Many people with dementia will require significant emotional and practical support during the process of giving up driving, and caregivers should be encouraged to begin a conversation as early as possible. Linda Belardi reports.

It is inevitable that a person with dementia will need to stop driving at same point. However, what is less clear is when that right time might be.

It is widely accepted many individuals with mild dementia can continue to drive safely, and in fact, research has shown that the risk of motor vehicle collisions due to drivers with early dementia is equivalent to those of the same age without dementia.

Alzheimer’s Australia says a diagnosis of dementia should not automatically preclude someone from getting behind the wheel. “A diagnosis does not determine an individual’s ability to drive,” says the organisation’s driving policy statement.

“Each person has individual driving capabilities and will experience a different pattern and timing of impairment as their particular condition progresses.”

The organisation also warns that any automatic link between a diagnosis of dementia and the removal of a driver’s licence could provide a disincentive to a person presenting for early diagnosis and treatment.

Understanding the risks

“We shouldn’t be as scared as we are about people with early dementia and cognitive impairment continuing to drive because the statistics around harm to others are really not there,” says Professor Joseph Ibrahim from the Department of Forensic Medicine at Monash University and a consultant physician in geriatric medicine.

He says it’s important that health professionals adopt an individualised approach to a person driving with dementia and thoughtfully weigh up a number of factors and competing interests, including a person’s capability, their need for driving and what the consequences are if they stop.

“Health professionals need to look at the balance of how important is driving to that person’s life and what’s the risk in those specific circumstances – not a one-size-fits-all approach.”

A person’s risk is not static and so an individual’s abilities should be continually reassessed and monitored as their condition progresses to ensure their ongoing safety, says Ibrahim.

Alzheimer’s Australia says deciding to limit when and where a person drives may be an appropriate stage in the decision process for some people with early dementia.

A balancing act

While the temptation may be to take a precautionary approach and stop everyone with dementia from driving, Ibrahim says such an approach fails to take into account the quality of life impacts on the person with early dementia and a person’s right to mobility.

“Doctors and health professionals in general like to minimise risk and keep their patients safe, and so they think that it is safer to stop someone from driving without thinking of the consequences that has on a person’s life,” he says.

Telling a person to stop driving may lead to significant social isolation, depression and negatively impact on self-esteem, says Ibrahim. It also places a significant burden on informal carers, he says.

Dr Jacqueline Liddle, occupational therapist and postdoctoral research fellow with the School of Health and Rehabilitation Sciences at the University of Queensland, says driving can form a significant part of an older person’s identity and that attachment to driving can make losing the ability to drive particularly distressing.

As part of her research into the experiences of older people going through this transition, she asked them what driving meant to them. “For some it’s a very convenient and familiar way of getting from A to B, but for other people it is part of them. It was their entry into adulthood. It was part of their job or family holidays.

“Some people showed me pictures of the cars they have had or their empty garage or an old licence. Driving was a symbol of their independence,” Liddle says.

Rigid approaches to driving with dementia can also deter people with cognitive symptoms from seeking medical advice if they fear having their license being taken away.

An Alzheimer’s Australia Victoria report in 2013 said anecdotal evidence suggested a small number of people were avoiding getting a diagnosis of dementia in order to remain driving.

Ibrahim says complicating the decision-making process further is the lack of a simple objective test that medical professionals can use to reliably distinguish between safe and unsafe drivers. Relying on the subjective judgments of medical professionals leads to variable outcomes, with some people stopping driving too soon and others too late.

On-road driving assessments can also be very expensive, especially for rural drivers, and there is a shortage of specialised occupational therapists to conduct them.

Rural settings

In an article published in Injury Prevention in June, Ibrahim and colleagues from Monash University and Ballarat Health Services argue that rural drivers in the early stages of dementia should be allowed to drive with a greater level of cognitive impairment than those in urban centres.

The controversial proposal seeks to recognise the likely lower crash risk in rural areas due to reduced vehicle and pedestrian traffic, and the higher costs of stopping driving, including a greater loss of access to healthcare and a greater risk of social isolation and carer burden.

“What is being proposed is a risk management approach that accepts a degree of risk in exchange for enhanced benefits for the individual and their family,” they write.

“All the dimensions of the individual must be taken into account in assessing risk, including where he or she lives. The real challenge is to ensure that the wellbeing of older people with dementia is not undermined by overly risk-averse policies or practices.

“Insofar as possible, decisions should be evidence-based and not discriminate simply because of the presence of old age or disease.”

Accepting some risk

Ibrahim points to the issue of alcohol and driving as an example of society’s tolerance for some level of risk on the road and says the same principles should apply for drivers with early stage dementia.

“People drink alcohol and drive, and as a society we have drawn the line at a blood alcohol limit of 0.05. … We have in a sense accepted that risk but we have never actually said it out loud.”

When it comes to dementia, however, he says there is an assumption that no level of risk should be tolerated.

Ibrahim says no one is arguing that people with severe dementia should be on the road. However, for those with mild dementia who are still functioning well, removing their right to drive can have significant impacts on the person that are not proportional to the level of risk posed to themselves and the community.

Getting the right support

Liddle, who has studied the needs of people with dementia and their carers as they stop driving, says the transition to giving up driving is often gradual and requires different support at different stages.

At the early stages older people value good information about their circumstances and, as they modify or reduce their level of driving, practical support to broaden out their use of alternative methods of transport, she says.

Many people often experience a ‘crisis stage’ as their condition progresses and require help with problem solving, resolving family conflict and preventing social isolation, she says. Grief support also helps individuals to cope with the loss of driving and the emotional toll on the person and their family.

There is also the need for caregiver support as the process can go on for many years and some carers said they felt exhausted by the end, she says.

Ibrahim says it’s important to begin a discussion early about the transition to becoming a passenger, which involves a lot of forward planning.

In addition to providing valuable community transport options, Liddle says community aged care providers have an important role to play in noticing when older people need support during the process of adjustment and connecting people with others in a similar experience.

“There seems to be a key role for peers as well, so it might be that community providers can connect people up with other people who are experiencing the same thing. In our UQDrive program for older drivers we use peer leaders, so older people who have successfully stopped driving and still stay involved in their communities, and it’s quite powerful to show that a person can have a good life without driving.”

Useful resources:

An extended version of this article appears in the current issue of Community Care Review magazine (August).

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