1. Introduction
Dementia, encompassing conditions like Alzheimer’s disease, represents a significant public health crisis, profoundly impacting individuals and families both emotionally and financially. Current estimates suggest that millions of Americans are living with dementia, and alarmingly, up to half of these cases remain undiagnosed. This lack of diagnosis means a substantial number of individuals with cognitive impairment are not receiving the care and support they need. For example, among older adults over 70 experiencing cognitive issues, less than half have a documented history of cognitive evaluation, highlighting a major gap in healthcare.
The reasons behind this under-detection are complex. Patients may hesitate or decline diagnostic assessment due to various concerns. These can include fears about social stigma, the misconception that dementia is untreatable, or a general apprehension towards medical evaluations. Caregivers also play a crucial role in this decision-making process, often grappling with accepting a loved one’s cognitive decline and worrying about the personal impact of a dementia diagnosis.
Furthermore, healthcare providers’ attitudes and confidence in conducting cognitive assessments can contribute to under-diagnosis. Primary care physicians, often on the front lines of patient care, may question the immediate clinical value of early dementia diagnosis, especially when treatment options are limited and other pressing health issues demand attention.
Proponents of early dementia identification emphasize the potential benefits of population-based screening. They argue that proactive screening increases the likelihood of diagnosis, leading to timely intervention. Early diagnosis offers several advantages, including the opportunity to rule out reversible causes of cognitive symptoms, improve long-term care by facilitating discussions about prognosis and patient goals, and enhance patient and family preparedness through increased knowledge and confidence in medical decision-making. Despite these potential benefits, the effectiveness of routine dementia screening in primary care in increasing diagnostic rates and improving patient outcomes remains uncertain. Crucially, there’s no evidence suggesting that screening alters the course of dementia progression, and research on patient, caregiver, and physician perspectives on early dementia identification through screening is still limited.
To develop effective, patient-centered strategies for improving early dementia recognition, diagnosis, and patient outcomes, it is essential to understand the attitudes and behaviors of older primary care patients regarding dementia screening and diagnosis. A significant portion of primary care patients, nearly half in some studies, decline cognitive evaluation even after a positive screening test. While factors like race, age, and perceived cognitive decline have been identified as influencing this refusal, the impact of patients’ perceptions about dementia and screening on their willingness to undergo diagnostic assessment needs further investigation.
This study aims to explore older primary care patients’ perceptions of dementia screening. It compares these perceptions between individuals who screened positive for dementia and accepted diagnostic assessment versus those who screened positive but refused further evaluation. Based on previous research, it was hypothesized that patients in the 70-80 age range might be more likely to refuse assessment, and that patients who recognize the benefits of early detection would be more inclined to accept follow-up cognitive evaluation after a positive screening result.
2. Methods
2.1. Study Population
The study recruited participants from Eskenazi Health, an urban healthcare system in Indianapolis, IN, serving a diverse community through 11 primary care centers. Eligible participants were patients aged 65 and older without a prior dementia diagnosis receiving primary care within this system. In 2007, Eskenazi Health provided care to approximately 11,000 older adults, with frequent primary care visits.
Recruitment was facilitated by the Indiana University Practice Based Research Network (IU-PBRN), utilizing informatics tools to streamline patient recruitment for local research. Trained IU-PBRN research assistants approached eligible patients in primary care clinics, ensuring adherence to patient privacy and ethical research protocols, and obtained informed consent from those agreeing to participate. The study received ethical approval from the Indiana University, Purdue University-Indianapolis’s IRB.
2.2. Study Procedures and Instruments
Patient perceptions regarding dementia and screening were assessed through face-to-face interviews using the Perceptions Regarding Investigational Screening for Memory in Primary Care (PRISM-PC) questionnaire. This instrument includes 50 items, covering sociodemographic details, experiences with Alzheimer’s disease, and 38 items specifically designed to measure patient experiences and perceptions of dementia, including benefits and harms of screening, and acceptability of different screening methods. These 38 items employ a 5-point Likert scale, ranging from “strongly agree” to “strongly disagree” (detailed in Supplementary Material). The PRISM-PC questionnaire’s psychometric properties have been previously validated.
