Four Common Beliefs About Patient Memory Evaluations: Who Has Them and What Modifies Them?

Abstract

Understanding public beliefs about patients at memory centers may inform efforts to promote early diagnosis and guide clinical discussions of Alzheimer’s disease (AD). Adults (N=3,527) read a vignette describing a fictional person at a memory center and rated the person’s condition as a mental illness, part of typical aging, and psychological or biological origins. Vignettes varied by AD biomarker result, symptom stage, and treatment availability. Participants most strongly believed that the condition was part of typical aging and biological in origin, though beliefs varied across subgroups. Black and Asian participants reported stronger beliefs than White participants that the condition was a mental illness (β=0.39, P<0.001) and psychological (β=0.46, P<0.001). Men reported stronger beliefs that the condition was a mental illness (β=0.19, P<0.001), psychological (β=0.14, P<0.001), and part of typical aging (β=-0.08, P=0.04). Biomarker positivity heightened biological and lowered psychological attributions (all P<0.05). The findings offer specific insights to guide intervention.

Keywords

Alzheimer’s disease memory evaluation beliefs race gender

Introduction

Alzheimer’s disease (AD) is a debilitating neurodegenerative disease. Early diagnosis is key to effectively treating and managing the characteristic cognitive and functional impairments associated with AD dementia. Beliefs about AD can influence whether people recognize its symptoms, seek diagnosis, and how they manage their health.¹ For example, people may not seek medical care if they believe the symptoms of AD dementia are a part of typical aging. The goal of this study was to examine beliefs about four characteristics that are often central to understanding how people think about a disease. The findings may help understand what guidance may be needed to support the public in seeking early diagnosis and care for AD dementia and other memory conditions.

To date, most of the research examining beliefs about AD have focused on general perceptions about the disease or people with a dementia diagnosis.^2,3 However, it may also be useful to understand the public’s beliefs about older adults who have not yet been diagnosed with AD dementia, but who are seeking a medical evaluation for memory problems. Their beliefs about the types of conditions that can lead a person to seek an evaluation at a memory center may be instructive for understanding the reasoning associated with decisions to seek out early diagnosis either for themselves or their loved ones.

In the current study, we evaluate people’s beliefs about the condition of a person seeking care at a memory center, which is a key point of entry into the healthcare system for people with AD and other types of dementia.⁴ Our goal was to understand the distributions of four beliefs about a person who is seeking care at a memory center. These beliefs included that: 1) the person had a mental illness; 2) the condition was psychological in origin; 3) the condition was biological in origin; and 4) the condition as a normal part of aging. We discuss our findings in the context of how the emerging model of AD, which is a conceptual framework that classifies AD as a unique biological cause of the signs, symptoms,^5,6 and neurodegenerative sequelae associated with dementia, may impact these public perceptions.

First, we examined how strongly people believed that the condition of the person seeking care at a memory clinic was a typical part of aging. The idea that memory problems are a part of typical aging has been described as a common myth among the public.^7-10 This belief may arise from the perceived similarities between typical age-related cognitive changes and dementia-related cognitive decline.¹¹ Older age is associated with age-related cognitive changes and is also the greatest risk factor for developing AD dementia.¹² Problematically, viewing memory problems as a part of typical aging can be a barrier to seeking diagnosis^7,8 as it may delay the pursuit of needed care.^13,14 Therefore, understanding how the belief that a person would seek care at a memory center for a condition that was a typical part of aging varies in the public may be informative to campaigns to promote early diagnosis and care for AD dementia and other memory conditions.

Second, we examined the belief that the person seeking care at a memory center had a condition that was more or less biological in nature, and we tested whether reporting of this belief is affected by the methods used to diagnose and treat AD. Recent advances in biomarker testing are allowing researchers and clinicians to identify proteins and other biological markers associated with AD.⁵ In the case of a positive biomarker test result, the public may report a stronger belief that the condition is biological. Understanding whether this is how the public reacts would be helpful for anticipating clinical consequences of biomarker testing. If a positive biomarker result engenders fatalistic feelings of inevitability, the belief could discourage adherence to clinical recommendations for intervention, such as steps to reduce modifiable risk factors of AD dementia.

Third, we examined the belief that the person seeking care at a memory center had a condition that was psychological in origin, which is often contrasted with the belief that a condition is biological. In fact, people readily distinguish the mechanisms of a condition as being more or less psychological and biological, reflecting a perception that these framings involve different content and structure.^15-17 While this parsing of ideas is inconsistent with current scientific and medical understandings of disease, it is common¹⁸ and affects individuals’ perceptions.^19-21 Belief that a condition is psychological can be associated with judgments that the condition’s course or prognosis is modifiable.²² Thus, high inverse correlation of beliefs that a condition is biological and not psychological might reflect a worst-case scenario, whereby the public believes that little can be done to avoid getting the disease or to change the disease’s course.

Fourth, we examined the belief that the person seeking care at a memory center had a mental illness, which refers to a condition that affects a person’s thinking, feeling, mood, or behavior, and is a common model of disease in the public. Research has shown that a stronger belief that a condition is a mental illness correlates with judgments of more severe symptoms and a worse prognosis, as well as expectations of greater impairment in social skills.^23-27 For instance, in a prior survey study conducted with 2,000 American adults, 35% believed that AD constituted a mental illness; these participants also tended to perceive the disease’s symptoms as more severe than those who did not hold this belief.²² Thus, among members of the public, a stronger belief that a condition is a mental illness might be considered unfavorable and be expected to negatively correlate with the belief that the condition is a typical part of aging.

