Abstract
Alzheimer disease (AD) is a growing public health problem that disproportionately affects racial and ethnic minorities, including African Americans. Given that the perceptions of illness can influence response to treatment options and coping with disease burden, we examined differences between African Americans and whites with regard to their attitudes, beliefs, and knowledge about AD. A total of 301 participants (mean age = 57 y; 80% female; 47% African American) were surveyed by telephone, with overrepresentation of caregivers and first-degree relatives of people with AD (62% of sample). After controlling for potentially confounding covariates, the 2 groups differed in terms of the following: (1) their knowledge about the disease (eg, recognizing that AD is not a part of normal aging); (2) concern about AD (eg, worry about developing the disease); (3) beliefs about putative causes of AD (eg, stress); and 4) beliefs about the effectiveness of various options for reducing risk of and treating AD (eg, physical activity). Findings suggest that AD outreach and education efforts may do well to take into account divergent illness perceptions across racial and ethnic groups. Further research is needed to confirm these findings in more representative samples and to identify factors that explain these racial differences.
Keywords: Alzheimer disease, dementia, knowledge, risk perception, attitudes, race
Alzheimer disease (AD) is an increasingly significant public health issue with more than 2 million older adults estimated to be affected nationwide.1 With the aging of our population, an estimated 10 million US baby boomers are predicted to develop the disease in the coming decades.2–4 Compared with whites, African Americans are more likely to have AD and dementia, although this elevated risk is reduced if factors other than race are taken into account (eg, age, sex, years of education).1,5–7
A number of researchers have documented how knowledge and attitudes about AD contribute to family decision-making about symptoms, diagnosis, treatment, and participation in dementia research.8–14 In recent work that examines racial differences in knowledge and attitudes about AD, Roberts et al15 found that, compared with whites, African Americans reported less factual knowledge, fewer information sources about the disease, and lower levels of perceived risk of AD. In a 2003 survey of a national sample, African Americans were much more likely than whites to report that AD is the term for normal memory loss associated with aging whereas also expressing more optimism about potential future advances in AD research.16
The primary purpose of the present study is to examine racial differences in knowledge and beliefs about AD and its risk factors and treatment options. In contrast to previous work in this area,15–17 this study is based on more in-depth measures of key constructs. In addition, caregivers and first-degree relatives of people with AD made up more than one-half of the study sample. Because family members play such a key role in healthcare decision-making in the case of AD, a better understanding of the factors that either facilitate or inhibit optimal symptom recognition, diagnosis, and treatment of AD will inform educational outreach and information dissemination initiatives.
METHODS
Data Source and Sample
The data used for these analyses come from a cross-sectional study referred to as the Treatment and Illness Perceptions Survey. This project was based on preliminary findings suggesting notable distinctions between African Americans and whites in their beliefs about AD and its treatment options.15,18 The goal of the project was to explore these differences in illness perceptions in greater detail to provide information that might be used to tailor health education programming for diverse audiences.
Participants were recruited primarily from the Boston metropolitan area via community health fairs, advertisements in community newspapers, and physician referrals as well as from the Boston University Alzheimer’s Disease Center and the Harvard Cooperative Program on Aging. An existing partnership with the Morehouse School of Medicine in Atlanta enhanced recruitment of black participants. In total, 301 participants were recruited; 141 (47%) were black and 160 (53%) white.
After potential participants were identified, each received a mailed packet that included a description of the study, a consent form, and a printed questionnaire to aid responses to the telephone survey. Written consent was obtained before administering the survey. After receiving training in telephone survey procedures, a graduate student in public health conducted the interviews. On average, participants completed the telephone survey in 30 minutes.
Measures
Knowledge of AD
Fourteen true-false questions covering a range of topics (Table 2) were included in the survey to assess knowledge of AD (adapted from published AD knowledge tests and first piloted by Connell19 and also administered in Roberts et al15). In addition to focusing on responses at the item level, a total knowledge score was calculated (the sum of the number of correct true-false responses; possible range, 0 to 14).
