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Both groups agreed that a lack of preparedness for the loss of driving entitlement contributed significantly to difficulties associated with cessation. Groups explained that both health professionals and people with dementia lacked awareness of the requirements and alternatives following diagnosis and in many cases the issue of driving was not discussed until the point of being asked to cease driving. A recurrent theme from both groups suggested that an early awareness and an active involvement in the process of

127 driving cessation was a factor in aiding the transition. The VSG members explained that a lack of self-determination in the process made ceasing driving more difficult. The value of information at the earliest opportunity was considered necessary in enabling the person with dementia to play a more collaborative role in their relationship with medical

practitioners involved in their care. Janice suggested that patients should be encouraged to seek an active collaboration with their general practitioner or consultant.

So there might be a reason why they would want you to stop driving in the doctor’s eyes, but I think what we need to do is to pinpoint and say driving might be an issue and that maybe you need to discuss it with your GP and you definitely need to inform the DVLA - that’s one of the major things. Janice. VSG meeting 4, 146 - 152.

Similarly, Cath highlighted the difficulties of medical professionals in making judgements regarding a person’s continued driving safety without a satisfactory dialogue with the person or the ability to gather sufficient and reliable evidence.

I think the screening tool would empower GPs as well because I think sometimes the GPs really don’t know and then the consultant psychiatrist only comes and talks to us whereas the GP would have something were they feel a little bit more empowered. Cath. SIG meeting 2, 187 - 190.

Living after Driving

The effects of driving cessation were discussed in detail by both groups. The experience and perspectives of the groups however differed somewhat. The SIG members were acutely aware of the consequences of ceasing driving. Experience centred upon the change in the overall level of participation in instrumental activities of daily living of the person and the detrimental effect this had upon established life routines and broader well-being.

128 But a lot of the partners don’t drive. You think, if Harry doesn’t drive, I’m not going to be able to get to the shops, I’m not going to be able to get to the ... It’s affecting their life isn’t it? Rebecca. SIG meeting 1, 219 – 222.

The VSG discussed the issue of driving cessation at length. The group members explained their experiences and expressed the ways in which the move from using a privately owned vehicle to public transport affected their daily routines. Neville richly illustrated the practical difficulties of using public transport.

When you have to give up driving, a lot of people, particularly older people, use their cars to go shopping. So then you are going to have to think of getting a taxi to get your shopping or get a bus. Then you’ve got all the shopping that you are carrying and you are getting on a bus. People get mixed up. They get on the wrong buses. That’s fraught with more problems and difficulties [rather] than just bunging everything in the back of your car and going two hundred yards up to your house. You set off and they have notices up you haven’t to stand up until it stops, but they don’t stop if you don’t stand up... My wife sometimes... They have set off before she has sat down but you can’t hold onto your shopping and hold onto the rail to get on and off. Neville. VSG meeting 2, 588 - 598.

Janice explained that using public transport also demands a greater level of interaction with others using the transport which can be concerning and present unfamiliar problems for people with dementia.

I had the misfortune of having to get a bus from my house here and it’s only a straight road. I was terrified. Apart from the fact that people feel that they had the need to talk to you. I don’t want to talk to anybody first thing in a morning. I couldn’t stand up, you are going backwards and forwards as they are stopping. It took years off my life. Janice.VSG meeting 2, 600 - 607.

129 Proposals to assist with replacing driving were felt to have met with limited success. However, a number of suggestions relating to alternatives to driving were already

employed by many of the group members who acted as carers of the family member with a dementia. Alice, a member of the VSG had employed many of the strategies discussed in the group sessions.

The things we suggested I already do. I have my prescriptions delivered, I order them. I get my meals delivered too. I can get the hairdresser to visit but if the weather isn’t bad I just get a taxi. Alice. VSG Meeting 5, 185 - 188.

Implications for the Information Pack: Discussion

Members of the SIG described experiences of patients who had considered driving soon after diagnosis and actively prepared for eventual cessation. These patients were reported to have managed driving and the move to end driving with greater ease and success when compared with those patients who had not. In contrast, patients who had not paid regard to driving earlier were more likely to find the loss of driving more challenging. Although recognition of the benefit of early planning of driving with dementia was recognised, a number of the SIG reported that driving was often a difficult issue for them to address. Reasons for this were that driving was often not a pressing issue on an initial contact but also health professionals were uncertain of licensing process, the scope of their role and necessary inputs.

The transition from driver to non-driver presents a number of challenges. The SIG’s broad impression regarding the attitude of family members towards driving was that they were typically defensive of the person’s ability to continued driving. SIG members reported family members minimising or denying difficulties with driving and delaying attempts to

130 address the issue. VSG members offered a different perspective of the role of family members. VSG members explained that although family members may have concerns regarding the person’s driving safety, involvement in the process of revoking driving entitlement would harm the relationship between the driver and family member (Bernhart and Penazola, 2013). The group members also expressed a deep sense of guilt associated with responsibility for the person being forcibly stopped from driving.

The SIG members discussed the importance of driving as a key component in managing household activities such as shopping and attending appointments. Alternatives to driving were discussed and suggestion broadly grouped into two approaches. The first approach was to consider physical alternative modes of transport such as private hire taxis, buses, trains and lifts from friends and family. The second approach examined the value of reducing the need to travel by arranging for the goods or services to be delivered to the person’s home. The VSG members, although understanding of the need to identify a replacement for driving, were broadly doubtful whether public transport could offer a comparable alternative. Concerns centred on the ability to manage the complexities and the physical demands of travelling by public transport. Members of the SIG stated that the cost of taxi services, even for relatively routine journeys might be prohibitive. The VSG and SIG recommended that examples should be included in the information section of the final document with the aim of encouraging early contingency planning and testing of possible alternatives for their suitability and to promote familiarity.

5.7 Chapter Summary:

Chapter five has described the collaborative development of the data that formed the basis of the information section of the final document. Both research groups considered the lack

131 of consistent and reliable information regarding driving with dementia to be a fundamental issue and one that ought to be addressed by the research. Both groups considered societal understanding of dementia and explored how structural stereotyping negatively affected attitudes towards people with dementia continuing to drive. The meanings associated with the action and role of driving were also examined. The chapter considers changes in driving performance as a consequence of dementia and determines how these may manifest in behavioural differences from typical driver behaviours. Finally, both groups explored driving management and cessation strategies. Both groups agreed that early involvement in the monitoring, planning and decision making process would enable people with dementia and their families to be an integral part of the management of driving. Both the SIG and VSG groups were also clear that people with dementia should be made fully aware at the earliest opportunity of the eventual need to cease driving, as a consequence of the diagnosis of dementia. This was considered key in enabling the person opportunity to reflect and actively participate in practical planning for eventual cessation. The next part of the thesis presents the findings relating to the creation of the screening element of the final tool.

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Chapter Six: Development of the Screening Element:

Chapter Introduction:

Chapter six will present the findings in relation to the screening element of the final tool. As with the previous chapter, the data are organised and presented to reflect the themes emergent from the group meetings. These were then used to explore, inform, develop and finally construct the screening elements of the final pack. A discussion of the findings is included within the chapter, immediately following the presentation of the findings, to enable the reader to remain close to the development process and detail the relevance to the components of the screening tool. The chapter will again replicate the structure of the final tool including the findings relating to the screening element of the final tool.