Demographics of the two samples are presented in . Caregivers were younger, more educated, and more likely to be female than the non-caregiver respondents. They were also more likely to be married and less likely to live alone. Caregiver respondents were, by definition, more likely to have known someone with AD. Interestingly, they also were more likely to believe they are at a higher risk of developing AD than others in their age group.
Demographic characteristic and beliefs of the two cohorts
The caregiver sample had a significantly lower mean acceptance score for screening than the non-caregivers (53.9 vs. 60.6; P < 0.05). This difference appears to be driven primarily by non-caregiver respondents agreeing that they would like to be tested for AD with a blood sample (66.4% vs. 44.4%; P < 0.05) and that they would like to have an MD examine them for AD (76% vs. 55.6%; P < 0.05). Less than half of both samples agreed with wanting to be tested with any type of brain imaging (42% and 45.6%). These significant differences remained after adjusting for age, race, gender, and education ().
Acceptance and perceptions of benefits and harms of dementia screening among the two cohorts.
Both caregivers and non-caregivers agreed with the benefits of the dementia screening, with caregivers having a significantly higher mean score (72.8 vs. 69.0; P < 0.05). Caregivers were more likely to cite having more time to talk with their family about health care and finances (93.8% vs. 82.4%; P < 0.05). Caregivers were also more likely to agree about being more motivated to have a healthier lifestyle (80.3% vs. 64.8%; P < 0.05) and to sign an advance directive or a living will (91.4% vs. 80.8%; P < 0.05). The differences in the overall perceived benefits and other individual benefit items were not significant after adjusting for age, gender, race, and education ().
Both caregivers and non-caregivers generally disagreed that they perceived stigma would be a consequence of dementia screening. The stigma mean score was significantly lower for the caregiver sample (32.9 vs. 37.5; P < 0.05), even though both scores indicated that neither sample thought stigma to be a major issue. There were no significant item differences in this domain. The most common concerns (> 25% of participants) for both groups were that they would no longer be taken seriously and that their employer or health insurance company would find out that they have AD. Very few participants (<10%) had concerns that they might receive inadequate care from health care providers, would give up on life, or would not want their family to know. After adjusting for all demographics, the difference in overall perceived stigma was no longer significant ().
Perceived Negative Impact on Independence
The independence score was significantly lower for the caregiver sample (47.6 vs. 54.0; P < 0.05), although the scores indicated that both samples were neutral with respect to loss of independence. Although the groups viewed screening to marginally impact independence overall, both groups identified the greatest perceived impact on independence to be fear of losing one's driver's license or other privileges (>75%). After adjusting for demographics, the difference in perceived independence was not significant and concern about the obtaining health insurance was less in the non-caregiver cohort.
Caregivers had a significantly higher mean suffering score (61.6 vs. 55.9; P < 0.05). Caregivers had higher agreement scores for all four questions of the scale, with the largest differences for financial suffering (59.3% vs. 44.8%; P < 0.05) and being depressed (64.2% vs. 43.2%; P < 0.05). The difference for overall perceived suffering remained significant after adjusting for demographics. Additionally, African-Americans had lower perceived suffering scores than whites. Only financial suffering item remained significant after adjusting for demographics.
Regression models for the five domains are presented in . After adjusting for age, gender, race, and education, only two domains remained significantly associated with being a caregiver. Those with caregiving experience had significantly lower screening acceptance scores and significantly higher perceived suffering scores. Experience as a caregiver was not significantly associated with the other three domains (benefits, stigma, and independence) after adjusting for age, race, gender, and education. The loss of significance from the bivariate association seems to be from the difference in age and education between the two cohorts as well as the association of age and education with these three scales ().
Association between attitudes of dementia screening and having dementia caregiving experience adjusting for, age, gender, education, and race.