TABLE 2.
Percentage of Respondents Correctly Answering True-False Knowledge Items About AD—Overall and by Race
| Total Sample (n = 301) | Black (n = 141) | White (n = 160) | χ2, 1 df | P | |
|---|---|---|---|---|---|
| The primary symptom of AD is memory loss (T) | 90.0 | 90.8 | 89.4 | 0.16 | 0.6847 |
| Most people with AD live in nursing homes (F) | 82.1 | 74.5 | 88.8 | 10.38 | 0.0013 |
| The first signs of AD usually occur before age 60 (F) | 63.1 | 56.7 | 68.8 | 4.65 | 0.0311 |
| Men are more likely to develop AD than women (F) | 73.1 | 69.5 | 76.3 | 1.73 | 0.1879 |
| Scientists have discovered a gene that causes most types of AD (F) | 48.5 | 36.2 | 59.4 | 16.16 | <0.0001 |
| Drugs are available to treat the symptoms of AD (T) | 84.4 | 85.1 | 83.8 | 0.10 | 0.7463 |
| Drugs are available to prevent AD (F) | 90.7 | 87.9 | 93.1 | 2.39 | 0.1225 |
| AD is just one of many types of dementia (T) | 92.4 | 87.2 | 96.9 | 9.87 | 0.0017 |
| There is no known cure for AD (T) | 96.0 | 91.5 | 100.0 | 14.18 | 0.0002 |
| AD can be diagnosed by a blood test (F) | 69.8 | 53.9 | 83.8 | 31.66 | <0.0001 |
| The number of people with AD is now higher than ever (T) | 92.0 | 89.4 | 94.4 | 2.57 | 0.1091 |
| Significant loss of memory and mental ability, commonly known as senility, is a normal part of aging (F) | 54.5 | 41.1 | 66.3 | 19.06 | <0.0001 |
| People with AD usually die within a year or 2 after developing the disease (F) | 95.0 | 90.8 | 98.8 | 10.05 | 0.0015 |
| AD is the most common type of chronic cognitive impairment among the aged (T) | 73.4 | 73.1 | 73.8 | 0.02 | 0.8908 |
| Total True-False Score is above the Median Score of 11 | 42.9 | 24.8 | 58.8 | 35.23 | <0.0001 |
AD indicates Alzheimer disease.
Concerns About AD
Participants were asked to indicate their level of agreement (1 = strongly disagree, 2 = somewhat disagree, 3 = neutral, 4 = somewhat agree, and 5 = strongly agree) with several concerns about AD. The items included: (a) I worry about getting AD someday, (b) If I got AD, it would be extremely stressful for my loved ones and me, (c) AD is one of the worst diseases I can think of, and (d) I would like to know if I am going to get AD at some point later in my life. Items were drawn from scales used to assess perceived concern about AD in previously published studies.14,20
Beliefs About AD Risk
Several items shown to be reliable in previous studies of illness perceptions14 were used to assess beliefs about AD risk. Participants were asked to indicate the importance (1 = not important, 2 = somewhat important, 3 = important, 4 = very important, 5 = extremely important) of 9 factors in increasing AD risk: (a) genetics/heredity, (b) old age, (c) exposure to toxins (eg, aluminum), (d) head injury, (e) God’s will, (f) mental illness, (g) stress, (h) drinking too much alcohol, and (i) smoking too much.