Age, Gender, and Race Defined Subgroups

The primary aim of this study is to identify beliefs held by the public about the condition of a person seeking care at a memory center. We also consider how these beliefs vary across participant social groups (defined by race, gender, and age) or as a function of clinical characteristics of the person seeking the medical evaluation (e.g., symptom severity, AD biomarker test result, treatment availability). These social groupings are associated with disparities in AD diagnosis,²⁸ including rates of diagnosis and the stage of disease at time of diagnosis.^29,30 These clinical characteristics are pertinent to an intervention strategy that relies on a biomarker test to diagnose AD early in the disease and then to prescribe disease-slowing treatments.^31-33

Prior research on stigma suggests that beliefs surrounding the social process of AD differs across subgroups defined by race, gender, and age.^34-40 Far less is known about how beliefs about AD – the disease itself – differ in these groups. One study showed older participants were relatively more likely to perceive dementia as a mental illness⁴¹ and another study showed that a stronger belief that AD was a mental illness was associated with more worries about structural discrimination and stronger attributions of the severity of symptoms.²² Further study is warranted to understand how the intensity of these beliefs varies across groups defined by race, gender, and age.

Clinical Features of AD Dementia

Prior research has shown that the intensity of all four beliefs in the current study can influence the public’s judgements of AD symptoms,^2,35,42 prognosis,^34,43,44 and attribution of personal responsibility for developing the disease.⁴⁵ In the present study, we aimed to test whether participants’ beliefs about the condition of a person, who is seeking evaluation at a memory center, differ based on three features: 1) a positive versus negative biomarker result; 2) mild, moderate or no dementia symptoms; and 3) available versus unavailable disease modifying treatment. Understanding the effects of these clinical features on individuals’ beliefs is relevant to assessing how recent advances in early diagnosis and disease modifying treatments may impact public perceptions about AD. We hypothesized that a positive biomarker result would correspond to stronger beliefs that the condition is biological and weaker beliefs that the condition is psychological. This hypothesis was based upon prior research showing that a positive (versus negative) biomarker result is associated with stronger harmful attitudes, negative feelings, and expectations of discrimination.⁴² In contrast, based upon prior findings,⁴² we hypothesized that treatment availability would have no significant effect on these beliefs.

Current Study

We conducted a survey of American adults who varied in race, gender, and age to characterize four common beliefs about the condition of a person seeking care at a memory center. Participants in the present study read about a fictional person seeking a medical evaluation at a memory center. The vignette experimentally varied based on AD biomarker result (positive versus negative), treatment availability, and mild or moderate stage symptoms (versus no dementia symptoms).

We assessed the extent participants endorsed each of the four beliefs about the condition of a fictional person seeking evaluation at a memory center. These beliefs included that the condition was: 1) a mental illness; 2) psychological in origin; 3) biological in origin; and 4) a normal part of aging. Our goal was to characterize the four beliefs in the public and examine how the beliefs varied in population subgroups, and how they varied based on certain clinical features of AD. Results from this research may help inform public health campaigns designed to promote early diagnosis of AD and inform clinical discussions with individuals in the diagnostic process.

Methods

Study Design

The study is a vignette-based online experiment.⁴² Data collection occurred between June 11 and July 3, 2019.

Setting and Participant Eligibility

Adults able to read English were invited at random from a large research panel maintained by Qualtrics. Randomly invited panel members consented to participate. The response rate was 53%. The completion rate was 91%. The sample for this current study is a combination of individuals who were either in a sample that was demographically similar to the US adult population (n=1,817) or from oversamples of Black adults (n=855) and older adults (n=855) to create a full sample of 3,527 participants, which was combined for purposes of comparing population subgroups.

Vignettes

All participants were shown a vignette that described a fictional person who presented for a new patient visit at a memory center accompanied by their adult daughter. Simple randomization created a balanced presentation of vignettes that differed based on three main clinical features of the person seeking treatment: 1) AD biomarker test result (positive or negative); 2) dementia symptom stage, defined across six domains memory, orientation, judgment and problem solving, community affairs, home and hobbies, and personal care⁴⁶ that were systematically varied by levels of the Clinical Dementia Rating (CDR) Scale scores (no clinical symptoms, CDR=0), mild stage dementia symptoms (CDR=1), moderate stage dementia symptoms (CDR=2)⁴⁶; and 3) disease-modifying treatment for AD (available or unavailable).

We controlled for the fictional person’s age at three levels (60, 70, or 80 years old) and gender at two levels (man or woman) to counterbalance effects that could be attributed to these characteristics. We opted a priori to not manipulate the fictional person’s race but rather to use data from this study to inform a future study that will experimentally manipulate multiple signals related to race-based discrimination. A sample vignette is presented in Supplemental Material Section A.

Measures

Four questions asked participants to rate the degree to which the condition described in the vignette was primarily of biological origin, primarily of psychological origin, a part of typical aging, and a mental illness from “not at all” (1) to “a very great extent” (5). Higher ratings indicate a higher level of epistemic confidence in the belief (i.e., confidence that the belief is true or the degree to which the participant felt the belief approximated knowledge).⁴⁷ Questions asking about biological and psychological origins of the condition were adapted from Wadley and Haley.⁴⁸ Demographic data were collected using U.S. Census categories. The University of Pennsylvania Institutional Review Board (IRB) deemed exempt all procedures involving human subjects for the “Health Beliefs Study” (#828348).

