Table 2.

Themes, definitions and example statements.

Themes and definitions
Losses and burdens
This theme describes the grief and loss and feelings of burden experienced by both persons with YOD and care partners, as a consequence or potential consequence of no longer driving. Participants’ discussions focused on the impact of no longer driving on an individual’s independence, freedom, roles, identity and social connectedness. Care partners described their own losses related to loss of their own valued activities, roles, independence and intimate relationships, along with feelings of strain with taking on a partner’s transport and social support needs.	… I sat down and I told [partner], I went, well, that’s it, no licence so I might as well just curl up and die somewhere (ID RD04). Taking a driver’s licence off of someone is taking their identity off them (CP012). …now he is 100 percent reliant on having somebody else take him … even if it’s—it’s just, ‘Look, I just need to go and get a spray can of paint’. you know, so, ‘Oh, right, okay, well hang on a minute while I finish a load of washing’ (CP010). I took you to the morning melodies at church, I took you to the city to go to lunch with…, and then I took you to the doctor and then I took you back to the church for a trivia night and a casserole night, so that was four activities that I was driving you and then waiting for you to finish or whatever. It gets a bit much sometimes (CP012). I find it difficult to get away on my own, simply because [RD] has got nothing else to do… I feel like I’ve lost my independence too (CP010).
‘Basically, everyone I know is at work’; the unique challenges of YOD
This theme highlights the unique experiences of people with YOD who were occupationally and socially active prior to diagnosis and driving cessation and wanting to continue to retain their mobility post driving cessation. The inconvenience of scheduling and planning and the lack of spontaneity that is at odds with the lifestyle of peers and personal expectations had a strong impact. This theme also reflects the stigma and shame experienced by those with YOD, in relation to licence removal, and having a diagnosis of dementia, seen as ‘an older person’s disease’. Participants with YOD described the impact of no longer driving as something that made them feel older than they were and out of sync with peers and society. Choosing to stop driving before a decision was imposed enabled some to avoid embarrassment and exert control.	… basically everyone I know is at work (RD01). it’s limited her independence for activities in that she can’t just jump in the car and go down to the shops, spontaneous stuff (CP013). … he cannot sit at home on his own, he needs people around him and people that don’t have dementia around him so I have gone out into the community as much as I can, and locally, and found suitable activities to stimulate him (CP012). Can you imagine your life if every time you went out, you had to call somebody to book to come and pick you up? There would be no spur of the moment, I will pop down the shop and get that or if something happens to the kids, I will dash up and sort something out for the kids. It’s well, hang on I will see if I can get somebody to get me there and that’s not independence by any means (RD08). Driving’s been a part of your life for so long—and when that goes it’s, yeah, you’re lost and you suddenly then sit there and go, I’m only 62 and I—I’m not that old, or am I? (RD04). I reckon, it was—it’s easier for me, in a way because I voluntarily handed it [licence] in, but if you had the police come up to you and go, ‘You’re no longer driving Sunshine’, that would be a real hit in the guts… where I did it voluntarily and—so the impact of such isn’t as bad. Yeah, like I said, I still miss it, I miss it a lot and, yeah, my heart goes out for those people who had them taken off them (RD04).
Coping and adjustment
This theme describes the process of transitioning to driving cessation, experienced as a time of intense emotions, that sometimes stay intense and sometimes move towards acceptance. Topics included decision-making, discussions around driving, driving assessments and adjustment to the decision. Safety, loss of confidence and feelings of regret were discussed in relation to driving cessation and feelings of anxiety and unfairness were associated with driving assessments. There seemed to be no consensus or easy way to assess medical fitness to drive that would not create anxiety and would feel valid to all participants.	it’s like you get your legs cut off… (RD04). …safety for him and for other people on the road, and for anyone who he had in the car with him because he didn’t think he had a problem (CP011). Arguments arise when I say she shouldn’t drive to a certain place (CP013). None of the controls were like a normal car that I have driven… I went to take the handbrake off and there was no handbrake, I said to him, ‘Where’s the handbrake?’ and he said, ‘Oh you just press that button’ and I said, ‘You’re kidding me, you are expecting me to become a pilot and drive a car that doesn’t have normal controls like a car that most of us would be driving?’ (RD08). …that I have to go to my GP and then my GP, who’s never been in a car with me ever, and not likely to ever be in a car with me, looks at me and I look at her and I go, ‘Look, if I felt in any way I was a risk on the road…’ … I would be the first to go, ‘I have to stop driving because I do not want to be at all responsible for causing an accident’. I mean, many able-bodied people have accidents … and if I felt that I was starting to make mistakes, you know, I’d self-diagnose there and go, oh, you know, I just shouldn’t be driving (RD01).
How to meet needs
Participants with YOD and care partners identified areas of need to support driving and driving cessation, and strategies used to improve their outcomes. Topics included preparation, education, accessing information and supports, better driving assessments, alternative transport options and support groups. Dementia-specific groups were seen not only as a valuable source of information and support but as facilitating connections with others who have shared experiences. The need for such connections was identified by those living rurally, although the logistical challenges with organising this in isolated communities was acknowledged. Attention to acceptance of fitness to drive decisions through involving trusted people was also recommended.	if the early detection was perfected maybe there would be more time for people to get used to the idea that they’re probably going to have—not be able to drive (CP010). I’ve been diagnosed with early onset Alzheimer’s, what’s my duty of care—to notify someone and who do I notify and how do I go about it? (RD010). you see, where we are we’re so isolated it’s, even if you arranged, …where they can get together and, you know, … that they’re not alone, they’re not the only ones that have had to do this, had to hand licences in…but to do that you’d have to, like, arrange a bus or something to go around and pick up all the ones in the country to take them there…it would be a logistics nightmare to organise all that…(RD04). … so I think if you can say you can’t drive and obviously be very empathetic, you know; this is awful, we know that it’s terrible, these are the reasons why, but here’s some things we’re going to do to try and ease the burden of not having a driver’s licence anymore (CP014). …it is very hard to get the person to accept it. For them to actually recognise that they have diminished in that capacity. That’s where they need the support of people that, whose opinions they respect (CP012).