Table 2.
Themes With Illustrative Quotes
| Major themes | Subthemes | Illustrative quotes |
|---|---|---|
| (1) Paradox within AS settings | (1a) Driving cessation as a “hot topic” | “And, it’s a hot topic for us, because people are very passionate and frustrated when it happens to someone they know, or to themselves.” (ASP15) “It’s a hot topic, driving. People are very worried about their driver’s licence. (It’s) very important.” (ASP14) “Our first challenge is the conversation about driving cessation. (It) doesn’t usually happen until there’s a problem, until there’s a report to the Ministry of Transportation.” (ASP14) |
| (1b) Avoidance at the individual level | “We have our info line that would be more helping through it step-by-step. But it’s not proactive, it’s reactive. We often don’t get calls until there’s a real crisis situation. Somebody is driving even though they got a letter in the mail saying they shouldn’t drive and what do we do?” (ASP03) “It’s an avoidance thing. So, I’m curious to see if we get, kind of an average number of people out to that workshop (on driving and dementia), or if it will be really small cause people don’t want to go there.” (ASP14) “Often times driving is an issue, but … there may be other bigger issues that they’re dealing with. It’s not always at the forefront of the challenges.” (ASP07) | |
| (1c) Avoidance at the programmatic level | “If the conversation around retiring from driving was earlier, rather than after they’ve lost their licence, at a memory clinic, or at their doctor’s office, then, it would probably be less alarming. It’s still going to be hard and they’re still going to have to grieve that loss and be challenged with all of the transitions that come. ... It’s not going to prevent them from living fully, if they know what to do, if they know what their options are. So, it’s that front end informing people what it could be like, so they’re not so fearful of when it happens.” (ASP15) | |
| (1d) Importance of early conversations | “You try to use reasoning and it doesn’t work, as it would with somebody who had good insight. ... And, people would still have the emotional turmoil of not being able to drive, but, if they could understand why. They have medical challenges that make it unsafe for them to drive and why that is such a big concern. It’s still difficult, but it’s easier to try and ease them into, ‘Okay, well what else can we do?’ But, if their brain’s not able to give that information, then, it can sometimes end up being a real battle with families, because families are trying to encourage somebody not to drive and they just won’t hear it. Sometimes, it ends up being … well, you’ve had a couple of accidents.” (ASP13) | |
| (2) Lack of awareness and understanding | “It’s a really difficult topic to bring up for people living with dementia and for caregivers, as well. For people with dementia it’s really difficult to consider giving up driving and from what I’ve heard a lot of people don’t realize that they will eventually have to give up driving.” (ASP02) “Frequently, families don’t think about driver cessation if they are observing memory loss unless it’s really affecting activities to daily living. By then it could be too late to be thinking about driving.” (ASP05) “A lot of people I have spoken with think that being a co-pilot is okay. ‘They’re driving fine as long as I’m with them and I tell them where to go’. So, even having those conversations earlier rather than later on, I think would be [helpful]. ...” (ASP06) | |
| (3) System-level issues | (3a) Inconsistencies with primary care physicians’ approaches | “There seems to be a lack of consistency, which is really frustrating for people. To one extreme where the doctor just takes it away, right away. No driving assessment, no options given, to the extreme where it’s not even talked about. And, the family get frustrated because they want the doctor to address that issue.” (ASP08) “Another key challenge is inconsistency among family doctors on addressing driving. Some family physicians report to the Ministry right away. Other family physicians seem not to be concerned about their responsibility to report at all, which when you get people together … like in some of our support groups, people come together and share their stories. And, it becomes pretty apparent that there isn’t consistency. And, so, then there gets to be a feeling of unfairness.” (ASP14) |
| (3b) Confusion about reporting and assessment processes | “Just not knowing what the process is to have driving assessed. Whose responsibility is it? Is it doctors? Is it the family members? Who do they go to, to talk to about that?” (ASP08) | |
