New decision aid booklet targets driving and dementia

New decision aid booklet targets driving and dementia

Telling someone with dementia they should stop driving is not an easy thing to do.

But this difficult task, often undertaken by health professionals, has been made a lot easier to tackle with the release of a free decision aid booklet designed specifically for drivers with dementia. It’s a timely release with Dementia Awareness Week occurring from 16-22 September including World Alzheimer’s Day on 21 September.

Dr John Carmody (pictured above) is a Senior Staff Specialist Neurologist at Wollongong Hospital and Clinical Theme Leader for Neuroscience and Mental Health at the Illawarra Health and Medical Research Institute based at the University of Wollongong (UOW). He is nearing completion of his PhD studies at UOW with his studies involving the development and testing of this decision aid booklet.

Dr Carmody said it was hoped that the booklet would initially assist people with dementia plan for retirement from driving in Australia and New Zealand.

He said the best approach may not be to directly confront individuals or their carers but to give them the tools they need to make the decision for themselves.

Researchers who have skills in medicine, nursing, occupational therapy, public health, psychology and road safety have all helped participate in the development of the booklet. It has resulted from strong cross faculty collaboration at UOW along with assistance from Rob Reynolds at Roads and Maritime Services in Wollongong. Other researchers involved in the project include dementia researcher Associate Professor Victoria Traynor (UOW); Cathie Andrew (UOW) whose focus groups findings were the first stage of this project; Professor Elena Marchetti (UOW) who assisted on the legal and ethical issues on dementia research; and UOW project officers Kate Lewis and Nadine Veerhuis.


Team members involved in the creation of a new decision aid booklet targeting driving and dementia are (from left): Rob Reynolds, Cathie Andrew, Associate Professor Victoria Traynor, Professor Elena Marchetti and Dr John Carmody.

“GPs are often reluctant to discuss the issue because they are too worried that any conversation will jeopardise a lifelong relationship with their patients at a time when they most need their GPs,” according to Associate Professor Traynor.

“As a result, decisions are being made far too late in the journey, often when things have come to crisis point. Medical colleagues feel it is necessary to take licences away. We also know that families don’t know what to do for the best and resort to hiding car keys and disengaging car engines which, of course, antagonises the individual. People feel that retiring from driving equals a loss of freedom -- we want those losses to be less devastating,” she said.

Asked at what level of memory loss one is okay to drive, Dr Carmody said that some people with early/mild dementia were safe to drive.

He said that dementia was gradually progressive and it was very difficult to accurately determine when someone has become unsafe to drive.

“Early discussion and planning are important strategies. Review by a GP or specialist every six months is wise,” he said.

The decision aid booklet has already been reviewed by local, national and international clinical and research experts and piloted by individuals living with dementia.

The booklet is divided into four stages of decision making, with prompts and questions around knowledge, values and support, and is designed to help both the individual and the families.

Media contact: Associate Professor Victoria Traynor on + 61 2 4221 3471 or +61 438 219 484.