Statistical Analysis

To aid the usefulness of the study findings, we analyzed two non-independent samples. The first sample, referred to as the representative sample (N=1,817), was recruited to be representative of the US adult population based on age, gender, race, and education. The second sample, referred to as the comparative sample (N=3,527), includes the prior sample combined with oversamples. The oversamples were recruited to facilitate subgroup analyses of the US adult population in terms of demographics that are salient for understanding disease experiences in AD, which include adults 65+, Black Americans, and women.

Means and proportions were used to characterize each sample and the study outcomes in the representative sample and in the demographic groups in the comparative sample. Normal 95% confidence intervals (95% CI) were used to estimate uncertainty in the study estimates. Graphical depictions are presented to aid characterization of the study data. A pairwise correlation matrix was used to describe the associations among the beliefs. Multiple regression was used to assess how an AD biomarker test result (positive or negative), dementia symptom severity (mild or moderate dementia symptoms versus no dementia symptoms), and disease-modifying treatment (available or unavailable) were associated with each belief in the representative sample.

In the comparative sample, multivariate multiple regression was used to assess the associations among the beliefs and participant demographic groups, while adjusting for associations shared among the beliefs. Model residuals were normally distributed. All analyses were balanced for the person described in the vignette based on age (60, 70, or 80 years old) and gender (man or woman). In other words, the study design controlled for these features in the statistical models. Statistical tests were two-sided. P-values <0.05 were considered statistically significant. Analyses were performed in Stata 16 (College Station, TX).

Results

Participant Characteristics

The representative sample was similar to the U.S. population on most assessed characteristics (Table 1). The sample was slightly younger on average, 46.4 versus 48.4, contained a larger percentage of White participants (77.9 versus 59.8), fewer Asian participants (4.2 versus 6.3), fewer individuals who identified with multiple race categories (1.9 versus 13.2), and slightly fewer individuals who identified as Hispanic or Latinx (17.8 versus 20.0). The characteristics of the comparative sample of 3,527 adults that supported analyses of population subgroups are also shown in Table 1.

Table 1.

Characteristics of Representative and Comparative Samples

Participant characteristic	Representative sample (N=1,817)	Comparative sample (N=3,527)	U.S. General adult population
Age, mean (95%CI)	46.4 (45.6 to 47.1)	50.5 (49.6 to 50.9)	48.4
Gender, % (95%CI)
Women	52.3 (50.0 to 54.6)	54.2 (52.6 to 55.9)	50.5
Men	47.4 (45.2 to 49.7)	45.4 (43.7 to 47.0)	49.5
Non-binary or other identification	0.2 (0.1 to 0.5)	0.2 (0.1 to 0.5)	N/A
Race and Ethnicity, % (95%CI)
White	77.9 (75.9 to 79.7)	48.7 (47.2 to 50.2)	59.8
Black	11.6 (10.1 to 13.1)	24.7 (23.4 to 26.0)	12.1
Asian	4.2 (3.4 to 5.3)	2.6 (2.2 to 3.1)	6.3
Other or unknown	4.5 (3.6 to 5.5)	22.6 (21.4 to 23.8)	8.6
Multiple Races^a	1.9 (1.3 to 2.6)	1.4 (1.1 to 1.8)	13.2
Hispanic or Latinx	17.8 (16.1 to 19.7)	11.2 (10.2 to 12.3)	20.0
Education, % (95%CI)
High School/GED or Less	40.7 (38.5 to 43.0)	34.2 (32.7 to 35.8)	39.5
Some College or 2-year Degree	28.3 (26.2 to 30.4)	34.4 (32.9 to 36.0)	28.2
4-year College Degree	21.0 (19.2 to 23.0)	20.1 (18.8 to 21.5)	20.6
Professional Degree	10.0 (8.7 to 11.4)	11.2 (10.2 to 12.3)	11.6
Geographic Region, % (95%CI)
Midwest	20.5 (18.7 to 22.4)	20.8 (19.4 to 22.1)	20.7
Northeast	18.4 (16.7 to 20.2)	18.3 (17.1 to 19.6)	17.6
South	42.8 (40.6 to 45.1)	43.3 (41.7 to 45.0)	38.1
West	18.3 (16.6 to 20.1)	17.6 (16.4 to 18.9)	23.6

Note. 95%CI = 95% confidence interval. Column percentages may not total 100 due to rounding. General population data and geographic regions from U.S. Census Bureau. N/A = data not available from U.S. Census Bureau.

^aParticipants who endorsed more than one race. n=34.

Bivariate Estimates of Personal Beliefs About an Older Adult at a New Patient Visit at a Memory Center

Participants’ belief that the condition depicted in the vignette was part of typical aging, and participants’ belief that the condition was primarily biological in origin were both fairly normally distributed. In contrast, participants’ belief that the condition was a mental illness and belief that the condition was primarily psychological in origin were right-skewed. Rating distributions of the four beliefs in the representative sample are shown in Figure 1.

Figure 1.

Distributions of participant ratings of four beliefs about the condition of a patient at a memory center (N=3,527). Note. The vignette depicted an older adult with his/her daughter at an initial memory clinic visit. Participants were asked to rate the degree the condition described in the vignette was (A) a mental illness, (B) a part of typical aging, (c) psychological in origin, and (D) biological in origin from “not at all” (1) to “a very great extent” (5)

Characterization of Personal Beliefs in the Public

The average ratings of each belief in the sample of 1,817 adults are shown in Table 2. There was substantial variation across the four beliefs with average rating for the belief that the condition depicted in the vignette was part of typical aging was 3.04 (95%CI 2.99 to 3.09), and that it was biological in origin was 2.87 (95%CI 2.82 to 2.93) suggesting these were both widely held beliefs. In contrast, participants’ rating that belief that the condition was primarily psychological in origin (mean=1.98, 95%CI 1.93 to 2.04) and that it was a mental illness (mean = 2.10, 95%CI 2.05 to 2.16) received notably lower ratings, suggesting that these beliefs are less widely held.

