Background
Methods
Survey development
Recruitment
Survey administration
Statistical analysis
Survey response patterns
Evaluating factor structure of total sample
Testing measurement invariance across racial groups
Results
Sample characteristics
Characteristica | |
---|---|
Age (mean, SD) | 64.8 (7.7) |
Gender (n, %) | |
Women | 248 (74%) |
Men | 86 (26%) |
Education (n, %) | |
≥ Bachelor’s degree | 195 (58%) |
< Bachelor’s degree | 139 (42%) |
Race (n, %) | |
Black or African American | 148 (44%) |
White | 186 (56%) |
Recruitment source (n, %) | |
Wisconsin ADRC | 167 (50%) |
WRAP | 167 (50%) |
Family history of dementia (n, %) | |
Positive | 208 (62%) |
Negative | 125 (37%) |
Dementia caregiver (ever) (n, %)b | |
Yes | 228 (68%) |
No | 86 (26%) |
Research attitudes (RAQ-7), (mean, SD; range) | 29.9 (3.5; 20–35) |
Perceived discrimination, (mean, SD; range) | 16.5 (6.4; 7–37) |
Anticipated reactions to learning AD biomarker results
Item | Not at all [1] N (%) | A little [2] N (%) | Somewhat [3] N (%) | Very [4] N (%) | Extremely [5] N (%) | Mean (SD) |
---|---|---|---|---|---|---|
Prompt: I’m going to tell you some reasons why someone might want to learn their brain marker results. Please rate how important each of these are to you, as a reason to learn your brain marker results | ||||||
To know more about your risk of developing Alzheimer’s | 18 (5.4) | 27 (8.2) | 55 (16.6) | 91 (27.5) | 140 (42.3) | 3.93 (1.2) |
To inform lifestyle changes you might make, such as diet or exercise that might help prevent Alzheimer’s | 9 (2.7) | 10 (3.0) | 38 (11.4) | 105 (31.4) | 172 (51.5) | 4.26 (1.0) |
To put your mind at ease if you found out your brain marker results did not indicate a higher risk for developing Alzheimer’s | 15 (4.5) | 11 (3.3) | 41 (12.3) | 115 (34.4) | 152 (45.5) | 4.13 (1.0) |
To be able to participate in clinical trials attempting to lower brain marker results | 13 (3.9) | 16 (4.8) | 68 (20.5) | 126 (38.0) | 109 (32.8) | 3.91 (1.0) |
To arrange your personal affairs, such as insurance, your will, or your finances | 32 (9.6) | 21 (6.3) | 69 (20.7) | 94 (28.1) | 118 (35.3) | 3.73 (1.3) |
To confirm the feeling that you might already be developing symptoms of Alzheimer’s | 28 (8.4) | 24 (7.2) | 61 (18.3) | 105 (31.5) | 115 (34.5) | 3.77 (1.2) |
To prepare your family for your possible illness in the future | 18 (5.4) | 16 (4.8) | 54 (16.2) | 108 (32.3) | 138 (41.3) | 3.99 (1.1) |
A desire to start doing things sooner than you had planned | 24 (7.2) | 21 (6.3) | 65 (19.5) | 121 (36.2) | 103 (30.8) | 3.77 (1.2) |
Prompt: I want you to imagine that you participated in a study and were told that your brain marker results were high. While these results do not necessarily mean you will develop Alzheimer’s, it means you have a higher risk of developing Alzheimer’s. If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s… | ||||||
How upset would you feel about your results? | 25 (7.5) | 50 (15) | 125 (37.5) | 82 (24.6) | 51 (15.3) | 3.25 (1.1) |
How sad would you feel about your results? | 12 (3.6) | 50 (15) | 125 (37.5) | 87 (26.1) | 59 (17.7) | 3.39 (1.1) |
How anxious or nervous would you feel about your results? | 28 (8.4) | 49 (14.7) | 126 (37.8) | 88 (26.4) | 42 (12.6) | 3.20 (1.1) |
How relieved would you feel about your results? | 96 (29.1) | 43 (13.0) | 83 (25.2) | 72 (21.8) | 36 (10.9) | 2.72 (1.4) |
How happy would you feel about your results? | 202 (61.2) | 27 (8.2) | 47 (14.2) | 30 (9.1) | 24 (7.3) | 1.93 (1.3) |
How worried would you be about your risk of developing Alzheimer’s? | 18 (5.4) | 49 (14.7) | 120 (35.9) | 94 (28.1) | 53 (15.9) | 3.34 (1.1) |
How uncertain would you be about what your results mean about your risk of developing Alzheimer’s? | 31 (9.3) | 49 (14.8) | 156 (47.0) | 76 (22.9) | 20 (6.0) | 3.02 (1.0) |
How uncertain would you be about what your results mean for your children or family’s risk of Alzheimer’s? | 31 (9.3) | 34 (10.2) | 105 (31.6) | 108 (32.5) | 54 (16.3) | 3.36 (1.2) |
How frustrated would you feel about there being no definite Alzheimer’s prevention guidelines for you? | 40 (12.0) | 56 (16.8) | 90 (27.0) | 89 (26.7) | 58 (17.4) | 3.21 (1.3) |