Beliefs About the Effectiveness of Treatment in Preventing or Delaying AD
Participants were asked to assess their level of agreement that each of the 7 possible (not proven) treatments would be effective in preventing or delaying AD using a 5-point scale (1 = not effective, 2 = somewhat effective, 3 = moderately effective, 4 = very effective, and 5 = extremely effective). The treatments included: (a) keeping mentally active, (b) keeping emotional stress low, (c) keeping physically active, (d) eating a healthy diet, (e) medications (ie, Aricept, Exelon, Reminyl), (f) vitamins (eg, Vitamin E), and (g) herbal or dietary supplements (eg, Gingko). Several items were drawn from a treatment beliefs scale used in our previously published work.15
Data Analysis
χ2 tests were conducted to examine racial differences in the proportion of participants who: (a) correctly answered each true-false knowledge item, (b) strongly agreed with each concern about AD, (c) rated each risk factor as very or extremely important in increasing AD risk, and (d) believed each treatment option to be very or extremely effective in preventing or delaying AD.
Visual inspection of total knowledge scores revealed a negatively skewed distribution overall, with race-specific plots showing a relatively normal score distribution among black respondents and a negatively skewed distribution among whites. Because of the skewness in the data, knowledge scores were dichotomized at the median and examined as a categorical variable. A χ2 test was then used to examine racial differences in the proportion of respondents obtaining a knowledge score above the median.
To determine if observed associations remained after adjusting for demographic differences, multivariate logistic regression analyses were conducted. In a series of regression models, responses to each knowledge item, knowledge score status (ie, obtained a total knowledge score above the median vs. at or below the median), and level of agreement with each belief statement were regressed on education, finances, marital status, and race. In addition, prior exposure to AD (ie, caregiver of someone with AD, first-degree relative of an individual with AD, and noncaregiver/nonrelative) was included in all models as familiarity with AD may affect responses.
Caregivers were identified by responses to 2 survey items: “Are you currently the main caregiver for someone with AD?” or “Have you ever been the main caregiver for someone with AD?” First-degree relatives included those who were either the child or sibling of someone with AD. If an individual was both a caregiver and a first-degree relative, he/she was categorized as a caregiver (based on the assumption that caregivers would be more familiar with AD than first-degree relatives).
RESULTS
Sample Characteristics
As depicted in Table 1, the average age of participants was 56.7 (SD = 14.5). The majority of the sample was female (79.7%), approximately one-half was black (46.8%), and nearly half of the sample was married (49.2%). Almost two-thirds reported completing a bachelor’s degree or higher (61.5%). Over one-half of the sample (56.5%) reported their typical month-end financial status as having “some money left over.” In terms of exposure to AD, 40.9% were current or ever caregivers to someone with AD, 21.3% were first-degree relatives, and 37.9% were neither caregivers nor first-degree relatives.
TABLE 1.
Sample Characteristics—Overall and by Race
| Total Sample (n = 301) | Black (n = 141) | White (n = 160) | χ2 (df) | P | |
|---|---|---|---|---|---|
| Age in years* | |||||
| Mean (SD) | 56.7 (14.5) | 56.9 (14.7) | 56.6 (14.3) | —† | 0.8736 |
| Sex (%) | |||||
| Male | 20.3 | 18.4 | 21.9 | 0.55 (1) | 0.4594 |
| Female | 79.7 | 81.6 | 78.1 | ||
| Race (%) | |||||
| Black | 46.8 | — | — | — | — |
| White | 53.2 | ||||
| Marital status (%) | |||||
| Married | 49.2 | 36.2 | 60.6 | 20.98 (3) | 0.0001 |
| Single | 24.9 | 28.4 | 21.9 | ||
| Divorced/separated | 18.3 | 23.4 | 13.8 | ||
| Widowed | 7.6 | 12.1 | 3.8 | ||
| Education (%) | |||||
| High school or less | 26.6 | 41.1 | 13.8 | 31.48 (2) | < 0.0001 |
| Some college | 12.0 | 12.8 | 11.3 | ||
| Bachelor’s degree or higher | 61.5 | 46.1 | 75.0 | ||
| Finances (%) | |||||
| End up with some money left over | 56.5 | 49.7 | 62.5 | 5.65 (2) | 0.0594 |
| Just enough to make ends meet | 31.9 | 38.3 | 26.3 | ||
| Not enough money to make ends meet | 11.6 | 12.1 | 11.3 | ||
| Exposure status (%) | |||||
| First-degree relative | 21.3 | 12.8 | 28.8 | 11.49 (2) | 0.0032 |
| Caregiver | 40.9 | 44.7 | 37.5 | ||
| Other | 37.9 | 42.6 | 33.8 |
One data point missing.
t test (t value = 0.16, 298 df).