Table 2.

Participant Ratings of Beliefs About the Condition of a Fictional Person at a New Patient Memory Center Visit (N=1,817)

Participant characteristic	Belief question
	Mental illness	Typical part of aging	Psychological	Biological
	Mean (95%CI)	Mean (95%CI)	Mean (95%CI)	Mean (95%CI)
Overall	2.10	3.04	1.98	2.87
Overall	(2.05 to 2.16)	(2.99 to 3.09)	(1.93 to 2.04)	(2.82 to 2.93)
Education
High School/GED or Less	2.04	3.02	1.94	2.73
High School/GED or Less	(1.96 to 2.13)	(2.94 to 3.09)	(1.86 to 2.02)	(2.64 to 2.82)
Some College or 2-year Degree	2.17	3.04	2.03	2.81
Some College or 2-year Degree	(2.06 to 2.27)	(2.94 to 3.13)	(1.93 to 2.13)	(2.71 to 2.92)
4-year College Degree	2.12	3.08	1.94	3.01
4-year College Degree	(1.98 to 2.25)	(2.97 to 3.19)	(1.83 to 2.05)	(2.89 to 3.14)
Professional Degree	2.15	3.04	2.12	3.34
Professional Degree	(1.96 to 2.34)	(2.88 to 3.21)	(1.95 to 2.29)	3.17 to 3.50)
Geographic Region
Midwest	1.99	3.01	1.84	2.80
Midwest	(1.87 to 2.12)	(2.90 to 3.12)	(1.74 to 1.95)	(2.67 to 2.93)
Northeast	2.05	3.10	2.00	2.78
Northeast	(1.92 to 2.18)	(2.99 to 3.21	(1.88 to 2.11)	(2.65 to 2.91)
South	2.19	3.06	2.05	2.94
South	(2.10 to 2.28)	(2.98 to 3.13)	(1.97 to 2.13)	(2.85 to 3.02)
West	2.08	2.97	1.97	2.89
West	(1.95 to 2.21)	(2.86 to 3.09)	(1.85 to 2.09)	(2.76 to 3.02)

Note. 95%CI = 95% confidence interval. The vignette depicted an older adult with his/her daughter at an initial memory clinic visit (N=1,817). Participants were asked to rate the degree the condition described in the vignette was (a) a mental illness, (b) a part of typical aging, (c) psychological in origin, and (d) biological in origin from “not at all” (1) to “a very great extent” (5). Geographic Regions from U.S. Census Bureau.

In the representative sample of the US adult population, the strength of the beliefs did not appear to vary notably by education level or geographic region. There were two exceptions. Individuals with professional degrees more strongly believed that the condition described in the vignette was primarily biological in origin compared to all other education levels. In addition, participants residing in the south more strongly believed that the condition described in the vignette was psychological in origin compared to those residing in the midwest, mean 2.05 points (95%CI 1.97 to 2.13) versus mean 1.84 points (95%CI 1.74 to 1.95), respectively.

Multiple Regression of Dementia Clinical Features on Personal Beliefs About the Condition of an Older Adult at a New Patient Visit at a Memory Center

In the representative sample of the US adult population, a positive versus negative AD biomarker result was associated with a stronger belief that the condition of the person seeking evaluation at a memory center was a mental illness (β=0.64, 95%CI 0.46 to 0.82; Table 3) and was biological in origin (β=0.67, 95%CI 0.49 to 0.86). In contrast, a positive versus negative AD biomarker result was associated with a weaker belief that the condition in the vignette was a typical part of aging (β=-0.67, 95%CI -0.83 to -0.51) and was psychological in origin (β=-0.13, 95%CI -0.30 to -0.04).

Table 3.

Multiple Regression Analyses of Beliefs About the Condition of a Fictional Person at a New Patient Visit at a Memory Center by Dementia Clinical Feature (N=1,817)

Dementia clinical feature	Belief question
	Mental illness	Typical part of aging	Psychological	Biological
	Mean difference (95%CI)	Mean difference (95%CI)	Mean difference (95%CI)	Mean difference (95%CI)
	P value	P value	P value	P value
Positive vs. Negative Biomarker Result	0.64***	-0.67***	-0.13*	0.67***
	(0.46 to 0.82)	(-0.83 to -0.51)	(-0.30 to -0.04)	(0.49 to 0.86)
	P<0.001	P<0.001	P=0.01	P<0.001
Treatment Available vs. Unavailable	0.10	-0.16**	0.04	-0.01
	(-0.09 to 0.29)	(-0.33 to 0.01)	(-0.14 to 0.21)	(-0.20 to 0.18)
	P=0.07	P=0.002	P=0.47	P=0.86
Mild Symptoms vs. No Clinical Symptoms	0.42***	-0.11	0.17**	0.32***
	(0.19 to 0.65)	(-0.32 to 0.09)	(-0.05 to 0.38)	(0.09 to 0.55)
	P<0.001	P=0.07	P=0.01	P<0.001
Moderate Symptoms vs. No Clinical Symptoms	0.42***	-0.08	0.08	0.21**
	(0.19 to 0.64)	(-0.28 to 0.13)	(-0.14 to 0.29)	(-0.02 to 0.44)
	P<0.001	P=0.22	P=0.25	P=0.003

Note. 95%CI = 95% confidence interval. Participants were asked to rate the degree the condition described in the vignette was (a) a mental illness, (b) a part of typical aging, (c) psychological in origin, and (d) biological in origin from “not at all” (1) to “a very great extent” (5).

