Hanging up the car keys hard for people with young onset dementia

University of Queensland research has highlighted the need for specialised support services to help people with young onset dementia cope with giving up driving.

Dr Theresa Scott from UQ’s School of Psychology reviewed the experiences of 248 participants across 10 studies from countries including Australia, United Kingdom, United States, Sweden and Italy.

“The study participants had been diagnosed with dementia before the age of 65, and approximately 60 per cent were male,” Dr Scott said.

“There were some common experiences reported when the participants had to stop driving, including a loss of independence, shifts in family dynamics, threats to self-identity, feelings of isolation, reduced mobility, difficulty accepting their diagnosis and grief.

“Older people with dementia face similar issues when they have to stop driving, but the circumstances for people with young onset dementia are unique so more tailored support is needed.”  

Dr Scott said lack of insight and impulsiveness are common in forms of dementia that emerge in midlife and pose major risks for driving safety.

“This lack of insight can make it difficult for people to understand why they need to stop driving, leading to conflicts and additional challenges for family members or carers,” she said.

“Younger people with dementia also face the added strain of professional, family and financial responsibilities which can have more of an impact on family than in older people with dementia.”

Almost 29,000 Australians currently live with young onset dementia, with the figure projected to rise to more than 41,000 by 2054.

Dr Scott said developing new programs to transition away from driving will improve the quality of life for this growing population.

“There isn’t adequate post-diagnostic and post-driving support for people with young onset dementia and their families,” Dr Scott said.

“Currently there are only general programs available such as decision-making tools for stopping driving, and interventions for driving retirement for older people.

“But this younger group requires age-appropriate psychosocial programs that include educational, emotional, and practical support tailored for their unique challenges.

“We’re hoping to secure funding to adapt and implement UQ’s driving cessation intervention designed for older people with dementia, to suit those with young onset dementia.

“We’re also aiming to develop a video-based driving safety test and resources for primary care providers to assess fitness to drive for people diagnosed with young onset dementia.”

The research was published in BMC Geriatrics.