Several significant differences in demographic characteristics by racial group were observed, including marital status and education. Blacks were much less likely to be married and to have completed a bachelor’s degree than whites. Compared with whites, a lower percentage of blacks were first-degree relatives of someone with AD (12.8% vs. 28.8%) and a higher percentage were current or ever caregivers (44.7% vs. 37.5%).
Knowledge of AD
As depicted in Table 2, overall knowledge of AD was relatively high, with correct responses given by over two-thirds of the sample for 11 of the 14 items. Ninety percent or more of the overall sample correctly answered 6 of the 14 items and were aware that: (a) memory loss is the primary symptom of AD, (b) no drugs are available to prevent AD, (c) AD is just one of many types of dementia, (d) there is no known cure for AD, (e) the number of people with AD is higher than ever, and (e) people with AD usually do not die soon after diagnosis.
For 8 of the 14 items, significant differences in the percentage of correct responses by racial group were observed. In all cases, white respondents were more likely to answer correctly than black respondents. This racial difference in correct responses was particularly pronounced for 3 items. Compared with whites, blacks were significantly more likely to believe that memory loss is part of normal aging, AD can be diagnosed by a blood test, and a gene that causes AD has already been discovered. As shown in Table 2, a significantly higher percentage of whites obtained a knowledge summary score at the median or higher (24.8% vs. 58.8%).
As can be seen in Table 3, the pattern of racial differences remains unchanged when education, finances, marital status, and AD exposure status are controlled. One exception, however, pertains to the observed difference in response to “people with AD usually die within a year or 2 after developing the disease,” which is no longer statistically significant in the controlled analysis.
TABLE 3.
Adjusted Odds Ratios for Correctly Answering True-False Knowledge Items About AD by Race (Referent Group = White)*
| OR | 95% CI | |
|---|---|---|
| The primary symptom of AD is memory loss (T) | 0.88 | 0.37–2.10 |
| Most people with AD live in nursing homes (F) | 0.50 | 0.25–0.99 |
| The first signs of AD usually occur before age 60 (F) | 0.58 | 0.34–0.99 |
| Men are more likely to develop AD than women (F) | 0.58 | 0.33–1.04 |
| Scientists have discovered a gene that causes most types of AD (F) | 0.40 | 0.24–0.68 |
| Drugs are available to treat the symptoms of AD (T) | 1.48 | 0.72–3.06 |
| Drugs are available to prevent AD (F) | 0.54 | 0.22–1.37 |
| AD is just one of many types of dementia (T) | 0.23 | 0.08–0.69 |
| There is no known cure for AD (T)† | — | — |
| AD can be diagnosed by a blood test (F) | 0.25 | 0.13–0.45 |
| The number of people with AD is now higher than ever (T)‡ | 0.52 | 0.21–1.32 |
| Significant loss of memory and mental ability, commonly known as senility, is a normal part of aging (F) | 0.33 | 0.19–0.56 |
| People with AD usually die within a year or two after developing the disease (F) | 0.20 | 0.04–1.06 |
| AD is the most common type of chronic cognitive impairment among the aged (T) | 0.94 | 0.52–1.69 |
| Total True-False Score above the Median Score of 11 (range, 6 to 14) | 0.23 | 0.13–0.41 |
Adjusted for education, AD exposure status, finances, and marital status.
Could not calculate OR due to lack of variation in response among those of whites.
Adjusted for education and AD exposure status only due to lack of model convergence when finances and marital status included.
