Introduction

Dementia causes progressive impairments to memory, executive function, motor skills, attention, and other cognitive functions that are essential for safe driving [1]. As such, driving cessation is an inevitable consequence of a dementia diagnosis [1]. Research has demonstrated that for older people living with a dementia diagnosis, driving cessation is a challenging life transition, associated with multiple negative consequences for individuals, including increased risk of depression, anxiety, loneliness, and isolation [2].

Driving is an important instrumental activity of daily life for older people [3], a way to access services and social activities [4]. People with young onset dementia (diagnosed before age 65 years, “YOD”) may be uniquely affected by driving disruptions given their relatively greater financial, occupational, and familial responsibilities [5, 6]. That is, driving cessation may impact an individual’s continued employment or ability to contribute to household chores.

Without access to transportation, individuals with dementia may become increasingly isolated and reliant on family members or caregivers for transportation, which can limit the person with YOD’s ability to maintain their social connections and engage in activities outside the home. Social isolation can lead to a decline in physical and mental health, including increased depression and anxiety, and more rapid cognitive decline [7]. Therefore, supports needed to address these unique challenges are likely to be different to those provided for older people.

The predominance of research to date has focused on older people living with dementia [8, 9] and these data lack applicability for young people with dementia. Understanding the unique lived experiences of people with YOD confronting driving cessation may guide design and delivery of age-appropriate support programs. The aim of this review was to synthesise the available literature to identify what is known and what is not known about the lived experiences of people with YOD and their care partners when confronting driving cessation, and to explore the availability of interventions to support driving cessation in this population. Our research questions were:

  • What are the lived experiences of people with young onset dementia and their care partners/family members regarding driving and driving cessation?;

  • What is the available evidence for the effectiveness of psychosocial programs to support people living with young onset dementia and their care partners when giving up driving?

Method

Information sources and search strategy

A comprehensive search of the literature was conducted using the scoping review methodology prescribed by Arskey and O’Malley [10] to gain an understanding of the research that has been conducted to date. A search strategy was developed to identify studies about driving cessation among people with YOD. The search was conducted in December 2022, and updated in December 2023, in MEDLINE, CINAHL, PsycINFO, Scopus, ProQuest, the Cochrane Database, and Google Scholar. Reference lists of all included papers were hand-searched for additional records. The following search terms were used:

(“Dementia” OR “Alzheimer*” OR “frontotemporal” OR “Pick” OR “Lewy*” OR “semantic” OR ‘‘corticobasal degeneration’’ OR ‘‘progressive supranuclear palsy’’ OR ‘‘progressive aphasia’’ OR ‘‘cognitive impairment’)

AND

(“Young*” OR ‘‘Young* onset’’ OR ‘‘Early onset’’ OR ‘‘presenile’’)

AND

“Driv*” OR OR “driving cessation” OR “driving retirement” OR “transport” OR “mobility”.

Eligibility criteria

This review included English-language papers published since 1998, reporting research investigations or evaluation examining experiences related to driving cessation that include or are written by people living with young onset dementia and/or their care partners/family members. We kept the breadth of sources broad because our initial scoping search revealed a lack of research in this area. Systematic and other literature reviews, study protocols, opinion pieces, and papers not available in English were excluded.

Study screening and data extraction

One author (BWH) screened all titles identified by the searches and removed irrelevant papers. Two reviewers (BWH and BK) screened abstracts and full texts for eligibility based on the criteria previously described. Disagreements regarding inclusion were resolved upon discussion of two reviewers. In total, 10 papers met the criteria and were included in our review (see Fig. 1).

