Table 5 Preferred approach and content of patient-provider conversations about dementia risk assessment

 Direct and thoughtful communication

You might have to stretch it out and take a long time…You just can’t say “You are having this problem, end of story.” You know, “We don’t know what to do to help you out, but this is it.” You have a responsibility to get the information out to them. Be kind and loving, have a nice smile on your face…I think most people will accept what you have to say. Unless you get somebody just [saying] “No, no, no, no, no,” and you have a different approach.

Participant 7, Dementia group

I think that [the first wording used] shouldn’t be possible dementia. But maybe [terms] like cognitive functioning evaluation or something like that, cognitive evaluation. Something so that when it’s first presented to you, it isn’t already pushing you in the “you can’t even hear what’s being said because you’re already thinking of dementia.”

Participant 6, MCI group.

 Provider skills and training

[Doctors] need to be able to speak about dementia so that it doesn’t set off all the fire alarms. And so, for doctors to talk about dementia, because most of us are in that age group where we’re all thinking about it, you know, they need training…They need words.

Participant 5, No Diagnosis group 1

 Communication in the context of

I think [risk assessment] should be at the primary care provider level. Because they’re your baseline physician. And they’re supposed to be responsible for your overall health.

Participant 8, No Diagnosis group 2

 an established care relationship

Your primary care physician [should talk to you] because that’s the one, hopefully, that you have a relationship with. You want [someone] who knows who you are. I don’t want psychology, somebody who only speaks medical-ese. I don’t want that. I want someone who knows who I am.

Participant 5, No Diagnosis group 2

 Clear distinction between risk assessment and diagnosis

[In the role-playing exercise] I was the doctor, and I kept trying to say that you may be at risk, because this was not a definitive test. And that we would have to do more follow-up and testing.

Participant 5, No Diagnosis group 1

 Involving family members

I did ask [my partner acting as patient in role-playing] how close her family was. Because…that would impact how personally I would proceed if I were the doctor…I might say, “Well, would you mind if I gave them a call” or…something like that.

Participant 10, No Diagnosis group 1

[What was comforting was] the doctor [other participant acting as doctor in role-playing] explaining to me that I might be developing dementia, and we’re going to make an appointment with my son to come in and we will talk about this.

Participant 9, No Diagnosis group 1

 Information on dementia, treatment, and prognosis

It would be nice to have a human being in front of me talking about how this impacts me, and what can be done, and how things will end up and so forth.

Participant 7, Dementia group

[I will want to know] was there any treatment for it. And given this risk, how fast is it going to proceed?

Participant 5, No Diagnosis group 1

 Concrete support and resources

[My partner acting as a patient in role playing] was real clear that she wanted more specific information…She wanted literature, support groups for herself and possibly for family at a time when they could get there, like weekends or after work, that kind of stuff.

Participant 10, No Diagnosis group 1