AD indicates Alzheimer disease.
Concerns About AD
Although less than one-fifth of the overall sample (17.9%) reported that they worry about getting AD someday, over two-thirds (69.8%) felt that AD would be extremely stressful for them and their families if they were diagnosed with the disease. Almost one-half of the sample (46.8%) reported that AD is one of the worst diseases. About one-third of survey respondents (37.2%) would like to know if they would get AD later in life.
As depicted in Table 4, racial differences are notable in these responses, with blacks less likely to worry about getting AD someday (12.1% vs. 23.1%) and to view getting AD as stressful for them and their loved ones (63.1% vs. 75.6%). Blacks were also much less likely to view AD as one of the worst diseases they could be diagnosed with (39.0% vs. 53.8%). Although a higher percentage of blacks reported wanting to know if they would get AD later in life than whites, this difference was not significant. Although the general patterns of results remained the same, none of these racial differences in responses were statistically significant after adjusting for other demographic differences (Table 5).
TABLE 4.
Percentage of Respondents “Strongly” Agreeing With Each Concern About AD–Overall and by Race
| Total Sample (n = 301) | Black (n = 141) | White (n = 160) | χ2 (df) | P | |
|---|---|---|---|---|---|
| I worry about getting AD someday | 17.9 | 12.1 | 23.1 | 6.24 | 0.0125 |
| If I got AD, it would be extremely stressful for my loved ones and me | 69.8 | 63.1 | 75.6 | 5.56 | 0.0184 |
| AD is one of the worst diseases I can think of | 46.8 | 39.0 | 53.8 | 6.54 | 0.0105 |
| I would like to know if I am going to get AD at some point later in my life | 37.2 | 40.4 | 34.4 | 1.17 | 0.2785 |
AD indicates Alzheimer disease.
TABLE 5.
Adjusted Odds Ratios for “Strongly” Agreeing With Each Concern About AD by Race (Referent Group = White)*
| OR | 95% CI | |
|---|---|---|
| I worry about getting AD someday | 0.57 | 0.28–1.16 |
| If I got AD, it would be extremely stressful for my loved ones and me | 0.58 | 0.33–1.02 |
| AD is one of the worst diseases I can think of | 0.65 | 0.38–1.11 |
| I would like to know if I am going to get AD at some point later in my life | 1.15 | 0.68–1.94 |
Adjusted for education, AD exposure status, finances, and marital status.
AD indicates Alzheimer disease; CI, confidence interval; OR, odds ratio.
Beliefs About AD Risk
In terms of beliefs about AD risk, the sample was generally aware that genetics/heredity and old age play a role (endorsed by 75.4% and 51.5% of the overall sample, respectively; Table 6). Relatively few respondents reported that drinking alcohol (25.3%) and smoking (20.3%) increased risk of AD. Racial differences were notable for 8 of the 9 items, with a significantly higher percentage of blacks reporting that stress (60.3% vs. 28.8%), exposure to toxins (48.9% vs. 24.4%), mental illness (63.8% vs. 25.0%), God’s will (54.6% vs. 13.8%), drinking too much alcohol (37.6% vs. 14.4%), smoking too much (31.9% vs. 10.0%), head injury (53.2% vs. 33.1%), and old age (58.2% vs. 45.6%) increase a person’s risk of AD.
TABLE 6.
