Table 4.

Examples of in vivo coding of participant responses.

In Vivo Code	Participant Responses to Interview Questions
Interview Question: “What do you see as benefits to routine screening for Alzheimer’s disease for older adults over age 65?
It gives family a chance	To learn more about Alzheimer’s. Now at early age while we have the chance.
	Prevention screening and prevention is really absolutely critical in terms of almost any health or behavioral health mental health
	I also think that once you test it earlier and find out any health issue it is beneficial to the patient.
	Yes, you know I would like to know …
	I believe that the routine screenings would help figure out who is, uh, in danger at this point. And that would allow people to make plans for the future.
	I’m willing to participate in some new, you know, testings, and then I would I’m sure be benefitting.
	I feel like many of their treating physicians don’t get in to the sort of, like, preventive kind of underlying issues with cognitive decline until people are really, really symptomatic
	Well that would get - be what a cold - in my brain … is good to get tested early for it cause lately you could take a medication
	I think it’s important for people to have that helpful information so they can make any lifestyle changes. Um, to try to improve their memory too
	Because the fact that you’re learning what’s going on earlier that it could be treated.
	It gives family a chance.
Interview Question: In what ways would cognitive screening be beneficial to persons at risk for AD/their families/the community?
Keep everybody at home	Well, if you know what you got then they know how to treat you.
	I don’t know right now, I ain’t got no idea about that.
	It just makes you aware of what you may be dealing with and what resources you may need and support.
	Personally, yes, because I have family members who have, um, dementia or had dementia.
	Yeah, I like for my children to know if I got it.
	I also think it will help the community because everyone doesn’t know about Alzheimer’s. And I think it’s important for them to know.
	Well working with the community, um, is a blessing because if you’re close with the members of your community they are able to look out for you. And help, you know, and care for you.
	I also think that it’d be beneficial for the community to find out early because same as an individual, you know, anything that we can find out early we can, uh, quickly act upon it.
	And I think, um, you know, getting together with some of the community organizations will help
	It’ll also help them [caregiver], let them know what’s the next step that they need to do for them.
	I also think it will help the community because everyone doesn’t know about Alzheimer’s. And I think it’s important for them to know.
	I don’t think you can prevent having the disease, but it is beneficial for you to make the proper arrangements so you can deal with the disease in a better way
	Well, it could help address.um, community outreach, what kind of strategies you could help people, um, to try to get everyone.
	I think that particular population is grateful for any health care that they get. I think more than other communities where you work, I think, they are responsive to any type of screening that you can offer.
	Because the community can plan to better serve those individuals.
	To be able to plan for their future care and make their own choices while they’re able to do so with good intent.
	Because it allows you to plan. It allows you to identify what other lifestyle you to changes even health, financially, emotionally and identify what support system do you need.
	would appreciate it and, um, instead of waiting until the last minute when nothing can be done. You know where you find it in earlier stages. You can work with it a little bit more or slow the process down.
	Just that early diagnosis so that they can get some help.
	A big benefit for the community is to try to keep everybody at home as long as possible.
Interview Question: “What do you see as reasons to not do regular screening for Alzheimer’s disease in your community”?
There’s a cost to do that	At that point you’ve already missed the opportunity to treat them and to start linking them to services.
	They don’t have money. I can’t tell you how many times people come to the emergency room: I’ve been sick for six months.
	Why didn’t you come? Well so if I have breast cancer what difference does it make? I don’t have any money to do anything about it. That attitude of, you know, I don’t need to know because I can’t afford to fix it.
	I don’t think there’s any bad to finding it.
	Probably the same, same reasons that they don’t do screenings for anything. They don’t want to know.
	I would say in this area it’s because there’s no services available
	I don’t see a reason to not do. I’m sure finances will fit in there somehow, who’s going to pay for it, or you know, is insurance going to cover it, or if you, if you diagnose it and recognize that, the next step is going to be huge.
	You know there’s nothing you really can do about any kind of disease that you acquire because of the fact that, as we live, as we grow older these things happen that we can’t do anything about.
	As we heard earlier today in our meeting, the community may not understand. They [community] may not know how to react to persons, gosh, who are struggling, who see them [persons with dementia] in the store, and also in the community, nagging.
	It could be also financial. I personally don’t know if there is a cost to do that uh screening, if the insurance pays for it, so, lack of knowledge.
Interview Question: What do you think may prevent people from seeking routine screening for Alzheimer’s disease in your community?
Access to care	Well, now some people don’t have a clear mind and the community don’t know.
	The community to be educated about what, what’s going on, or what happened and they, they, they are functional people; need to have that great support system.
	As a person who has worked with Alzheimer’s, there is no real negative but there are emotional negatives. Many times family members are very unaccepting of that and they do not treat that person well when they find this out. And I would like to change that personally, but it is true.
	I think access to care can be a big problem. Especially for people who are undocumented if they don’t have routine care. So they might not get that screening. And it’s going to be stressful in the long term on the community for resources and family members. Absolutely. Participant Responses to Interview Questions
Interview Questions: To Lay Members: “Please give me some suggestions for making it easier for older adults to be screened for Alzheimer’s disease” To Professionals: “What could people in your position do to make it easier for older adults to be screened earlier for Alzheimer’s disease?”
