journal of Aging Research
Older Primary Care Patients' Attitudes and Willingness to Screen for Dementia
Nicole R. Fowler 0 1 2
Anthony J. Perkins 1 2
Hilary A. Turchan 1 2
Amie Frame 1 2
Patrick Monahan 0 3
Sujuan Gao 0 3
Malaz A. Boustani 0 1 2
0 Indiana University School of Medicine , Indianapolis, IN 46202 , USA
1 Regenstrief Institute, Inc. , Indianapolis, IN 46202 , USA
2 Indiana University Center for Aging Research , Indianapolis, IN 46202 , USA
3 Indiana University Department of Biostatistics , Indianapolis, IN 46202 , USA
Objective. To understand older primary care patients' perceptions of the risks and benefits of dementia screening and to measure the association between attitudes and screening behaviors. Methods. Eligible patients completed the Perceptions Regarding Investigational Screening for Memory in Primary Care (PRISM-PC) questionnaire and then were asked to undergo dementia screening by a telephone screening instrument. Results. Higher scores on the PRISM-PC questionnaire items that measure attitudes about benefits of screening were associated with decreased odds of refusing screening. Participants who refused screening had significantly lower PRISM-PC questionnaire scores on the items that measure perceived benefits compared to those who agreed to screening. Participants who refused screening were less likely to agree on screening for other conditions, such as depression and cancer. Participants who know someone with Alzheimer's disease (AD) were less likely to refuse screening. Discussion. Patients' attitudes about the benefits of dementia screening are associated with their acceptance of dementia screening.
It is estimated that by 2050 there will be 11 to 19 million people
in the United States of America (USA) living with dementia
. The incidence of dementia is also growing globally with a
new patient being diagnosed approximately every 7 seconds
. Although there is currently no cure or proven prevention
strategies for dementia, pharmacological and
nonpharmacological interventions are available that may impact the
symptoms of dementia [3, 4].
Despite rising incidence rates, many patients with
dementia go unrecognized and never receive a cognitive evaluation
or diagnosis. Estimates of undiagnosed dementia among
older adults in the USA range from 45% to 80% [3, 5–7]. In
2013 the United States Preventive Services Task Force
(USPSTF) concluded that the evidence to routinely screen for
dementia in primary care is insufficient due to a lack of studies
evaluating the risks, benefits, and patient perspectives of
the value of dementia screening . Understanding patients’
attitudes about the risks and benefits of early identification
of dementia is vital to assess the value of population-based
dementia screening. In addition, this information allows for a
better understanding of potential barriers and facilitators in
the implementation of dementia screening programs in
primary care settings .
The Perceptions Regarding Investigational Screening for
Memory in Primary Care (PRISM-PC) questionnaire was
developed by researchers at the Indiana University Center for
Aging Research to identify the attitudes of older adults
regarding screening for dementia in primary care. The
purpose of this study is to understand primary care patients’
perceptions of the risks and benefits of screening and early
identification of dementia and to measure the association between
patients’ attitudes and behaviors of screening . Based on
our previous work, we hypothesized that many patients
would report perceived benefits of early identification of
dementia and that patient’s acceptance of screening would be
associated with the belief that early identification improves
the patient-centered outcomes of the disease. Conversely, we
hypothesized that refusal to be screened would be associated
with the fear that early detection would result in being
stigmatized or the loss of independence.
2.1. Study Population. Eligible patients were 65 years and
older, had no diagnosis of dementia, had seen their primary
care physician within the previous 12 months, and received
their primary care at either St. Vincent Health or Community
Health Network, both of which are located in Indianapolis,
IN. Patients were excluded if they did not speak English, had
hearing loss that precluded them from communicating via
telephone, and had severe mental illness indicated in their
medical record. T his study was approved by the Institutional
Review Boards of St. Vincent Hospital and the Community
The research team obtained a list of eligible patients
from the St. Vincent Health and Community Heath primary
care office staff and appointment scheduling records. Eligible
patients at the two sites were approached by telephone and
offered the opportunity to participate in the study by research
assistants from the Indiana University Center for Aging
Research. All recruitment procedures complied with the
Health Insurance Portability and Accountability Act and
Institutional Review Board regulations. Informed consent
was obtained from all patients who agreed to participate in
2.2. Study Procedures and Instruments. The study uses The
Perceptions Regarding Investigational Screening for Memory
in Primary Care (PRISM-PC) questionnaire to measure
patient’s attitudes and perceived harms and benefits of
screening for dementia. The PRISM-PC questionnaire includes 50
items with 12 items of capturing self-reported
sociodemographic data and information regarding a participant’s
experience with or exposure to Alzheimer’s disease and 38 items
measuring the participant’s perceptions of the acceptability,
harms, and benefits of dementia screening. The PRISM-PC
questionnaire uses the term Alzheimer’s disease as a
substitute for dementia since previous studies have shown that
patients are more familiar with the term “Alzheimer’s disease”
than “dementia.” Each item of the questionnaire is scored on
a 1- to 5-point Likert scale with possible responses of strongly
agree, agree, do not know, disagree, and strongly disagree
for the following domains: benefits of dementia screening
(8 items), stigma of dementia screening (10 items), negative
effect of dementia screening on independence (6 items),
suffering related to dementia screening (4 items), perceived
acceptance of different types of dementia screening (6 items),
perceived acceptance of screening for other conditions—
colon cancer and depression (2 items), and the belief that a
treatment for Alzheimer’s disease is not currently available (2
IU-PBRN research assistants approached eligible
individuals via telephone and explained the study. After
obtaining consent, research assistant administered the PRISM-PC
questionnaire and asked participants to undergo dementia
screening. If participants agreed to screening, it was
conducted during the same phone interview using the Telephone
Instrument for Cognitive Screening (TICS). Participants who
scored ≤ 30 screened positive for dementia and were referred
to a specialist at either St. Vincent Health or Community
Health Network for an evaluation and diagnostic assessment.