Percentage of Respondents Believing Each Factor to be “Very” or “Extremely” Important in Increasing AD Risk—Overall and by Race
| Total Sample (n = 301) | Black (n = 141) | White (n = 160) | χ2 (df) | P | |
|---|---|---|---|---|---|
| Genetics/heredity | 75.4 | 70.9 | 79.4 | 2.89 | 0.0892 |
| Old age | 51.5 | 58.2 | 45.6 | 4.71 | 0.0300 |
| Exposure to toxins (aluminum) | 35.9 | 48.9 | 24.4 | 19.65 | <0.0001 |
| Head injure | 42.5 | 53.2 | 33.1 | 12.35 | 0.0004 |
| God’s will | 32.9 | 54.6 | 13.8 | 56.69 | <0.0001 |
| Mental illness | 43.2 | 63.8 | 25.0 | 46.06 | <0.0001 |
| Stress | 43.5 | 60.3 | 28.8 | 30.32 | <0.0001 |
| Drinking too much alcohol | 25.3 | 37.6 | 14.4 | 21.40 | <0.0001 |
| Smoking too much | 20.3 | 31.9 | 10.0 | 22.28 | <0.0001 |
AD indicates Alzheimer disease.
As displayed in Table 7, when education, financial status, marital status, and AD exposure status are controlled, racial differences remained significant with the exception that the difference in response to “old age” as important in increasing AD risk was no longer significant. Compared with whites, blacks had at least 2 times the odds of believing that 7 factors (ie, exposure to toxins, head injury, God’s will, mental illness, stress, drinking too much alcohol, smoking too much) increase the risk of AD.
TABLE 7.
Adjusted Odds Ratios for Believing Each Factor to be “Very” or “Extremely” Important in Increasing AD Risk by Race (Referent Group = White)*
| OR | 95% CI | |
|---|---|---|
| Genetics/heredity | 0.69 | 0.38–1.25 |
| Old age | 1.66 | 0.99–2.78 |
| Exposure to toxins (aluminum) | 2.72 | 1.57–4.71 |
| Head injury | 2.03 | 1.21–3.42 |
| God’s will | 7.44 | 3.97–13.92 |
| Mental illness | 5.70 | 3.23–10.07 |
| Stress | 3.58 | 2.09–6.14 |
| Drinking too much alcohol | 3.09 | 1.66–5.75 |
| Smoking too much | 3.70 | 1.84–7.42 |
Adjusted for education, AD exposure status, finances, and marital status.
AD indicates Alzheimer disease; CI, confidence interval; OR, odds ratio.
Beliefs About the Effectiveness of Treatment in Preventing or Delaying AD
Approximately between one-third and one-half of the overall sample endorsed the effectiveness of several health behaviors in preventing or delaying AD, including keeping mentally active, keeping emotional stress low, keeping physically active, and eating a healthy diet (reported by 58.1%, 44.9%, 42.9%, and 35.9%, respectively; Table 8). Smaller percentages believed medications, vitamins, and supplements to be effective (endorsed by 14%, 13%, and 10.3%, respectively). Racial differences were significant for several of the health behaviors. A significantly higher percentage of black respondents endorsed keeping mentally active (65.3% vs. 51.9%), keeping emotional stress low (57.5% vs. 33.8), keeping physically active (53.2% vs. 33.8%), and eating a healthy diet (46.8% vs. 26.3) as effective in preventing or delaying AD. In addition, blacks were more likely than whites to endorse the benefits of herbal or dietary supplements (14.2% vs. 6.9%). No significant racial differences were evident in perceptions about medications and vitamins.
TABLE 8.
Percentage of Respondents Believing Each Treatment to be “Very” or “Extremely” Effective in Preventing or Delaying AD—Overall and by Race
| Total Sample (n = 301) | Black (n = 141) | White (n = 160) | χ2, 1 df | P | |
|---|---|---|---|---|---|
| Keeping mentally active | 58.1 | 65.3 | 51.9 | 5.51 | 0.0189 |
| Keeping emotional stress low | 44.9 | 57.5 | 33.8 | 17.02 | <0.0001 |
| Keeping physically active | 42.9 | 53.2 | 33.8 | 11.57 | 0.0007 |
| Eating a healthy diet | 35.9 | 46.8 | 26.3 | 13.77 | 0.0002 |
| Medications (Aricept, Exelon, Reminyl) | 14.0 | 17.7 | 10.6 | 3.15 | 0.0758 |
| Vitamins (Vitamin E) | 13.0 | 12.8 | 13.1 | 0.01 | 0.9263 |
| Herbal or dietary supplements (gingko) | 10.3 | 14.2 | 6.9 | 4.33 | 0.0373 |
AD indicates Alzheimer disease.