Controlled for participant race, gender, and age.

*P<0.05, **P<0.01, ***P<0.001.

Mild stage dementia symptoms as compared to no dementia symptoms was associated with a stronger belief that the condition in the vignette was a mental illness (β=0.42, 95%CI 0.19 to 0.65), psychological in origin (β=0.17, 95%CI -0.05 to 0.38) and was biological in origin (β=0.32, 95%CI 0.09 to 0.55). In contrast, a statistical trend suggested that mild stage dementia symptoms as compared to no dementia symptoms was associated with a weaker belief that the condition in the vignette was a typical part of aging (β=-0.11, 95%CI -0.32 to 0.09). The pattern of findings was similar in comparisons of moderate stage dementia symptoms to no dementia symptoms.

Availability of a disease-modifying treatment was associated with a weaker belief that the condition was a typical part of aging (β=-0.16, 95%CI -0.33 to 0.01).

Bivariate Comparisons of Key Social Groupings

In bivariate comparisons of the comparative sample, the distributions of the belief ratings varied by race, gender, and age groups (Table 4). Black participants reported stronger beliefs than White participants that the condition in the vignette was a mental illness (mean=2.44, 95%CI 2.36 to 2.52, versus mean=1.96, 95%CI 1.91 to 2.01). They also reported stronger beliefs than White participants that the condition was psychological in origin (mean=2.39, 95%CI 2.31 to 2.46 versus mean=1.82, 95%CI 1.78 to 1.87) and a typical part of aging (mean=3.11, 95%CI 3.05 to 3.18 versus mean=2.94, 95%CI 2.89 to 2.99).

Table 4.

Participant Ratings of Beliefs About the Condition of a Fictional Person at a New Patient Memory Center Visit (N=3,527)

Belief question	Black participants (N=1,131)	White participants (N=2,170)	Men participants (N=1,610)	Women participants (N=1,925)	Age <65 participants (N=2,038)	Age 65+ participants (N=2,369)
Belief question	Mean (95%CI)	Mean (95%CI)	Mean (95%CI)	Mean (95%CI)	Mean (95%CI)	Mean (95%CI)
Mental illness	2.44***	1.96***	2.24***	2.01***	2.30***	1.41***
Mental illness	(2.36 to 2.52)	(1.91 to 2.01)	(2.18 to 2.30)	(1.96 to 2.07)	(2.24 to 2.35)	(1.06 to 1.76)
Typical part of aging	3.11***	2.94***	3.06**	2.95**	3.08***	2.41***
Typical part of aging	(3.05 to 3.18)	(2.89 to 2.99)	(3.01 to 3.11)	(2.90 to 3.00)	(3.04 to 3.13)	(2.06 to 2.77)
Psychological	2.39***	1.82***	2.10***	1.92***	2.19***	1.27***
Psychological	(2.31 to 2.46)	(1.78 to 1.87)	(2.04 to 2.15)	(1.87 to 1.97)	(2.14 to 2.24)	(0.92 to 1.62)
Biological	2.84	2.89	2.95	2.81	2.88***	2.40***
Biological	(2.77 to 2.92)	(2.84 to 2.94)	(2.89 to 3.01)	(2.76 to 2.97)	(2.82 to 2.93)	(2.05 to 2.76)

Note. 95%CI = 95% confidence interval. The vignette depicted an older adult with his/her daughter at an initial memory clinic visit (N=3,527). Participants were asked to rate the degree the condition described in the vignette was (a) a mental illness, (b) a part of typical aging, (c) psychological in origin, and (d) biological in origin from “not at all” (1) to “a very great extent” (5).

**P<0.01, ***P<0.001.

In bivariate comparisons, men reported stronger beliefs than women that the fictional person at the memory center visit had a mental illness (mean=2.24, 95%CI 2.18 to 2.30 versus mean=2.01, 95%CI 1.96 to 2.07). Men also reported stronger beliefs than women that the person’s condition was psychological in origin (mean=2.10, 95%CI 2.04 to 2.15 versus mean=1.92, 95%CI 1.87 to 1.97) and a typical part of aging (mean=3.06, 95%CI 3.01 to 3.11 versus mean=2.95, 95%CI 2.90 to 3.00).

Participants under age 65 reported stronger beliefs than those ages 65 and older that the fictional person at the memory center visit had a mental illness (mean=2.30, 95%CI 2.24 to 2.35 versus mean=1.41, 95%CI 1.06 to 1.76), and that the condition was a typical part of aging (mean=3.08, 95%CI 3.04 to 3.13 versus mean=2.41, 95%CI 2.06 to 2.77). Participants under age 65 also reported stronger beliefs than those ages 65 and older that the condition was psychological in origin (mean=2.19, 95%CI 2.14 to 2.24 versus mean=1.27, 95%CI 0.92 to 1.62) and also that it was biological in origin (mean=2.88, 95%CI 2.82 to 2.93 versus mean=2.40, 95%CI 2.05 to 2.76).