How hopeless would you feel about the future? | 89 (26.6) | 73 (21.9) | 112 (33.5) | 39 (11.7) | 21 (6.3) | 2.49 (1.2) |
How concerned would you feel about how your results might affect your insurance status? | 81 (24.3) | 29 (8.7) | 92 (27.7) | 79 (23.8) | 51 (15.4) | 2.97 (1.4) |
How concerned would you feel about the possibility that your doctor might learn the results and treat you differently? | 145 (43.5) | 49 (14.7) | 65 (19.5) | 46 (13.8) | 28 (8.4) | 2.29 (1.4) |
How concerned would you be that if others, such as family, friends, or co-workers, learned the results, they would act differently toward you? | 87 (26.0) | 57 (17.1) | 107 (32.0) | 55 (16.5) | 28 (8.4) | 2.64 (1.3) |
How likely would you be to tell a loved one your results? | 11 (3.3) | 16 (4.8) | 44 (13.2) | 130 (38.9) | 133 (39.8) | 4.07 (1.0) |
How difficult would it be to talk about your results with family members? | 142 (42.6) | 57 (17.1) | 80 (24.0) | 44 (13.2) | 10 (3.0) | 2.17 (1.2) |
How supportive do you feel that your family would be? | 2 (0.6) | 4 (1.2) | 23 (6.9) | 138 (41.6) | 165 (49.7) | 4.39 (0.7) |
How likely is it that you would feel a loss of personal control? | 38 (11.4) | 49 (14.8) | 117 (35.2) | 80 (24.1) | 48 (14.5) | 3.15 (1.2) |
How likely is it that you would have problems enjoying life because of your results? | 104 (31.1) | 77 (23.1) | 96 (28.8) | 38 (11.4) | 18 (5.4) | 2.37 (1.2) |
How likely is it that you would regret getting your results? | 169 (50.8) | 54 (16.2) | 66 (19.8) | 34 (10.2) | 10 (3.0) | 1.98 (1.2) |
How likely is it that you would feel bad about yourself, or that you are a failure or have let yourself or your family down? | 242 (72.9) | 52 (15.7) | 21 (6.3) | 9 (2.7) | 8 (2.4) | 1.46 (0.9) |
How likely is it that you would have thoughts that you would be better off dead or consider hurting yourself in some way? | 272 (82.2) | 30 (9.1) | 17 (5.1) | 5 (1.5) | 7 (2.1) | 1.32 (0.8) |
How likely is it that you would seek mental health services? | 56 (16.9) | 53 (16.0) | 84 (25.3) | 84 (25.3) | 55 (16.6) | 3.09 (1.3) |
How likely is it that you would have more trouble concentrating on things, such as reading the newspaper or watching television? | 124 (37.5) | 66 (19.9) | 96 (29.0) | 30 (9.1) | 15 (4.5) | 2.23 (1.2) |
How likely is it that you would have more trouble remembering things, such as recent conversations or events? | 116 (35.2) | 61 (18.5) | 91 (27.2) | 41 (12.4) | 21 (6.4) | 2.36 (1.3) |
How likely is it that you would be less confident about your ability to carry out daily activities? | 99 (29.6) | 71 (21.3) | 120 (35.9) | 30 (9.0) | 14 (4.2) | 2.37 (1.1) |
How likely is it that you would view the length of time you have to live differently? | 56 (16.8) | 33 (9.9) | 89 (26.7) | 97 (29.1) | 58 (17.4) | 3.20 (1.3) |
How likely would you be to make changes to your diet? | 12 (3.6) | 13 (3.9) | 43 (12.9) | 12 (38.0) | 139 (41.6) | 4.10 (1.0) |
How likely would you be to exercise or do more physical activity? | 15 (4.5) | 19 (5.8) | 36 (10.9) | 130 (39.4) | 130 (39.4) | 4.03 (1.1) |
How likely would you be to make changes to your medications? | 38 (11.6) | 18 (5.5) | 67 (20.4) | 105 (31.9) | 101 (30.7) | 3.65 (1.3) |
How likely would you be to make changes to or start taking vitamins or herbal supplements? | 41 (12.3) | 17 (5.1) | 60 (18.0) | 117 (35.1) | 98 (29.4) | 3.64 (1.3) |
How likely would you be to engage in activities to reduce stress? | 14 (4.2) | 17 (5.1) | 40 (12.0) | 147 (44.0) | 116 (34.7) | 4.00 (1.0) |
How likely would you be to engage in mental or cognitive activities such as crossword puzzles or Sudoku? | 13 (3.9) | 14 (4.2) | 35 (10.5) | 147 (44.0) | 125 (37.4) | 4.07 (1.0) |
How likely would you be to reduce or eliminate alcohol intake? | 34 (11.3) | 13 (4.3) | 49 (16.2) | 102 (33.8) | 104 (34.4) | 3.76 (1.3) |
EFA and CFA for the total sample
Loading | Alpha | |
---|---|---|
Preparatory/planning behavior | .91 | |
To know more about your risk of developing Alzheimer’s | 0.78 | |
To inform lifestyle changes you might make, such as diet or exercise, that might help prevent Alzheimer’s | 0.63 | |