After control for other demographic factors, this pattern of differences remained virtually unchanged (Table 9). The odds of believing that keeping emotional stress low, keeping physically active, eating a healthy diet, and taking supplements were effective in preventing or delaying AD were over 2 times greater for blacks than whites (P<0.05 in all cases). In contrast with the unadjusted analysis, for which no significant difference was evident at P<0.05, the odds of believing medications to be effective in preventing or delaying AD were also significantly greater for blacks than whites after controlling for demographic differences (odds ratio, 2.14; 95% confidence interval, 1.01–4.52).
TABLE 9.
Adjusted Odds Ratios for Believing Each Treatment to be “Very” or “Extremely” Effective in Preventing or Delaying AD by Race (Referent Group = White)*
| OR | 95% CI | |
|---|---|---|
| Keeping mentally active | 1.91 | 1.12–3.25 |
| Keeping emotional stress low | 2.54 | 1.48–4.33 |
| Keeping physically active | 2.34 | 1.38–3.96 |
| Eating a healthy diet | 2.20 | 1.27–3.80 |
| Medications (Aricept, Exelon, Reminyl) | 2.14 | 1.01–4.52 |
| Vitamins (Vitamin E) | 1.11 | 0.53–2.36 |
| Herbal or dietary supplements (gingko) | 2.53 | 1.07–5.98 |
Adjusted for education, AD exposure status, finances, and marital status.
AD indicates Alzheimer disease; CI, confidence interval; OR, odds ratio.
DISCUSSION
This study builds on recent published work by examining black/white differences in knowledge and beliefs about AD and about AD risk and treatment. Overall, results indicate that although knowledge of AD is relatively high, so too is concern about the disease. In some cases, racial differences in patterns of response were striking and remained significant when controlling for demographic variables (ie, education, finances, marital status).
To the extent that significant memory loss is thought to be a part of normal aging, people experiencing symptoms of dementia may not seek medical attention nor receive the benefits of available treatments (some of which are only or most effective early in the disease process). Results of the present study indicate that over half of the sample, and significantly more black than white respondents, believe that significant memory loss is an expected part of aging. These results, both overall and in terms of the black-white difference, is consistent with previous research15,16,21,22 and underscores the importance of continued educational efforts to help the general public distinguish between normal aging and dementia. This recommendation, though, assumes that a number of benefits would be realized by families who seek diagnosis and treatment of AD.
Compared with whites, blacks were also much more likely to believe that AD can be diagnosed by a blood test and that scientists have discovered a gene that causes most types of AD. Although it is difficult to interpret these specific results, black respondents may be more optimistic about the current and future state of AD diagnosis, treatment, and research than whites. Racial differences in overall optimism about the future of AD research was also reported in a recent study16 in which blacks were significantly more likely than whites to believe that scientists are on the brink of advancing our understanding of AD and that a cure will be found for AD in their lifetime. Although such optimism may be helpful on some level, continued efforts to disseminate accurate and updated information about AD is critical to address misconceptions and to anchor expectations for future advances in research and treatment.
Although few respondents reported that they worry about the possibility of getting AD someday, the majority thought it would be extremely stressful if they did. In fact, almost one-half of the sample view AD as one of the worst diseases they could think of, a finding similar to one reported in a national survey in which AD was rated second only to cancer as the most feared disease.23 The racial difference in response (ie, whites expressing more concern about AD and more likely to view AD as one of the worst diseases) was not significant when demographic variables and AD exposure status were taken into account. It may be that concerns about AD are elevated with direct family experience with the disease; blacks in the sample were less likely to be married or first-degree relatives than whites.