Fig. 1
figure 1

Flow diagram showing identification of studies for inclusion in this review according to PRISMA guidelines [11]

Full size image

Two reviewers (RJ and TM) extracted the data using a data extraction spreadsheet that was piloted with five papers before finalisation and continuation with the remaining papers. Independently extracted data was cross-referenced for accuracy, and disagreements between authors were resolved by checking with a third author (TS). Extracted data included first author, title, year, country, study aim, study design, number of participants, participant details, data collection method, intervention or activity assessed (if applicable), outcomes reported, results, and conclusions. We planned a narrative approach to presenting the results, given a great degree of variation in designs and heterogeneity in the outcomes across the retrieved studies. To achieve this, we used content analysis procedures, focusing on extracting relevant data, grouping them together by meaning, and synthesising them into coherent, consistent, relevant, and clearly defined themes. To ensure rigour of the data extraction, data charting, and theme identification process, the research team convened regularly to discuss and resolve any ambiguities.

Results

Identification and selection of included studies

A total of 1631 records were retrieved through database searching and three records were identified via reference list review. A total of 1226 records were retained for screening after duplicates were removed. Following title and abstract screening, 44 articles remained for full text review. A total of 34 articles were excluded because they did not meet the inclusion criteria as shown in the Fig. 1 PRISMA flow diagram [11]. Ten studies met all criteria. Papers included qualitative descriptive studies (n = 9), and retrospective record reviews (n = 1). Papers were from the United Kingdom (n = 5), the United States (n = 1), Australia (n = 2), Sweden (n = 1), and Italy (n = 1). Year of publications spanned from 2004 to 2023. These studies included 248 participants in total, although only two studies, focused specifically on driving cessation.

Characteristics of included studies

Table 1 summarises key characteristics for all included studies. Of the ten included studies, two focused specifically on driving. The remaining eight examined the broader lived experiences of individuals with YOD, including the impacts on their social, occupational, and daily lives, as well as on the family members of individuals with YOD. Although driving and driving cessation were not the main focus of these studies, the data extracted from them highlighted driving cessation as a significant challenge post-diagnosis. The results indicated the following areas of concern for people living with YOD and their family members: loss of independence; role change; threat to self-identify; feelings of isolation, grief; acceptance; and predictors of driving cessation. Loss of independence was commonly reported as being of most concern across the included articles.

Table 1 Summary information of included studies
Full size table

Loss of independence

People living with YOD report that they require support from family and friends to assist them in their daily activities once they have ceased driving [12, 15, 16, 19, 20]. Studies reported loss in relation to no longer being able to drive, losing independence and becoming reliant on someone for driving, which was a significant challenge to individuals as well as their family members who must take over driving [15, 16, 20]. Former drivers face significant challenges in accessing their communities when they must rely on a partner or family member for transportation. This loss of independence is particularly pronounced in rural and regional areas, where scarcity of public transport exacerbates the challenges [13, 20].

Additionally, decisions about driving and stopping driving might be imposed on the person living with YOD, such as when health professionals’ or care partners’ main focus was on issues of risk and danger. It appeared that such risk assessments were not always conducted with a client’s best interests in mind. For example, some individuals may lose their independence earlier than necessary – be it driving privileges or lone public transport travel – due to proxy assessments deeming it ‘too high risk,’ potentially reflecting stigma-related biases [12, 13, 20].

Role Change

The changes in roles after driving cessation affected both the person living with YOD and their family member [12, 13, 15, 16, 18,19,20]. These studies emphasise the unique challenges of giving up driving for people living with YOD, highlighting that their needs are vastly different from those of older adults. They emphasised that younger individuals face the loss of employment, and income alongside increased stress due to responsibilities such as caring for children, managing a mortgage, and running a business.

Dependency on a partner who is still driving, difficulties with adjusting to being a former driver, and allowing a partner take over the driver role were added challenges for people living with YOD and their partners [13, 16, 18]. When a person with YOD ceases driving, it can increase the caregiving tasks of their family members. Additionally, people with YOD may find it extremely difficult to no longer contribute to running the household, such as by driving their younger children to activities [16, 19, 20].

