African American participation in Alzheimer's disease (AD) research studies has been historically low. To determine whether older African Americans and Caucasians had different knowledge or attitudes related to AD, we administered the Alzheimer's Disease Knowledge Scale (ADKS) to 67 older African Americans and 140 older caucasians in the greater Atlanta area as well as questions targeting locus of control over general health and AD risks. Older African Americans scored slightly lower on ADKS than older caucasians, with race only accounting for 1.57 (95% confidence interval [CI] 0.57-2.61, P <.001) points of difference in a multivariate model. Attitudes toward AD were also similar between the 2 groups but 1 (35.7%) in 3 adults reported control over general health but not AD risks. In addition to enhancing education content in outreach efforts, there is an urgent need to address the perception that future AD risks are beyond one's own internal control.

Cerebrospinal fluid (CSF) biomarkers for Alzheimer's disease and related disorders can provide early and accurate prediction of underlying neuropathology even when the clinical symptoms are mild, but lumbar punctures (LP) to obtain CSF can be perceived as frightening and invasive. We previously demonstrated that this negative perception of the LP is strongly associated with a negative LP experience in terms of discomfort and complications, but it is not known what factors can lead to a negative perception of the LP. It has also been proposed that LP is less well-perceived by adults in the U.S. compared to Europe and elsewhere, although there is a paucity of primary data to support this. To address these knowledge gaps, we conducted a survey of 237 younger and older adults in the Atlanta area including a significant number born outside of the U.S. (n = 82, 34%) to determine demographic, medical, and experiential factors associated with the perception of LP as well as the willingness to undergo LP for medical or research purposes. Our results show that one in four respondents in this cohort with limited first-hand LP experience viewed the LP as a frightening invasive procedure, but the majority (89%) were willing to undergo LP for medical reasons. General awareness of the LP was associated with both standard and negative views of the LP, but perception did not influence willingness to undergo the procedure. Multi-variate models showed that higher annual household income, not place of birth or past experience, was associated with greater willingness to undergo LPs. We conclude that Americans (born in the U.S. or abroad) are not resistant to LPs if there is useful information to improve their health, although there is limited enthusiasm to undergo LPs solely for research purposes. At the same time, we failed to find modifiable factors to improve the perception of LP among those who already perceive it as frightening and invasive. Future recruitment effort should target adults with no preconceived notion of the LP with emphasis on data related to safety and tolerability.