Pairwise Correlation Matrix of Participant Beliefs About an Older Adult at a New Patient Visit at a Memory Center

The four beliefs were highly correlated (Supplemental Table S1). In pairwise correlations, a stronger belief that the person at the memory center visit had a mental illness was highly correlated with the belief that the person’s condition was psychological in origin (r=0.96, P<0.001), biological in origin (r=0.94, P<0.001), and a typical part of aging (r=0.94, P<0.001). On average, participants held weaker beliefs that the person at the memory center visit had a condition that was a mental illness versus a typical part of aging, with a median rating of 2 versus 3, respectively.

A multivariate multiple regression model examined how the correlation among the four beliefs (i.e., shared variance) was predicted by each of the four beliefs. Results from a multivariate multiple regression model showed the belief that the person at the memory center visit had a condition that was psychological in origin explained the most of the shared association among the beliefs (R²=0.07, F(7, 3526)=45.82, P<0.001), followed by the belief that the condition was a mental illness (R²=0.05, F(7, 3526)=31.99, P<0.001). Less of the total shared association was explained by the belief that the condition was a typical part of aging (R²=0.01, F(7, 3526)=7.52, P<0.001) and biological in origin (R²=0.003, F(7, 3526)=2.21, P<0.04). Data not tabled.

Multivariate multiple Regression of Participant Characteristics on Personal Beliefs About the Condition of an Older Adult at a Memory Center Visit

The conclusions from the bivariate analyses (Table 4) were highly similar even when controlling for the respective covariates and shared association among the beliefs (Table 5). There were, however, two exceptions in which the statistical significance of the findings differed between the two analyses. First, in the multivariate model, the difference between the age groups for the belief that the condition was biological in origin did not reach statistical significance. Figure 2 shows mean ratings of each belief by participant age in the comparative sample.

Table 5.

Multivariate Multiple Regression of Participant Characteristics on Beliefs About the Condition of a Fictional Person at a New Patient Visit at a Memory Center (N=3,527)

Participant characteristic	Belief question
	Mental illness	Typical part of aging	Psychological	Biological
	β (95%CI)	β (95%CI)	β (95%CI)	β (95%CI)
	P value	P value	P value	P value
Race^a
Black	0.39***	0.12**	0.46***	-0.05
	(0.29 to 0.48)	(0.04 to 0.20)	(0.38 to 0.55)	(-0.14 to 0.05)
	P<0.001	P=0.005	P<0.001	P=0.323
Asian	0.26*	0.03	0.26*	-0.09
	(0.04 to 0.48)	(-0.15 to 0.24)	(0.06 to 0.45)	(-0.31 to 0.13)
	P=0.018	P=0.744	P=0.014	P=0.510
Other or unknown	-0.16	0.19	-0.06	-0.02
	(-0.39 to 0.07)	(-0.02 to 0.39)	(-0.27 to 0.15)	(-0.25 to 0.21)
	P=0.188	P=0.080	P=0.620	P=0.982
Multiple races	0.33*	-0.16	0.09	0.25
	(0.01 to 0.64)	(-0.44 to 0.12)	(-0.20 to 0.37)	(-0.07 to 0.56)
	P=0.042	P=0.252	P=0.554	P=0.120
Women^b	-0.19***	-0.08*	-0.14***	-0.14**
	(-0.28 to -0.11)	(-0.15 to -0.01)	(-0.21 to -0.07)	(-0.22 to -0.05)
	P<0.001	P=0.043	P<0.001	P=0.003
Age 65+^c	-0.29***	-0.15***	-0.31***	0.01
	(-0.38 to -0.21)	(-0.23 to -0.08)	(-0.39 to -0.23)	(-0.08 to 0.10)
	P<0.001	P<0.001	P<0.001	P=0.91

^aReference group is self-identified White participants.

^bReference group is men.

^cReference group is participants under age 65.

*P<0.05, **P<0.01, ***P<0.001.

Figure 2.

Participant personal beliefs about the condition of a patient at a memory center visit by participant age up to age 65 and older (N=3,527). Note. The vignette depicted an older adult with his/her daughter at an initial memory clinic visit. Participants were asked to rate the degree the condition described in the vignette was (A) a mental illness, (B) a part of typical aging, (c) psychological in origin, and (D) biological in origin from “not at all” (1) to “a very great extent” (5)

Second, in contrast to the bivariate analysis that show no significant difference, women had weaker beliefs than men that the condition was biological in origin (β=-0.14, 95%CI -0.22 to -0.05) in the multivariate model that controlled for race, gender, and covariance among the beliefs.

Discussion

We conducted a study to characterize the public’s beliefs about the condition of a person seeking evaluation at a new patient visit at a memory center. The four beliefs of interest were that the condition was: 1) a typical part of aging; 2) psychological in origin; 3) biological in origin; and 4) a mental illness. In addition, we also examined whether clinical features, such as a positive or negative AD biomarker result or clinical symptoms of dementia, influenced these beliefs and how these beliefs varied in particular population subgroups. The findings offer information to guide population-level interventions related to early AD diagnosis as well as may inform clinical conversations with individuals seeking evaluation or care for memory and thinking problems.