2.3. Statistical Analyses. Prior to conducting the analyses,
responses on the PRISM-PC questionnaire were
reversecoded so that a higher score indicated stronger agreement on
the items. To facilitate interpretation of the domain scores, we
used a similar approach that is used to analyze scale scores on
the SF-36 . We converted all domains to the same metric
by taking the sum of the reverse-coded responses and then
transforming the sum to a 0 to 100 scale by subtracting the
minimum possible score and dividing by the possible range.
For a given domain, this meant that 0 represented strongly
disagree on all items, 100 represented strongly agree on all
items, and 50 represented neutral scores on all items.
For comparisons of groups of participants, we used tests
if the variables were continuous and Fisher’s exact tests if the
variables were categorical. To model the association of the
PRISM-PC questionnaire domains with the dependent
variable (acceptance versus refusal of telephone screening with
the TICS), we used logistic regression and adjusted for
covariates found to be significant or marginally significant ( <
0.10) in bivariate analyses. We reported the results in terms
of odds ratios (ORs) and confidence intervals (CIs).
To determine if the scales derived from the phone
administration of the PRISM-PC questionnaire showed the same
internal consistency from prior studies when the
PRISMPC questionnaire was administered in person, we calculated
Cronbach’s alpha for each scale and compared it to previously
published PRSIM-PC questionnaire findings . For all
statistical analyses, we used SAS statistical software version 9.3
(SAS Institute Inc., Cary, North Carolina).
Sociodemographic characteristics and participants’
experience with Alzheimer’s disease are presented by study site in
Table 1. There were no significant differences between the two
study sites regarding prior experience with Alzheimer’s
disease. There were several significant differences between sites
in sociodemographic characteristics. Participants from St.
Vincent Health were significantly more likely to be married
( < 0.05 ), have higher levels of education ( < 0.01 ), and
more likely to be African American ( < 0.001 ). Community
Health Network participants tended to be older ( = 0.05 )
and more likely to live alone ( = 0.06 ).
Cronbach’s alphas for the PRISM-PC questionnaire
domain scales at the St. Vincent Health site were 0.85 for
benefits of dementia screening, 0.74 for stigma, 0.72 for loss of
independence, and 0.61 for suffering. Cronbach’s alphas for
St. Vincent Health ( = 278 )
Number (%) Number (%)
173 (62.2) 105 (37.8)
Community Health Network ( = 122 )
Number (%) Number (%)
78 (63.9) 44 (36.1)
St. Vincent Health ( = 278 )
Community Health Network ( = 122 )
aBecause our early work indicated that patients more readily understood the term “Alzheimer’s disease” than the term “dementia,” in this study we used
Alzheimer’s disease as a proxy for dementia.
St. V. Health
Mean score (SD)
Mean score (SD)
Are you taking medication to
help with memory?
Domains and individual itemsa
Domain: benefits of dementia
Domain: stigma of dementia
Domain: negative impact of
dementia screening on
Domain: suffering related to
Item in no domain: agreement
with screening for colon cancer
Item in no domain: agreement
with screening for depression
Item in no domain: belief that a
treatment for Alzheimer’s disease
is not currently available
PRISM-PC: Perceptions Regarding Investigational Screening for Memory in Primary Care.
aFor each domain, the table includes the individual item that was most relevant to our study objectives. The table also includes the 3 individual items that are
not covered under any domain.
the Community Health Network sample were 0.81 for
benefits, 0.78 for stigma, 0.78 for loss of independence, and 0.47 for
suf fering. T hese Cronbach alphas are comparable to or greater
than the Cronbach alphas calculated from similar samples
and in previously published PRISM-PC questionnaire studies
when patients completed the PRISM-PC questionnaire in
person and were asked to undergo dementia screening in
person [10, 12].