Participants initially completed the PRISM-PC questionnaire and were then asked about their willingness to undergo memory screening using either the Community Screening Instrument for Dementia (CSI-D) or the Mini-Mental State Examination (MMSE). The choice of two screening tools was due to a protocol change from a concurrent study in the same clinics.
Patients scoring ≤24 on either MMSE or CSI-D were informed that the screening was not diagnostic and were offered a comprehensive cognitive evaluation and diagnostic assessment at the Healthy Aging Brain Center (HABC) at Eskenazi Health. HABC program coordinators attempted to contact patients who screened positive over a six-month period. The HABC program involves an initial assessment phase, including neurological and physical examinations, neuropsychological testing, blood work, brain imaging, and a diagnostic conference with the patient and family to develop an individualized care plan. The follow-up phase focuses on ongoing monitoring and care plan adjustments in collaboration with the patient, caregiver, HABC team, and the patient’s primary care physician. This study focused on PRISM-PC questionnaire responses from patients who screened positive, comparing those who accepted and refused the cognitive evaluation and diagnostic assessment.
3. Statistical Analyses
Prior to analysis, PRISM-PC responses were reverse-coded so that higher scores indicated stronger agreement. To standardize interpretation across domains, scores were converted to a 0-100 scale. On this scale, 0 represented “strongly disagree” on all items, 100 “strongly agree,” and 50 neutral responses.
Fisher’s exact test was used for categorical variables, and the two-sample t test for continuous variables to compare demographics and PRISM-PC domain scores between groups based on diagnostic assessment acceptance. Logistic regression was employed to model the association of PRISM-PC domains and demographics with refusal of diagnostic assessment, focusing on variables with P-values < .10 in bivariate analyses.
4. Results
Out of 1065 patients approached, 554 (approximately 52%) consented and participated in the study. Non-participants did not significantly differ from participants in age, sex, or race/ethnicity. Of the 554 participants completing the PRISM-PC questionnaire, 497 (almost 90%) agreed to dementia screening, as detailed in prior reports. Among these, 63 (about 13%) screened positive and were referred to HABC for diagnostic assessment. Of those referred, 21 (33.3%) accepted and completed the cognitive evaluation, while 42 (66.7%) refused. Refusal was defined as explicitly declining evaluation or being unreachable for scheduling within six months post-screening.
The majority of participants who screened positive and were referred for diagnostic assessment were female (approximately 62%), African American (about 56%), and had an annual income below $20,000 (nearly 89%). Around half were widowed, 71% had less than a high school education, and 48% lived alone. Table 1 presents sociodemographic comparisons by diagnostic assessment refusal status. Living alone was significantly associated with a higher likelihood of refusing diagnostic assessment. While not statistically significant, individuals with incomes of $10,000 or more were more likely to refuse compared to those with lower incomes, possibly due to sample size limitations and missing income data for 28.6% of the sample.
Table 1. Sociodemographic Characteristics of Participants Accepting and Refusing Dementia Diagnostic Assessment
| Variable | Accepted DA (n=21) No. (%) | Refused DA (n=42) No. (%) | P value |
|---|---|---|---|
| Age Groups (years) | 0.448 | ||
| 65–69 | 4 (19.1) | 15 (35.7) | |
| 70–74 | 7 (33.3) | 8 (19.1) | |
| 75–79 | 6 (28.6) | 10 (23.8) | |
| ≥80 | 4 (19.1) | 9 (21.4) | |
| Gender, Female | 14 (66.7) | 25 (59.5) | 0.784 |
| Race, Non-white | 13 (61.9) | 23 (54.8) | 0.788 |
| Years of Education, 0–11 yrs | 18 (85.7) | 27 (63.3) | 0.138 |
| Lives Alone | 5 (23.8) | 25 (59.5) | 0.008 |
| Marital Status, Married | 7 (33.3) | 8 (19.0) | 0.227 |
| Annual Income | 0.072 | ||
| <$10,000 | 7 (33.3) | 10 (23.8) | |
| $10,000–$19,999 | 4 (19.1) | 24 (57.1) | |
| Missing | 10 (47.6) | 8 (19.1) |
Table 2 and Table 3 present comparisons of PRISM-PC domains and individual items by diagnostic assessment status. Participants refusing diagnostic assessment exhibited significantly higher stigma domain scores on the PRISM-PC compared to those who accepted. Generally, refusal was associated with higher scores across all stigma domain items. No other domain scores showed significant differences between the two groups. However, participants accepting diagnostic assessment were significantly more likely to agree to yearly colorectal cancer screening. Two other items showed marginal significance (0.05 ≤ P < 0.10): agreement with yearly depression screening and disagreement with the belief that Alzheimer’s treatment is unavailable.
