A review article published in the journal BMC Geriatrics explores and summarizes the lived experiences of ceasing driving due to young-onset dementias like FTD, finding that families are often left to navigate the associated challenges on their own.

Driving Often Cessation Occurs During Peak of Family Life and Career

Dementias like FTD are progressive conditions with symptoms that will make everyday activities increasingly difficult. Early in the journey with FTD or another dementia, driving may still be possible; however, the progression of symptoms will eventually make this cognitively demanding activity unsafe. Because young-onset dementias (YODs) such as FTD, early onset Alzheimer’s Disease, or early onset Lewy Body Dementia, often strike while people are raising a family and managing a career, the impact of driving cessation can be more pronounced on affected families.

The authors of the review note that most research on driving cessation and dementia has focused on older people, with the research likely unable to translate to younger people with dementia. The authors conducted a scoping review of existing research to establish what we do and don’t know about driving and YOD.

The researchers analyzed the abstracts of 1226 studies before narrowing their search to 44; after a full-text review of the articles, 10 studies remained that met the authors’ criteria. These studies included the experiences of 248 people with dementia, with some studies offering data from care partners.

In addition to identifying predictors of the likelihood of someone with dementia ceasing driving, the review article summarized five areas of concern that were shared between study participants:

• Loss of Independence: Relinquishing the independence of driving is a significant challenge for people with FTD and other YODs. It can be difficult to spend time around the community or beyond when persons diagnosed have to rely on family members for transportation. The authors note that this loss is more pronounced in rural communities, where lacking public transport options adds additional challenges.
• Role Changes within Family: Because YODs strike during peak family and career years, people diagnosed face unemployment, reduced income, and greater difficulty caring for their family and home due to a lack of mobility. The changes in responsibilities to other household members not only add additional stress to the family but can leave persons diagnosed feeling like they are no longer contributing.
• Threat to Self-Identity: The impact of driving cessation on the well-being of persons diagnosed can be significant. Many aspects of their lives are abruptly altered, such as no longer being able to work or travel on their own. Often, it can feel as if they have lost part of themselves; one woman remarked how her mother losing her small business due to ceasing driving from YOD felt “like her losing part of her identity.”
• Grief and Isolation: Being unable to travel independently greatly impacted the social lives of persons diagnosed, with feelings of isolation being common; for those in rural areas, this isolation can feel even more pronounced. Often, persons diagnosed feel disconnected from their community, mainly because they are usually home while family are at work or school. Losing a driver’s license can cause profound grief as persons diagnosed mourn the life and activities they were used to.
• Acceptance of Diagnosis: Accepting a diagnosis of a YOD like FTD can be difficult, primarily due to the stigma of dementia being an “old person’s disease.” How someone accepts their diagnosis can affect how they accept driving-related challenges; someone who does not accept their diagnosis is more likely to continue driving, for example.

In exploring predictors of someone’s likelihood of accepting driving cessation, the authors found that women more quickly accepted the need to stop driving; in one study, 59.4% of people with YOD who stopped driving were women. Men often felt it was shameful to admit their inability to drive.

Little Support Exists for Diagnosed People Navigating Driving Cessation

Given the wide-reaching effects that driving cessation can have on people diagnosed with FTD and other YODs, it is essential that support services be provided to help them through the transition. However, the authors found little evidence of psychosocial programs that addressed the emotional challenges of driving or that offered alternative transportation options.

Crucially, the authors also found a lack of services providing information for people affected by YODs – if families received information on support services, it was often a result of pure luck. Support services were also found to be inequitably distributed, with most being found in larger cities, leaving families to meet the transportation needs of loved ones with YODs.

The authors found that care partners had repeatedly raised the need for person-centric approaches to support in place of brochures and informational flyers. Peer-to-peer support for driving cessation was proposed as an example; a person preparing to cease driving could be paired with another person diagnosed who already has, providing them with support from a place of understanding. The authors underscored the need for further research into this area so that proper support programs can be implemented.

The AFTD Persons with FTD Advisory Council previously discussed driving cessation in an issue of AFTD’s Help & Hope newsletter, exploring the lived experience of relinquishing driving after diagnosis.

Are you or a loved one navigating having to stop driving due to FTD? AFTD’s HelpLine is here to help; reach out to the HelpLine at 1-866-507-7222 or info@theaftd.org.