The fear – and implications – of stopping driving due to vision loss cannot be overstated, according to new research released by Macular Disease Foundation Australia (MDFA) as part of this year’s Macula Month awareness campaign.
Conducted in collaboration with the School of Optometry and Vision Science at the University of New South Wales, MDFA’s Social Impact Survey of almost 1,500 Australians living with macular disease found that the overwhelming majority (79%) of people who have stopped driving due to vision loss feel less independent, with more than a third (38%) feeling socially isolated as a consequence.
The research also showed as many as one in three people (29%) are less satisfied with life as a result of not being able to drive anymore. Other ways driving cessation impacted respondents included feelings of becoming a burden on others, inconvenience when having to find alternative means of travelling, and not being able to participate in hobbies due to travel distance.
For people with macular disease who are still driving, more than half (56%) indicated that they are very concerned about losing their driver’s licence, with the overwhelming majority (73%) indicating that they are worried about losing their independence if they stop driving. Almost one in three people (28%) keep driving because someone relies on them to do so.
“… as many as one in three people (29%) are less satisfied with life as a result of not being able to drive anymore
Broad, Deep Impact
CEO of Macular Disease Foundation Australia, Dr Kathy Chapman, believes the survey findings shine a spotlight on the broad and deep impact stopping driving can have on people’s lives and mental wellbeing.
“The resulting loss of independence and emotional strain that stopping driving can have on people should never be underestimated, which is evident in our survey,” she said. “Importantly, it may mean some people are unable to get to their sight-saving treatment appointments, which is very important as missing treatments can have huge impacts on vision.
“It can also lead to people deciding it’s too difficult to leave the house, while others will avoid travelling because they don’t want to be a burden on their family and friends for a ride. Consequently, visiting loved ones becomes less frequent, and hobbies and other social events are dropped because getting there is now a bus or train ride away, which is total new territory for some people who’ve always relied on their car to get around.
“We know that this physical and social isolation can lead to loneliness and mental health issues. The loss of a driver’s licence can also be the loss of many things a person holds dear, so I encourage eye health professionals to put their patients in touch with our Eye Connect service, which can provide practical and emotional support during what is a tough transition for many people,” Dr Chapman said.
Other key findings included:
- More than one in three respondents (35%) have stopped driving, with three in four relying on friends and relatives to drive them.
- More than half (59%) of survey respondents currently drive a car, of which 58% were ‘very’ to ‘completely’ confident in their driving.
- Advanced vehicle technologies (AVTs) such as adaptive cruise control are becoming standard in cars. While some respondents reported that AVTs, like navigation systems, help with their driving (44%), over one-third (36%) did not have any installed in their car.
Family Concerns
Of those survey respondents who have stopped driving, poor vision was the most cited reason (67%), followed by a doctor’s recommendation to do so (18%). Almost one in 10 people (9%) stopped driving due to family recommendation, like Rita Walker,* 93, who lives with geographic atrophy and gave up driving after her family raised concerns about her safety on the road.
“It was actually while I was driving that I first started becoming aware that there was something wrong with my vision,” explained Ms Walker. “I was a great driver – I loved driving – but I started to notice black cars were disappearing and I was getting very wary on the road. I persisted for a couple of years, until my kids said to me that I needed to stop driving because it was becoming too dangerous. They said, ‘you’re going to kill somebody, or you’re going to kill yourself, mum.’ So, when I was 79 years old, I handed in my licence.
“Giving away that part of my independence was really hard because I used to drive my grandkids to the caravan that we had down the coast. I found not being able to do that anymore very hard.
“I also don’t get to see friends as much as I used to. I can’t take myself up to church like I used to do; I have to ask my children to take me. Even now, when I’m in the car with my kids, I’m driving in my mind from the passenger side. My peripheral vision still works!”
Giving away that part of my independence was really hard because I used to drive my grandkids to the caravan that we had down the coast
Perceptions of Wider Community
But what about the people who aren’t living with macular disease?
To supplement the Social Impact Survey findings, MDFA conducted a separate survey with the broader Australian population who don’t have a macular disease diagnosis about how vision loss and losing their ability to drive would impact them.
The YouGov survey of more than 1,000 people aged 50–70 years revealed that losing the ability to drive due to blurred or loss of central vision is the activity that they would miss the most (77%), followed by reading (71%), watching TV and movies (69%), and living independently (64%).
Over eight in 10 (85%) respondents would be significantly or somewhat impacted if they were unable to drive due to blurred or lost central vision, including 70% who said it would significantly impact their independence, sociability, and ability to perform daily routines.
Almost half of respondents (45%) ranked loss of sight as their number one health concern, with four in five (92%) finding it among their top three health concerns.
Supporting Patients to Prepare for Change
MDFA’s Eye Connect service can help patients manage the emotional transition to life without driving, and prepare for the time when they are unable to drive or require extra support to drive safely. Some practical steps patients can take include:
- Looking for local services or social activities that are closer to home,
- Making use of transport services offered by local community organisations and councils to get to shopping centres and other important destinations,
- Researching and familiarising themselves with public transport options in their area, and
- Driving in the daytime only, when nighttime driving is too risky.
Eye health professionals can refer their patients to Eye Connect to find out more about how to navigate the changes in driving ability. Visit mdfoundation.com.au/health-professional/refer-to-eyeconnect, refer via Oculo or call MDFA on (AUS) 1800 111 709.
Patients can also self-refer via MDFA’s website or over the phone.
* Patient name changed for anonymity.
Further reading: Tackling the Tough Conversation: Fitness to Drive.
Carol Kilkenny is the National Manager, Research and Advocacy, Macular Disease Foundation Australia.