Table 2. PRISM-PC Question Responses of Participants Accepting and Refusing Dementia Diagnostic Assessment
| PRISM-PC Items | Accepted DA (n=21) No. (%) | Refused DA (n=42) No. (%) | P value |
|---|---|---|---|
| Relative/Friend with Alzheimer’s? Yes* | 5 (23.8) | 9 (21.4) | 1.000 |
| Higher Alzheimer’s Risk than Peers? Yes | 3 (14.3) | 8 (19.0) | 0.738 |
| More Memory Problems than Peers? Yes | 6 (28.6) | 8 (19.0) | 0.349 |
| Doctor Said Memory Problems? Yes | 1 (4.8) | 1 (2.4) | 1.000 |
| Taking Memory Medication? Yes | 1 (4.8) | 1 (2.4) | 1.000 |
*“Alzheimer’s disease” used as a proxy for dementia for clarity based on prior research.
Table 3. PRISM-PC Scale Comparisons: Accepted vs. Refused Dementia Diagnostic Assessment
| PRISM-PC Domains | Accepted DA Mean (SD) (n=21) | Refused DA Mean (SD) (n=42) | P value |
|---|---|---|---|
| Acceptance of Dementia Screening | 67.6 (13.3) | 60.9 (17.6) | 0.128 |
| Benefits of Dementia Screening | 73.5 (9.5) | 70.8 (11.2) | 0.339 |
| Stigma of Dementia Screening | 35.2 (10.7) | 42.0 (13.1) | 0.045 |
| Negative Impact on Independence | 47.7 (14.2) | 51.8 (16.2) | 0.318 |
| Suffering Related to Dementia Screening | 50.9 (19.2) | 51.3 (13.3) | 0.921 |
| Individual Questions (Not Domain Scores) | |||
| Acceptance with Colorectal Cancer Screening | 4.0 (0.5) | 3.5 (0.9) | 0.047 |
| Acceptance with Depression Screening | 3.8 (0.8) | 3.5 (0.9) | 0.361 |
| Belief: No Current Alzheimer’s Treatment Available | 2.5 (0.9) | 2.9 (0.9) | 0.059 |
In a final adjusted logistic regression model predicting refusal of diagnostic assessment, three variables were statistically significant. Higher stigma domain scores (Adjusted Odds Ratio [AOR] per 5-point increase 1.43, 95% Confidence Interval [CI] 1.04–1.98) and living alone (AOR 7.28, 95% CI 1.81–29.29) were associated with increased odds of refusal. Conversely, greater agreement with colorectal cancer screening was associated with decreased odds of refusing dementia diagnostic assessment (AOR 0.25, 95% CI 0.07–0.90).
5. Discussion
This research is pioneering in examining the link between older primary care patients’ attitudes towards dementia screening and their subsequent behavior regarding cognitive evaluations after a positive screening result. A significant majority (66.7%) of participants who screened positive declined follow-up cognitive evaluation and diagnostic assessment. Notably, patients’ perceptions of stigma related to dementia and dementia screening were associated with this refusal.