| (3c) Lack of accessible driving assessments | “And, so, we’ve had people literally get upset when we talk about this, because they don’t believe that they were fairly treated. And, that they’re very well capable of driving, even now, when you know that they’re not, right. But, that’s where the drivers really get that sense that I’ve not been fairly and duly assessed.” (ASP11) “The Ministry says, ‘Okay, well there might be a problem. If you want to keep driving, you need to demonstrate your ability to drive safely.’ So, then the person has to go to assessment centers approved by the Ministry. They cost between $500 and $700 out of pocket, by the driver. So, for people with low income that’s a barrier … [and] is the end of driving. The other thing is that we don’t have a [Ministry-approved] assessment center in [town in rural area]. So, people have to go out of their community to take a test, which adds to the feeling, ‘That it’s not fair.’” (ASP14) “When people do get reported, I think a lot of people would like to do a driving assessment but for whatever reason they’re like, ‘No I’m not paying that much.’ Some people can’t afford it, some people can but they’re like, ‘I’m not paying that money and not risking getting it back.’ So, I think it’s just lack of knowledge of what’s out there and helping people guide them through that process.” (ASP04) | |
| (3d) Lack of alternative transportation | “We have very little, if any, alternative driving solutions in rural areas. There isn’t a taxi that goes out 45 minutes out of town, or an hour out of town, or two hours. And, if there isn’t a family member living close by, who can take time off work, it just becomes really difficult to get around. So, they end up driving a lot longer than, I think, what is safe. But, they just feel like they do not have a choice … they just keep on driving.” (ASP08) “There’s the reality piece of, ‘I don’t drive. My husband is the one who drives. We’re in a rural community. I’m completely isolated if he’s not driving. That’s why I do always drive with him’. … It’s one thing if my neighbour, two doors down from me can drive versus my closest neighbour who is two kilometers away.” (ASP12) | |
| (4) Bringing driving cessation to the front burner | (4a) Easy to access and flexible | “Some people don’t want to talk to people. They’re not ready and it’s a hard topic. So, maybe just having that readily available online for the public so that they can look at it at their own leisure and get some ideas that way because they are doing their own research.” (ASP06) |
| (4b) To guide through emotional and practical transitions | “And offer emotional support and … how does one plan their life around it? What are the options? How does one plan around it? So, I think a potential resource where people may, uh, have … may have a little bit of a guideline, can go quite a long way.” (ASP10) “And, it would be important that you have a role transition from the perspective of the person with dementia. So, like, ‘What does it feel like to be a passenger in the car for the first time, when you used to always do the driving when you’re with your wife?’ ‘What does it feel like to have to rely on other people for transportation?’” (ASP14) “I just talked to a gentleman, he’s very young, 63, and he’s not collecting pension yet. And yet he’s had to give up his driver’s licence, and was still employed full-time. He had to give up his career. And, you know, he just had tears in his eyes. He was being so brave in saying that he wanted to do the responsible thing. He wanted to not put anyone at risk. But, he just had such a loss of independence. And, so, how do … you know, how to support people in that respect, I think, is one of the key issues for sure.” (ASP08) | |
| (4c) To start the conversation early | “We serve a growing number of people with mild cognitive impairment. So, there is this opportunity with those folks to have these proactive driving conversations. They might not go on to develop dementia and so they might not need to retire from driving … but they’re at higher risk and they might. As we serve those people more and more, there’s this opportunity to have proactive driving conversations.” (ASP12) “Having those conversations as a community-wide thing, as opposed to dementia-specific thing … and I think that having conversations about driver cessation with the population at large is good … it’s that whole thing about causing older adults themselves to think about, ‘Is it safe for me to keep on driving, or should I be looking at other ways of doing this?’ It’s important to have the adult children of people thinking about it long before the problem is totally there, with the public education issue about public safety, not just a dementia issue.” (ASP05) |
Note: AS = Alzheimer Society.