Table 4 Questions and concerns about a potential dementia risk-assessment tool

Risk calculation

I have an analytical mind, so the first thing I will want to say is, “Well, how did he determine this risk?” You know, what tests did he use so I know from what certainty there is.

Participant 5, No Diagnosis group 1

Proper evaluation and use of a risk-assessment tool

[The tool] sounds intriguing… I assume there would be some ongoing evaluation of its efficacy. We’re not blinded by, oh, this is a new computer thing. But I appreciate it’s the result of human thought, labor and it deserves to be fairly evaluated as to whether it’s efficacious or not.

Participant 3, MCI group

[Primary care doctors] have got to be educated strongly in the tool and how it works and how to use it.

Participant 8, No Diagnosis group 2

Privacy of risk data and potential labeling

If they put a risk label on you, how is that going to affect your care, and how many other unscrupulous people would get ahold of this and try to do something with this data? Because, man, if they think you’re demented or even at risk, they’re going to go after you and target you as a victim somewhere.

Participant 5, No Diagnosis group 1

I would want [risk data] in my records. But other people, you know, might have that option of whether or not they wanted it to be. Because there’s some families with people with dementia, they’re really secretive. They keep it closed.

Participant 11, No Diagnosis group 1

“False-positive” results

I think [the tool] would [be] good as long as they worked it out so there wouldn’t be false positives…Because that could just tear your life up too if you’re false diagnosis or indication that you may and you don’t.

Participant 4, No Diagnosis group 1