Year

2015

Degree Name

Doctor of Philosophy

Department

Faculty of Science, Medicine and Health

Abstract

Dementia refers to a syndrome characterised by a progressive deterioration of memory and at least one other cognitive domain which interferes with daily function and independence. Epidemiological data indicate the prevalence of dementia to be 6.4% of those aged over 65. Recent estimates by the World Health Organisation claim that 35.6 million people have dementia. It is expected that this figure will double every 20 years to 115.4 million by 2050. The issue of driving is critically important for people as they age prompting calls for the development of interventions to maintain the mobility of older adults. Given the rising number of drivers with dementia on our roads, the poor uptake of public transport by older people and the negative consequences of driving cessation, there is a clear need for novel strategies to enhance both personal independence and community safety. Most medical and vehicle licensing authorities concur that individuals with moderate or severe dementia cannot drive safely. However, there remains a lack of consensus regarding the impact of mild dementia on driving ability.

The principal aims of this thesis were threefold. First, to determine the approach adopted by doctors toward drivers with dementia. This required investigation of: (i) the knowledge, attitudes and behaviour of junior doctors; (ii) the provision of driving advice in hospital discharge summaries; and (iii) Australian reporting obligations and medico-legal frameworks. Second, to create a user-friendly decision aid for drivers with dementia. International decision aid quality criteria were adopted to ensure that this decision aid would lead to: (i) reduced decisional conflict; (ii) improved knowledge levels; and (iii) enhanced decisional satisfaction. Last, to make a meaningful contribution to academic literature, public policy and future research regarding driving and dementia. This necessitated the provision of: (i) a management approach for general practitioners; (ii) an overview of existing dementia-related decision aids; (iii) an analysis of the ethical issues faced by physicians; and (iv) a review of the barriers commonly encountered during qualitative dementia research.

This thesis by publication consists of a series of interwoven studies and reviews which address the topic of driving and dementia. Qualitative, quantitative and mixed-methods approaches were adopted, as needed, during the construction of this body of work. As with most research involving people with dementia, prospective ethical approval was secured.

Decision aids are evidence-based tools which help patients (and carers) participate in choosing among health care options. Several high-quality dementia-related decision aids already exist. This thesis incorporated the development of a novel decision aid tailored for drivers with dementia. Following a successful pilot study of 12 local participants, a prospective interventional cohort study was conducted in Australia and New Zealand among 20 participants. Following use of the decision aid, decisional conflict, knowledge and satisfaction with decision improved. Acceptability levels were high. As the first self-administered decision aid designed specifically for drivers with dementia, this booklet represents an acceptable, person-centred and low-cost intervention of relevance to an expanding portion of the community.

In summary, with the rising prevalence of dementia and an increasing reliance upon the private car, drivers with dementia require non-adversarial guidance. Of paramount importance is the need to carefully balance personal independence with community safety: aegrescit medendo. Amidst this context, the thesis achieved three meaningful outcomes: (i) contributed to knowledge regarding the approach of doctors toward drivers with dementia; (ii) created a decision aid which can assist people with dementia retire from driving; and (iii) informed debate, public policy and future research. Lastly, it is hoped that this body of work will counter a lingering social taboo: driving by people with mild dementia.

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