These findings are particularly relevant given the widespread under-diagnosis of dementia and the substantial proportion of older adults with dementia who never undergo cognitive evaluation. Early interventions and educational initiatives targeting patients and caregivers about dementia and dementia screening, especially those addressing perceived stigmas, could significantly increase the number of patients seeking diagnostic assessment.
Living alone emerged as the only sociodemographic factor significantly associated with refusal. This aligns with other studies indicating a correlation between marital status and rates of cognitive evaluations and diagnoses. Approximately half of the participants eligible for diagnostic assessment were widowed. Although not statistically significant in bivariate analysis, unmarried patients showed higher refusal rates than married individuals, reinforcing prior research suggesting that patients with identified caregivers, and the caregivers themselves, strongly desire information about dementia diagnosis. This collective evidence suggests that individuals without a potential caregiver may be less likely to pursue cognitive evaluation and diagnostic assessment, potentially due to heightened stigma perception. This might stem from a concern that formal identification of cognitive impairment could lead to loss of independence, such as driving. Typically, a cohabitating partner assumes the caregiver role for dementia patients. The absence of a caregiver can leave patients without crucial physical and social support, which are vital for various health outcomes.
Patients who accepted cognitive evaluation and diagnostic assessment were more likely to agree with undergoing colorectal cancer screening. This may indicate a broader positive attitude towards health screenings in general, or a recognition that both dementia and colorectal diseases are age-related health concerns requiring attention. Previous studies have shown that limited knowledge about dementia, its causes, and symptoms acts as a significant barrier to diagnosis. Intriguingly, prior research has also indicated that patients attributing cognitive decline to normal aging might deter them from seeking diagnosis and further information.
Study limitations include a relatively small sample size, potentially impacting generalizability. However, despite this limitation and reduced statistical power, several significant relationships were identified. The low positive screening rate (12.7%) and even smaller number completing diagnostic assessment also constrain the sample size for analysis of refusal. Considering the study’s findings, it is noteworthy that the relationship between patients’ perceptions of dementia screening’s impact on independence and their decision to refuse assessment was not significant, possibly due to the small sample size, warranting further investigation in future studies. While the study cohort primarily comprised minority and low socioeconomic status individuals, the insights gained are valuable for developing targeted educational programs and interventions for older primary care patients. Another limitation was the inability to track whether patients refusing HABC evaluation sought assessment elsewhere.
6. Conclusion
The majority of patients who screened positive for dementia declined diagnostic assessment. Those who completed assessment were less likely to perceive stigma associated with dementia screening and diagnosis and were more receptive to other health screenings. Living alone was the only significant sociodemographic factor differentiating those who refused from those who accepted assessment. Interventions addressing patient perceptions of dementia diagnosis, dispelling misconceptions about stigma, and emphasizing the benefits of early identification have the potential to increase the number of patients seeking necessary dementia diagnostic assessment.
Research in Context
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- Systematic review: Research indicates that patients’ willingness to undergo dementia screening and subsequent diagnostic assessment is linked to their perceptions of their cognitive health and concerns about the negative consequences of a dementia diagnosis, especially given limited treatment or preventive measures.
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- Interpretation: This study reveals that over half (67%) of community-dwelling older adults who screened positive for dementia refused diagnostic assessment. Survey responses from refusers suggest that living alone and agreement with statements reflecting dementia-related stigma were associated with this refusal.
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- Future directions: Interventions aimed at modifying patient perceptions about dementia, diagnosis, and treatment could potentially increase the acceptance of dementia diagnostic assessment.
Acknowledgments
This project was supported by grants from the National Institute on Aging (R01AG029884 and 5R01AG040220) and the National Institutes of Health (KL2TR000146 and KL2TR001106).
Conflict of Interest: The authors declare no conflict of interest.
Footnotes
Supplementary data for this article is available online at http://dx.doi.org/10.1016/j.dadm.2015.01.002.
References
[References from original article would be listed here]
Associated Data
Supplementary Materials
Supplementary Material: mmc1.docx (33.8KB, docx)