Compared with whites, black respondents were much more likely to believe that a wide array of factors (including age, exposure to toxins, head injury, mental illness, stress, and drinking and smoking too much) increased risk of AD. Similarly, black respondents were twice as likely as whites to report that keeping mentally and physically active, lowering stress, eating a healthy diet, and taking herbal or dietary supplements were effective in preventing or delaying AD. These results are consistent with those reported in a recent study,16 in which blacks were much more likely to report diet and lifestyle changes to reduce risk of AD when compared with whites. Although it is difficult to interpret these findings, it may suggest that continued efforts to increase awareness of AD risk reduction, such as the Alzheimer’s Association “Maintain Your Brain” campaign, may be well received, particularly by the African American community.
Another striking racial difference in perceptions about AD risk was the much higher likelihood for black respondents to endorse “God’s will” as an important factor in increasing AD risk compared with whites. This difference might reflect the high value placed on religion and spirituality in the African American community and how such beliefs might influence the meaning of the illness. Although speculative, it may be that the higher levels of optimism, lower levels of concern, willingness to view AD as a normal or expected part of aging, and stronger endorsement of “God’s will” as a factor in who gets the disease may reflect a degree of acceptance rather than a lack of knowledge and awareness. Additional research is needed to further explore the unique ways in which African Americans conceptualize and respond to AD in a family member and the extent to which this response is related to access to supportive networks, experience adapting to adversity, and reliance on prayer and religion as a coping mechanism.15
Several study limitations should be noted. First, results are based on a relatively small, nonrandom, largely female sample recruited from 2 metropolitan areas primarily via community outreach and referral from university-affiliated research initiatives. In addition, the sample was more highly educated than the US average and two-thirds of participants had direct experience with AD (as caregivers, first-degree relatives, or both), both of which likely increase level of knowledge about the disease. Furthermore, multiple statistical tests were conducted without adjustment of P values for multiple comparisons. For all these reasons, findings should be viewed as preliminary in nature, with replication needed among larger, more representative samples before definitive conclusions can be drawn about racial differences in knowledge and beliefs about AD.
Another caveat in interpreting these results is that there is no universal agreement even within the AD research community about the “right” answer to some of the knowledge items included in this study and about the efficacy of behavioral strategies to reduce AD risk (eg, keeping mentally active, eating a healthy diet). Finally, it should be acknowledged that simple racial comparisons were used as the primary focus of the analyses. As eloquently described in Dilworth-Anderson and Gibson,24 future research is needed to more fully examine how social and cultural values and norms define and give meaning to AD and to decisions about risk reduction and prevention.
CONCLUSIONS AND SUMMARY
Not too long ago, the prevailing view about AD was that nothing can be done in terms of risk reduction and treatment. In addition, the stigma and fear associated with the disease prompted denial and silence, with families facing AD on their own. Much progress has occurred in recent years, as scientists have learned more about the prevention of dementia (including work on brain health, physical activity, and diet) and families have moved toward active management of the disease (involving use of available treatment options, integration of coexisting conditions into the treatment plan, and use of a wide array of community-based support services).2 With the aging of our population and the sobering projections of the number of families that will face AD in the decades ahead (combined with the promise of risk reduction and benefits of early treatment), a renewed sense of commitment to AD outreach and education that goes beyond increasing knowledge and awareness seems warranted. To the extent that race impacts response to AD outreach and education, further research that adopts a more nuanced approach to examining differences is also in order.
ACKNOWLEDGMENTS
The authors thank Dr Yvonne G. Hipps and colleagues at Morehouse University for their assistance with the recruitment phase of the study.
Supported by grants from the National Alzheimer’s Association (NIRG-02-3712) and the National Institute on Aging to the Michigan Alzheimer’s Disease Research Center (P50-AG08671) and to the Boston University Alzheimer’s Disease Center (P50-AG13846).
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