John Carmody

Development and pilot testing of a decision aid for drivers with dementia

BackgroundAn increasing number of older adults drive automobiles. Given that the prevalence of dementia is rising, it is necessary to address the issue of driving retirement. The purpose of this study is to evaluate how a self-administered decision aid contributed to decision making about driving retirement by individuals living with dementia. The primary outcome measure in this study was decisional conflict. Knowledge, decision, satisfaction with decision, booklet use and booklet acceptability were the secondary outcome measures.MethodsA mixed methods approach was adopted. Drivers with dementia were recruited from an Aged Care clinic and a Primary Care center in NSW, Australia. Telephone surveys were conducted before and after participants read the decision aid.ResultsTwelve participants were recruited (mean age 75, SD 6.7). The primary outcome measure, decisional conflict, improved following use of the decision aid. Most participants felt that the decision aid: (i) was balanced; (ii) presented information well; and (iii) helped them decide about driving. In addition, mean knowledge scores improved after booklet use.ConclusionsThis decision aid shows promise as an acceptable, useful and low-cost tool for drivers with dementia. A self-administered decision aid can be used to assist individuals with dementia decide about driving retirement. A randomized controlled trial is underway to evaluate the effectiveness of the tool.

Barriers to Qualitative Dementia Research The Elephant in the Room

As our population is aging, the global prevalence of dementia is rising. Recent extensive reviews of the dementia literature highlight a clear need for additional qualitative research to address the experiences of people with dementia and their carers. To date, the vast majority of published dementia research is quantitative in nature and, perhaps not surprisingly, attracts the bulk of government funding. In contrast, qualitative dementia research is poorly resourced and less frequently published. Although a myriad of factors are responsible for this dichotomy, we propose that inadequate funding represents the “elephant in the room” of dementia research. In this article, we describe and emphasize the need for qualitative dementia research, highlight existing barriers, and outline potential solutions. Examples of barriers are provided and theoretical underpinnings are proposed.

Driving, dementia and Australian physicians: primum non nocere?

Older Australians are increasingly reliant on automobiles as their sole form of transport. As our population is ageing and the prevalence of dementia is increasing, it is anticipated that the number of drivers with dementia will rise over time. Much of the literature relating to driving and dementia focuses on safety rather than mobility. The objective of this paper is to highlight several topical ethical issues that pertain to Australian drivers with dementia. It is recommended that future research, policy and practice should centre on the crucial mobility and transport needs of our senior citizens.

Driving with dementia: Equity, obligation, and insurance

Driving is a complex task, yet some people with dementia are capable of driving safely.1–5 As driving a vehicle is a privilege and not a right,6–8 clinicians are often called upon to provide guidance regarding their patients’ ability to drive safely.1,9,10 The Australian Bureau of Statistics has predicted that by 2056, one in four Australians will be aged over 65.11 Older members of our community are increasingly dependent upon the private car as their preferred, and in some cases only viable, mode of transport.5,8 Given that the prevalence of dementia rises with age, we can expect an increased number of drivers with dementia on our roads.5 As outlined in the National Health and Medical Research Council 2013–15 Strategic Plan, Australian health ministers have designated dementia and injury prevention as national health priority areas.12 Thus, there now exists both an impetus and an opportunity to address the issue of driving and dementia on a national level. The purpose of this editorial is to consider: (1) the social impact of a loss of licence; (2) driver and health professional obligations to report conditions that can adversely affect driving; and (3) the response of motor vehicle insurers to the issue of driving with dementia.

Electronic discharge summary driving advice: Current practice and future directions

BACKGROUND Driving is a complex task. Many older drivers are unaware of their obligation to inform authorities of conditions which may impact upon their driving safety. AIMS This study sought to establish the adequacy of driving advice in electronic discharge summaries from an Australian stroke unit. METHOD One month of in-patient electronic discharge summaries were reviewed. A predetermined list of items was used to assess each electronic discharge summary: age; gender; diagnosis; relevant co-morbidities; deficit at time of discharge; driving advice; length of stay; and discharge destination. RESULTS Of 41 participants, the mean age was 72 years. Twenty patients had a discharge diagnosis of stroke, nine of transient ischaemic attack, four of seizure and one of encephalitis. Of these, only eight discharge summaries included driving advice. CONCLUSION The documentation of driving advice in electronic discharge summaries is poor. This has important public health, ethical and medico-legal implications. Avenues for future research are explored.

Developing a decision aid for drivers living with dementia: supporting consumers and carers in the process of making decisions about driving retirement

Abstract of paper that presented at the Occupational Therapy Australia, 25th National Conference and Exhibition, 24-26 July 2013, Adelaide Convention Centre.Abstract of paper that presented at the Occupational Therapy Australia, 25th National Conference and Exhibition, 24-26 July 2013, Adelaide Convention Centre.Abstract of paper that presented at the Occupational Therapy Australia, 25th National Conference and Exhibition, 24-26 July 2013, Adelaide Convention Centre.

Dementia, driving retirement and decision aids.

The recent editorial by Yates and Ibrahim1 was a mature and balanced account of an increasingly important medical and social issue: what is the role of physicians vis a vis driving and dementia? In contradiction to Olivers juxtaposed entreaty to avoid the internet,2 Ibrahims impressive online educational video3 addresses the sensitive topic of driving cessation with aplomb. Similarly thoughtful approaches to this vexed topic may be found elsewhere.4-6 There are three points, we wish to add. Disciplines Medicine and Health Sciences | Social and Behavioral Sciences Publication Details Carmody, J. & Traynor, V. (2014). Dementia, driving retirement and decision aids. Journal of the Royal College of Physicians of Edinburgh, 44 (4), 349-349. This journal article is available at Research Online: http://ro.uow.edu.au/smhpapers/2418

Author reply: To PMID 23745993.

We thank Regal for his interest and his kind comments regarding our paper. Our principal aim was to highlight several key ethical issues faced by Australian physicians (e.g. reporting obligations, negative consequences of driving cessation). Regal raises a challenging, yet unresolved, dilemma: which test best determines safe driving capacity? Although an in-depth appraisal of existing tests was beyond the scope of our paper, we did refer to two seminal reviews. The Australian and New Zealand Society of Geriatric Medicine (ANZSGM) and the American Academy of Neurology (AAN) have comprehensively reviewed the existing literature regarding assessment of fitness to drive of individuals with dementia. Neither organisation supports sole reliance upon occupational therapy assessments in determining driving safety. As quoted in our paper, the AAN systematic review concluded that ‘there is no test result or historical feature that accurately quantifies driving risk’. Additionally, in relation to driving simulators, the ANZSGM notes that ‘most evidence indicates that performance in driving simulators is not strongly related to on road driving performance’. In an attempt to ease the transition to driving retirement by individuals with dementia, we are currently testing a novel Decision Aid booklet in a randomised controlled trial (HREC 12/016) in Australia and New Zealand. It is hoped that this novel approach will assist drivers with dementia planning for driving retirement. Early discussion of this issue may negate the need for abrupt and potentially distressing licence withdrawal at a later date. Potential participants or interested clinicians are welcome to contact Dr Carmody (+61 2 4253 4430 or john.carmody@sesiahs.health.nsw.gov.au) to enrol or learn more.