The trust issue is everything here	Now in particular in rural areas or areas that don’t have the full spectrum of services it is extremely important to bring services to the community and to be available and, and start developing the trust in relationships so that persons know that they can come
	I think that Alzheimer’s need to have a one to one contact. And you need to read the body language you know, it’s a lot of things
	Uh, well the culture in the Glades community is very close. People need to trust you. People need to know you, for they to be able to open up. It’s like it’s challenging to do a research here in the community.
	This community may surprise you. The issue is trust. If trust can be established it might work.
	The people here; you do need the contact, you need to kind of hold their hands, you know.
	And I think, um, you know, getting together with some of the community organizations
	Sounds like a very nice thing it’s just that … the trust issue is everything here.
Education is really big	I think education is absolutely critical. Um, education and awareness.
	Make sure that people are understanding
	It’s not even about acceptance but it’s like, you know, they understand it, they understand,
	But if someone tells you and helps you to understand and to know that because of this, this is why this is happening, then you know, you, you understand it better. And, and you embrace it I think a bit more.
	It’s best to know what’s, what’s going on with them at that moment. - And do we up-lift them or do we down them.
	It is important to know how the Alzheimer’s works with each and every one and it’s important to know what next step they need to take during Alzheimer’s or knowing about Alzheimer’s.
	Because we based on my basic knowledge about AD, um, it’s very important for me to educate people.
	Without education we’re not going to really make such an impact on people’s community.
	Education on this subject is the best. And that’s really the only way. Um, the other fear will go away with education and that would be the primary purpose that you would have, I would hope.
	Um, lack of knowledge is one of them. Not enough resources in the community. Education is really big.
Identify Support Systems	Set up a relationship with them where as people come in they could be screened. I think that would improve access tremendously
	I think public awareness, uh, is really important. Doing things like health fairs, getting that information out there to people is very important.
	Transportation to doctor’s office or whatever the case may be, even financial support may be needed.
	Think they appreciate whatever can be made available to them in ways that are accessible to them.
	Well I think that having that information available in your practice but also doing community outreach, doing health fairs, setting up information booths outside not just in the community health fairs but like going to local businesses, letting people know that information is available.
	Not only that there’s treatment but also a way to kind of help those type of patients
	First of all more data will be collected and that will allow for the politicians or people in the health field to come up with more decision more help, to help those people.
	Well, the preparation involves financial health-wise, family support and make all kinds of arrangements, necessary arrangements.
	I’ve never seen so many churches in such an you know kind of small geographic area. And I think you know, getting together with some of the community organizations that offer health fairs, and adding that as an additional service, I think would be really beneficial for that community.
	Yeah, having a nurse come here, that would help.
	I don’t know anything but those doctors told us what to do and where to come
	And I’m sure there’s a gap accessing services in the community so that persons can have social interaction and relieve caregiver distresses.
	I think the biggest barrier is how to access it whether it’s by transportation or where to go.
	So, if we had some kind of a program or we had a person to do screening I could help that person get patients to be screened. That wouldn’t be a problem.
	We could, uh, I don’t know, set up meetings in our church for folks or somebody to come out. To, uh, I guess, do a presentation to help people be more aware as to, you know, this disease.
	I think we could do some good presentations, some education. We could do some outreach in terms of our newsletter. There’s certain events that are happening, or any ongoing screening that’s available.
	It allows you to identify what other lifestyle you to changes even health, financially, emotionally and identify what support system do you need.
A sentence being pronounced over their lives	Interview Question: “What fears do you have related to the subject of cognitive screening”?
	Some people are afraid to find out, some people are afraid for other people to find out, you know
	No, I don’t have any fear because I be hoping what they said they working on a medication.
	Personally, yes, because I have family members who have, um, dementia or had dementia. And now those people are now passed. So there’s always, um, a fear that that will happen to your family member or to you. So I think the more information that’s available, personally and for the community, is important.
	They don’t, they just don’t worry about the future, you know
	Being afraid of the answers they might get
	No I have no fears.
	There was a time you know, before the Affordable Care Act, um, was upheld by the Supreme Court, people who might have been denied health insurance coverage because of the identification of certain types of illnesses. And so there was a hesitation,
	I think, a resistance to getting, you know, screened for things like that. I think that barrier is down, um, at least for the time being.
	We’ll see what the political landscape, you know, looks like moving forward but any more that barrier [fear of knowing AD dx] at least has been, I think, addressed because no longer can people be denied health care coverage on the basis of, you know, medical conditions they have. So I think those issues, um, come into play and I think there were people that didn’t necessarily want to go on the radar as, you know, having screened for something like Alzheimer’s.
	I think people generally are concerned about, afraid of and they fear things that they don’t know about or they don’t understand. And that’s why I think that education is so important, you know, to you to make sure that people are understanding and that it’s not, um, it’s not a sentence that’s being pronounced over you know, their lives.