To put your mind at ease if you found out your brain marker results did not indicate a higher risk for developing Alzheimer’s | 0.67 | |
To be able to participate in clinical trials attempting to lower brain marker results | 0.62 | |
To arrange your personal affairs, such as insurance, your will, or your finances | 0.80 | |
To confirm the feeling that you might already be developing symptoms of Alzheimer’s | 0.92 | |
To prepare your family for your possible illness in the future | 0.92 | |
A desire to start doing things sooner than you had planned | 0.82 | |
Psychological distress | .90 | |
How upset would you feel about your results? | 0.90 | |
How sad would you feel about your results? | 0.88 | |
How anxious or nervous would you feel about your results? | 0.82 | |
How worried would you be about your risk of developing Alzheimer’s? | 0.82 | |
How uncertain would you be about what your results mean about your risk of developing Alzheimer’s? | 0.61 | |
How uncertain would you be about what your results mean for your children or family’s risk of Alzheimer’s? | 0.43 | |
How frustrated would you feel about there being no definite Alzheimer’s prevention guidelines for you? | 0.65 | |
How hopeless would you feel about the future? | 0.61 | |
Dementia risk-reducing behavior | .87 | |
How likely would you be to make changes to your diet? | 0.92 | |
How likely would you be to exercise or do more physical activity? | 0.90 | |
How likely would you be to make changes to your medications? | 0.66 | |
How likely would you be to make changes to or start taking vitamins or herbal supplements? | 0.70 | |
How likely would you be to engage in activities to reduce stress? | 0.79 | |
How likely would you be to engage in mental or cognitive activities such as crossword puzzles or Sudoku? | 0.56 | |
Subjective cognitive decline | .86 | |
Have more trouble concentrating on things, such as reading the newspaper or watching television? | 0.73 | |
Have more trouble remembering things, such as recent conversations or events? | 0.95 | |
Be less confident about your ability to carry out daily activities? | 0.85 | |
Stigma | .71 | |
How concerned would you feel about how your results might affect your insurance status? | 0.54 | |
How concerned would you feel about the possibility that your doctor might learn the results and treat you differently? | 0.80 | |
How concerned would you be that if others, such as family, friends, or co-workers, learned the results, they would act differently toward you? | 0.55 | |
Model fit indices | ||
CFI | .91 | |
RMSEA | .06 | |
SRMR | .07 |
Factor: planning | Factor: risk-reduction | Factor: distress | Factor: cognitive symptoms | Factor: stigma | |
---|---|---|---|---|---|
Factor: planning | 0.40 | 0.09 | 0.20 | 0.11 | |
Factor: risk-reduction | 0.40 | 0.19 | 0.13 | 0.10 | |
Factor: distress | 0.09 | 0.19 | 0.37 | 0.35 | |
Factor: cognitive symptoms | 0.20 | 0.13 | 0.37 | 0.29 | |
Factor: stigma | 0.11 | 0.10 | 0.35 | 0.29 |
Total sample (n = 334) | Black or African American (n = 148) | White (n = 184) | |
---|---|---|---|
Behavior change model | |||
Dementia risk-reduction factor | |||
Inform lifestyle changes that might help prevent Alzheimer’sa | 0.34 | 0.21 | 0.43 |
Participate in clinical trials to lower brain marker resultsa | 0.22 | 0.11 | 0.30 |
Changes to diet | 0.72 | 0.62 | 0.80 |
Do more physical activity/exercise | 0.77 | 0.78 | 0.77 |
Changes to medications | 0.63 | 0.60 | 0.62 |
Changes to vitamins or herbal supplements | 0.68 | 0.55 | 0.71 |
Engage in activities to reduce stress | 0.85 | 0.85 | 0.83 |
Engage in mental or cognitive activities | 0.59 | 0.60 | 0.59 |
Planning factorb | |||
Know more about risk of developing Alzheimer’s | 0.71 | 0.75 | 0.68 |
Inform lifestyle changes that might help prevent Alzheimer’sa | 0.51 | 0.64 | 0.47 |
Put mind at ease if you found out your brain marker results did not indicate a higher risk for developing Alzheimer’s | 0.67 | 0.65 | 0.69 |
Participate in clinical trials to lower brain marker resultsa | 0.54 | 0.67 | 0.46 |
Arrange personal affairs, such as insurance, will, or finances | 0.75 | 0.73 | 0.75 |
Confirm feeling already developing symptoms of Alzheimer’s | 0.85 | 0.81 | 0.86 |