The associations of demographic characteristics and prior
AD experience with screening refusal are presented by site in
Table 2. Overall there were no significant differences between
dementia screening refusal at the two sites, 37.7% at St.
Vincent and 36.1% at Community ( = 0.746 ). The only
demographic variable significantly associated with screening
refusal at the St. Vincent Health site was education. At St.
Vincent Health only, participants with less than a high school
education were more likely to refuse screening than the
participants with at least a high school education. At both
sites, participants without a relative or friend with AD were
significantly more likely to refuse the screening (St. Vincent
Health 45.8% versus 28.2%; = 0.003 and Community
Health Network 42.1% versus 26.1%; = 0.074 ).
The association between screening refusal and the four
domains on the PRISM-PC questionnaire and on individual
questionnaire items are presented in Table 3. For both sites,
participants who refused screening had significantly lower
scores on the benefits domain than participants who agreed to
screening. In addition, participants who refused screening at
both sites were less likely to agree to question on the
PRISMPC questionnaire regarding annual screening for depression.
At the Community Health Network site, participants who
refused screening had significantly lower scores on the
suffering domain, meaning they were more likely to agree on
the items related to suffering as a result of screening for
( = 173 )
( = 105 )
( = 78 )
PRISM-PC questionnaire items
High domain score:
perception that dementia
screening is beneficial
High domain score: suffering
related to dementia screening
Perception that depression
screening is beneficial
Have a relative or friend with
65–69 (reference group)
(95% confidence interval)
0.80 (0.70, 0.91)
1.07 (0.97, 1.18)
0.80 (0.62, 1.04)
0.51 (0.30, 0.87)
1.14 (0.64, 2.02)
0.19 (0.05, 0.82)
0.69 (0.32, 1.49)
1.17 (0.56, 2.45)
0.90 (0.44, 1.82)
St. Vincent Health
Community Health Network
(95% confidence interval)
0.79 (0.63, 0.98)
0.89 (0.73, 1.08)
0.63 (0.40, 0.99)
0.43 (0.16, 1.12)
2.18 (0.87, 5.44)
1.38 (0.36, 5.25)
1.71 (0.42, 6.93)
1.02 (0.24, 4.74)
2.01 (0.56, 7.25)
PRISM-PC, Perceptions Regarding Investigational Screening for Memory in Primary Care.
aOdds ratios report a 5-point difference in the scale score.
In our study of primary care patients at two different
Indianapolis health care centers, we found that, despite different
sociodemographic characteristics, predictors of who accepts
and who declines dementia screening are similar. In this
study, where participants completed the PRISM-PC
questionnaire and dementia screening by phone, perceptions
about the benefits of early identification remained a
significant predictor of screening acceptance as did having a friend
or relative with dementia. These results are consistent with
previous studies that have administered the PRISM-PC
questionnaire in person and administered dementia screening in
Findings form this study corroborate previous results that
have shown that people’s perceptions about the benefits of
dementia screening are associated with their willingness to
be screened. For example, the participants who had stronger
agreement on the statements regarding the benefits of
knowing about dementia earlier (e.g., ability to plan for the future)
were more likely to accept screening. Of the various items of
sociodemographic data that were gathered for our study, only
level of education at the St. Vincent’s Health System site was
highly predictive of agreeing to be screened. The participants
from the St. Vincent’s Health System with less than a high
school education were more likely to refuse screening than
those with more than a high school education.
This study is the first to measure attitudes about
dementia screening with the PRISM-PC questionnaire and offer
screening by phone. The internal consistency reliability of the
domain scales as measured by Cohen’s Kappa was similar
to those obtained from face-to-face administration of the
PRISM-PC questionnaire and to those obtained in prior
studies. In our sample, more than half (63.7%) of older
primary care patients agreed to be screened for dementia by
phone following completion of the PRISM-PC questionnaire.
Despite the majority of participants agreeing, this rate is
significantly less than our previous work that has found rates of
people willing to be screened as high as 89.7% when we
approached in person and screened in person .
A limitation of this study is that we do not know if
participants had been screened for dementia as part of routine
care, prior to being recruited for this study. However, none
had a dementia diagnosis and less than 2% reported being
told by their physician that they had memory problems.
In summary, the PRISM-PC questionnaire instrument is
a valid tool to assess older primary care patients’
perceptions about dementia screening, even when administered by
phone. Across our work, in this study and others, belief in
the benefits of recognizing dementia early is an important
predictor of patient behaviors regarding screening and could
be used in interventions designed to increase the uptake of
Conflict of Interests
The authors declare that there is no conflict of interests
regarding the publication of this paper.
This work was supported by NIA (R01AG029884).
The authors would like to thank Laura Holtz for her assistance
in preparation for this paper.
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