Our results suggest that the public believes that an individual seeking care at a memory center likely has a condition that is biological in origin and that their condition is a typical part of aging. This is a somewhat unexpected finding as the myth that AD and related dementias are a part of typical aging is often discussed in the scientific literature and public campaigns as a barrier to seeking care.^7-10,13,14 Our findings suggest that there may be duality in the interpretation of this belief. While prior studies suggest that this belief positions dementia as a natural part of aging rather than a disease, our findings suggest that this belief also reflects an acknowledgement of the prevalence of dementia – i.e., dementia is a common problem that many individuals must address as they age. This interpretation is supported by the observation in our sample that the strength of the belief persists with increasing age, as individuals experience dementia firsthand in their social networks. Thus, the belief that the condition is a typical part of aging may signal, not a lack of understanding that dementia is a disease, but rather a mental position that the condition is inevitable or determined. The distinction matters as it has implications for whether effective intervention might focus on disease education or strategies of inviting ambiguity. For deterministic beliefs, motivational interviewing or other techniques that foster discrepancies between the deterministic belief and desired behavior create room for change and can be more effective than education.

Both beliefs – that the condition is biological in origin and a typical part of aging – raise the question of whether these beliefs could stagnate individuals’ efforts to reduce modifiable risk factors. It may be useful to challenge the embedded sense of biological essentialism⁴⁹ – 40% of dementia cases worldwide could be prevented by addressing a handful of modifiable risk factors, such as smoking, excessive alcohol use, and physical inactivity.⁵⁰ While our study focused on beliefs arising in reaction to a memory center visit when a person may already have some symptoms, reducing these risk factors can nonetheless improve her clinical outcomes by slowing the progression of cognitive decline and enhancing overall quality of life.

Belief that a person seeking care at a memory center had a mental illness was not common among the public. The reporting of this belief in the current study was low, with a mean of 1.4 out of 5 possible points in participants under age 65. The low reporting might be considered favorable as in a prior study we found that a stronger belief that a condition is a mental illness was associated with attribution of worse symptoms.³⁵

The low reporting might also suggest that the belief a condition is a mental illness may be a key driver of not seeking care at a memory center. As categorized under the Theory of Planned Behavior,⁵¹ this belief may be associated with a person’s perception of the type of care needed and directly shape attitudes to determine if and how care is sought. Efforts to reduce or replace this belief may be an important target in efforts to promote early diagnosis of memory and thinking problems.

Subgroup Differences

While the four beliefs shared similar strength and direction (i.e., high correlation), they were not necessary redundant with one another as they did not have a lot of statistical overlap (i.e., shared variance) in the multivariate models. Interestingly, the belief that overlapped the most with the other beliefs was that the condition of the person in the vignette was psychological in origin, followed by the belief that the condition was a mental illness. These same two beliefs were more common in Black and Asian participants as compared to White. These groups are more likely to be under-represented among memory center patients, even while, in the case of Black Americans, experiencing a disproportionately high burden of AD dementia. Thus, the findings provide further support that these beliefs, particularly belief a condition is a mental illness, may run counter seeking care at a memory center and thus warrant further attention by efforts aimed at promoting early diagnosis. Moreover, while these beliefs may be more or less likely to cluster in certain groups, our data also suggest that each belief warrants being addressed separately, rather than operating under the notion that by addressing one, the others may also be impacted.

We found that the distributions of the four beliefs differed by gender and age. The pattern of the results suggests that men and adults under age 65 may be the least likely to be aware of the value of early diagnosis as they more strongly believed the condition was a mental illness, typical part of aging, and psychological in origin. They were also as likely or less likely to believe the condition was biological in origin. While the risk of AD may be less salient to persons under age 65, this demographic group has a crucial role in facilitating appropriate diagnosis and care for their loved ones who are older adults and for themselves as they age.⁵² The findings suggest the importance of educating family members and the broader public about the value of early diagnosis. This is particularly the case given that the results of this study are consistent with known gender and racial disparities, where men and Black adults are disproportionately underrepresented in AD care and research.^29,30,53

Effects of Clinical Features

We examined how clinical features impacted the four beliefs about the condition of a fictional person at a memory center new patient visit. Our findings raise concerns that the expansion of the emerging biological model of AD will have mixed impacts on the public. On one hand, our results suggest that the presence of an AD biomarker may strengthen public belief that AD is biological in origin, which in turn may heighten the likelihood of people seeking treatment for the disease. On the other hand, a positive AD biomarker test result may weaken public belief that AD is psychological in origin. This in turn may lower the likelihood that individuals will pursue steps to lower their own risk of AD dementia, which is problematic given that some studies estimate as much as 60% of the risk of dementia can be addressed by modifiable risk factors⁵⁴ and lowering modifiable risk factors almost at any stage in disease can help improve outcomes.^55,56 Efforts may be needed to address the apparent incompatibility in the public between biological disease processes and modifiable disease risk.

Our findings suggest that AD biomarker testing and the return of an AD biomarker result could impact what patients believe about the cause and prognosis of their condition, beyond what might be intended by the clinician. In a prior study, we found that when individuals read about a positive versus negative AD biomarker result, it was sufficient to alter their confidence in their own diagnosis.⁵⁷ Our findings in this study suggest a positive test result could heighten beliefs that the condition is biological and is a mental illness while lowering belief the condition is psychological in origin. When clinicians disclose an AD biomarker result to patients, it may be useful to directly discuss what the result does and does not indicate about the person’s current and future health, including the controllability the person has over their own health.

The results of this study seem to substantiate that the public often views conditions that are related to cognition, emotional regulation and behavior, not as general symptoms spanning multiple etiologies, but rather as independent of biological causes.⁵⁸ While, on average, participants held the belief that the condition in the vignette had a biological cause, the belief was normally distributed in the population, suggesting the influence of natural processes rather than conformity to a particular conceptual model. The belief that such conditions are independent of biological causes is inconsistent with that of the American Psychiatric Association and American Psychological Association,⁵⁹ and suggests it may be advantageous for clinicians to address patient beliefs about AD’s etiology when talking about treatment planning, particularly when it involves adherence to lifestyle and behavioral interventions.