To prepare family for possible illness in the future | 0.89 | 0.88 | 0.88 |
Desire to start doing things sooner than had planned | 0.84 | 0.86 | 0.81 |
Model fit3 | |||
CFI | .97 | .98 | .96 |
RMSEA | .05 | .05 | .06 |
SRMR | .04 | .04 | .06 |
Psychological impact model | |||
Distress | |||
Upset | 0.72 | 0.68 | 0.75 |
Sad | 0.83 | 0.82 | 0.84 |
Anxious/nervous | 0.80 | 0.78 | 0.82 |
Worried about your risk of developing Alzheimer’s | 0.81 | 0.83 | 0.80 |
Uncertainty (personal risk of developing Alzheimer’s) | 0.63 | 0.70 | 0.56 |
Uncertainty (children/family risk of developing Alzheimer’s) | 0.54 | 0.60 | 0.54 |
Frustrated about lack of Alzheimer’s prevention guidelines | 0.74 | 0.76 | 0.70 |
Hopeless about the future | 0.74 | 0.74 | 0.74 |
Subjective cognitive decline | |||
Trouble concentrating | 0.77 | 0.72 | 0.82 |
Trouble remembering | 0.88 | 0.87 | 0.88 |
Less confident about ability to carry out daily activities | 0.84 | 0.86 | 0.82 |
Stigma | |||
Concern about how results might affect insurance status | 0.55 | 0.56 | 0.53 |
Concern doctor might learn results and treat you differently | 0.65 | 0.64 | 0.67 |
Concern treated differently by others if learn results (family, friends, co-workers) | 0.80 | 0.85 | 0.73 |
Model fitc | |||
CFI | .97 | .94 | .98 |
RMSEA | .05 | .08 | .04 |
SRMR | .05 | .06 | .05 |
Behavior change | |
---|---|
Prompt: I’m going to tell you some reasons why someone might want to learn their brain marker results. Please rate how important each of these are to you, as a reason to learn your brain marker results | |
Planninga | |
1.To know more about your risk of developing Alzheimer’s. How important would this be to you as a reason to learn your brain marker results? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
2.To inform lifestyle changes you might make, such as diet or exercise, that might help prevent Alzheimer’s. How important would this be to you (as a reason to learn your brain marker results)? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
3.To put your mind at ease if you found out your brain marker results did not indicate a higher risk for developing Alzheimer’s. How important would this be to you? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
4.To be able to participate in clinical trials attempting to lower brain marker results. How important would this be to you? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
5.To arrange your personal affairs, such as insurance, your will, or your finances. How important would this be to you? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
6.To confirm the feeling that you might already be developing symptoms of Alzheimer’s. How important would this be to you? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > EXtremely |
7.To prepare your family for your possible illness in the future. How important would this be to you? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
8.A desire to start doing things sooner than you had planned. How important would this be to you? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
Prompt: I want you to imagine that you participated in a study and were told that your brain marker results were high. While these results do not necessarily mean you will develop Alzheimer’s, it means you have a higher risk of developing Alzheimer’s | |
Risk-reduction | |
9.If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s, how likely would you be to make changes in the following areas specifically to lower your risk of Alzheimer’s? How likely would you be to make changes to your diet? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
10.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How likely would you be to exercise or do more physical activity? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
11.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How likely would you be to make changes to your medications? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
12.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How likely would you be to make changes to or start taking vitamins or herbal supplements? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
13.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How likely would you be to engage in activities to reduce stress? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
14.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How likely would you be to engage in mental or cognitive activities such as crossword puzzles or Sudoku? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
Psychological impact | |
Distress | |
15.If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s how upset would you feel about your results? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
16.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How sad would you feel about your results? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
17.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How anxious or nervous would you feel about your results? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
18.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How worried would you be about your risk of developing Alzheimer’s? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
19.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How uncertain would you be about what your results mean about your risk of developing Alzheimer’s? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
20.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How uncertain would you be about what your results mean for your children or family’s risk of Alzheimer’s? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
21.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How frustrated would you feel about there being no definite Alzheimer’s prevention guidelines for you? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
22.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How hopeless would you feel about the future? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
Stigma | |
23.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How concerned would you feel about how your results might affect your insurance status? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
24.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How concerned would you feel about the possibility that your doctor might learn the results and treat you differently? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
25.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How concerned would you be that if others, such as family, friends, or co-workers, learned the results, they would act differently toward you? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
Subjective cognitive complaints | |
26.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How likely is it that you would have more trouble concentrating on things, such as reading the newspaper or watching television? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
27.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How likely is it that you would have more trouble remembering things, such as recent conversations or events? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
28.(If you learned that your brain marker results were high and you were at higher risk of developing Alzheimer’s) How likely is it that you would be less confident about your ability to carry out daily activities? | < 1 > Not at all < 2 > A little < 3 > Somewhat < 4 > Very < 5 > Extremely |
Measurement invariance testing across racial groups
χ2 test | Model fit | Model comparison | ||||||
---|---|---|---|---|---|---|---|---|
χ2 | df | p value | CFI | RMSEA (90% CI) | SRMR | ∆CFI | ||
Behavior Change Scale | ||||||||
1.Configural | 209.276 | 144 | < 0.001 | 0.967 | 0.059 (0.040, 0.076) | 0.049 | ||
2.Metric | 231.597 | 158 | < 0.001 | 0.963 | 0.060 (0.043, 0.076) | 0.062 | 1 vs 2 | 0.004 |
3.Scalar | 262.033 | 170 | < 0.001 | 0.954 | 0.064 (0.048, 0.079) | 0.067 | 2 vs 3 | 0.009 |
Psychological Impact Scale | ||||||||
1.Configural | 204.775 | 138 | < 0.001 | 0.970 | 0.056 (0.039, 0.072) | 0.052 | ||
2. Metric | 212.912 | 149 | < 0.001 | 0.971 | 0.053 (0.036, 0.068) | 0.057 | 1 vs 2 | -0.001 |
3. Scalar | 248.344 | 160 | < 0.001 | 0.961 | 0.060 (0.045, 0.074) | 0.063 | 2 vs 3 | 0.010 |