Moreover, the subtle difference in what the public believes about the link (or lack thereof) between psychological and biological mechanisms may in part explain why individuals can lack sufficient motivation for behavioral interventions. Motivation for behavioral interventions is often generated from perceiving behaviors as having powerful and direct effects.^60-62 Individuals will not take action unless they believe behavior is efficacious and capable of leading to direct benefit.⁶³ Yet, our findings show that it seems individuals may not connect conditions that can be modified by behavior to also be conditions that have biological causal pathways.

Our findings offer insight into the content of the belief that the condition of the person in the vignette was a typical part of aging. This belief weakened with a positive biomarker result and reciprocally to the belief that the condition was biological in origin. This is interesting as it seems to suggest that the public may view conditions treated at a memory center as common in aging and also fundamentally understand that conditions with biological origins and clinical tests can be more treatable. This clarification is crucial as individual beliefs are often dismissed or viewed pejoratively by clinicians and other experts as being inaccurate. However, this stigma can be damaging to the patient-provider relationship and impede the proper analysis (i.e., content that is false, misconstrued, misapplied, etc.) to determine how the belief aligns with the patient’s clinical goals and what intervention may be needed.

Limitations

Our study had limitations. Our sample was not representative of the U.S. adult population on all assessed characteristics. The sample had more Black or African American representation (22%) than in the general population (14%) and a smaller percentage had a Bachelor’s degree (31%) than in the general adult public (34%).⁶⁴ These and other unmeasured differences may limit the generalizability of our findings to populations with other characteristics. In addition, causal relationships cannot be inferred from our correlational study.

Future Research

The findings from our study have implications for what the public did and did not believe about the conditions of patients evaluated at memory centers. Patterns among these beliefs demonstrated that the public hold specific ideas that can be affected by clinical elements, such as a biomarker test result, and these ideas vary by gender and race. Future studies that can help identify the messages that can alter these beliefs and that evaluate the downstream consequences of these beliefs may help promote early diagnosis for all and limit social disparities in access to care. In addition, future studies are needed that can explore belief patterns associated with memory problems in patients outside of memory centers. In our study, we speculate that beliefs with low representation may be antithetical to the public’s view of care at a memory center and thus impede decisions to seek care at a memory center. Future studies are needed to examine these ideas.

Conclusions

We conducted a study in large samples of the adults to examine four beliefs about the condition of a fictional person seeking evaluation at a memory center. We found differences in the distributions of these beliefs in the public, suggesting they may affect how likely a person is to think that a memory center is an appropriate place of care for a given condition. Moreover, we found that the beliefs were highly correlated and varied by demographic groups defined by age, gender, and race. Common beliefs among the public about patients at memory centers showed informative patterns for men and racialized minorities. In particular, believing a condition was a mental illness may make individuals less likely to seek care at a memory center and these demographic groups were more likely to believe the condition of the person receiving care at a memory center had a mental illness. The findings may guide clinicians’ conversations with patients and families. Addressing beliefs about memory problems and worries about AD may help to alleviate the social burden of seeking care and challenges treatment adherence in order to promote early diagnosis and care for AD dementia and other memory conditions.

Clinical Implications

While dementia may be common in late life, explaining to patients that living with dementia can be made better with proper treatment and care may encourage them to seek evaluation if they begin to experience symptoms.

Talking with patients about the biology of dementia and healthy lifestyle factors, such as diet and exercise, may help them make lifestyle changes early enough to lower their risk of dementia.

Supplemental Material

Supplemental Material - Four Common Beliefs About Patient Memory Evaluations: Who has Them and what Modifies Them?

Supplemental Material for Four Common Beliefs About Patient Memory Evaluations: Who has Them and what Modifies Them? by Shana D. Stites, Carolyn Kuz, Emily A. Largent, Kristin Harkins, MPH, Abba Krieger, Pamela Sankar and Sarah J. Barber in American Journal of Alzheimer’s Disease & Other Dementias®.

Footnotes

ORCID iDs

Carolyn Kuz

Shana D. Stites

Emily A. Largent

Kristin Harkins

Abba Krieger

Pamela Sankar

Sarah J. Barber

Ethical Considerations

The Institutional Review Board of the University of Pennsylvania approved all procedures involving human subjects for the “Health Beliefs Study” (#828348).

Consent to Participate

All participants provided written informed consent prior to participating.

Author Contributions

SDS wrote the initial draft of the article. All authors (SDS, CK, EAL, KH, AK, PS, SJB) contributed to conceptualizing and writing the article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by a grant from the Alzheimer’s Foundation of America [No grant #]; the Alzheimer’s Association [AARF-17-528934], the National Institute on Aging [1K23AG065442, 1K23AG065442-03S1, K01AG064123], and the Greenwall Faculty Scholars Program [No grant #].

Declaration of Conflicting Interests

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

Data Availability Statement

The de-identified data, analytic code, and materials on which the study conclusions are based are available for purposes of replication. A written request may be made to the corresponding author. The data have not been made publicly available as the research team has not completed the planned analyses for publications. Reasoning for the sample size, any data exclusions, all manipulations, and all measures are included in this publication. The study design, hypotheses, and analytic plan were not preregistered.*

Supplemental Material

Supplemental material for this article is available online.

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