Threat to Self-Identity

Self-identity may be disrupted after driving cessation for people living with YOD [14,15,16, 20]. People with YOD struggled with losing their own identity and saw themselves as no longer being a productive member of society after licence removal [16, 20]. Scott and Colleagues [20] report how care partners perceive the impact on the self-identity of individuals who have had to quit their job due to a driving disruption. As one care partner described how the removal of their mother’s licence affected their mother’s ability to maintain her own small business, and how losing her small business, “was like her losing part of her identity” [15, daughter, p.4]. Another described their care partner’s identity loss in terms of ‘masculinity’, stating, “when him and I went into [licencing authority] and he handed in his licence and he said, “you know, you’ve – you’ve cut off my legs”. “And then a couple of weeks later we sold his ute [utility truck]”… he said “and now you’ve gone and cut off my balls.” – “that’s just the way he felt”’ [15, wife, p.4.].

One way to cope with the threat to identity and regain a stable sense of self may be through cognitive dissonance, by downplaying the importance of driving or one’s driving capabilities, to divert blame away from the disease itself. For example, if a person did not pass their fitness to drive assessment, they might attribute it to outdated driving techniques they were taught, rather than the disease itself [14, 15].

Feelings of isolation, grief

Once people living with yod ceased driving, their activities were considerably reduced, which created feelings of isolation [17, 18]. The inability to independently get to places diminished people’s social lives, leaving them feeling isolated [8, 18]. For persons living in rural areas, driving cessation can result in feelings of isolation and a sense that the person’s life has ended. Studies described participants experiencing a profound sense of loss and disconnection from their communities and families. While families may be at work all day, these individuals are often sat at home, alone, watching cars pass by [17, 20].

Feelings of grief followed driving cessation for some individuals with YOD according to included studies [18, 20]. The forfeiture of a driving licence, or even the idea of it, was described as experiencing a great loss. Grief was sometimes mentioned when discussing the decision to give up a driver’s licence [18, 20]. Participants may have accepted that they felt too unsafe to drive or they may have been told by someone that they should no longer drive, but after driving cessation, nevertheless experienced feelings of sadness and hopelessness at not being able to continue [18, 20].

Accepting a diagnosis of YOD

Accepting a diagnosis of YOD can be especially hard for younger people due to the belief that dementia is an older person’s disease; this can affect how people’s driving cessation journey can differ. For example, if someone does not accept their YOD diagnosis, they are more likely to continue driving without recognising the risks, making the process of driving cessation more challenging for both them and their family members. For example, “It took over 1 year before we sought help. He didn’t accept the condition, he still used to drive” [17, wife, p.2245].

Predictors of driving cessation

Women were found to be more cautious about driving and more easily persuaded to stop driving by health professionals and family members, according to one study where 59.4% of people living with YOD who stopped driving were women [21]. Whereas men tended to believe that they were more competent, fearing the loss of independence, and felt it was more shameful to admit their inability to drive – hence were less likely to cease driving according to Velayudhan and colleagues [21]. A significant predictor of driving cessation in people living with YOD was a deficit in praxis. People with less impaired comprehension (i.e., those who were more aware of the limits of their driving abilities) were more likely to stop driving.

Programs to support people living with YOD through driving cessation

Our second question was “What is the evidence for the effectiveness of psychosocial programs to support people living with young onset dementia and their caregivers when giving up driving?” We found little evidence across the retrieved articles of supported psychosocial programs that directly addressed the emotional challenges of driving cessation or offered alternative transport services, for people living with YOD. Additionally, Chirico and colleagues [13] reported a lack of professional services providing the types of needed information for services to persons with YOD/care partners. Elaborating that it appeared to be by chance whether patients and care partners were given such information. Additionally, there were issues with some services being unequally distributed across cities, or not being available at all in places, which meant that persons with YOD had to rely solely on family members/care partners for transport in the absence of such dedicated transport services.

Scott and colleagues [20] found it challenging for both care partners and persons with YOD to access information and support programs after diagnosis [20]. Care partners raised the need for person-centred approaches to support, rather than information leaflets, which were considered less useful [20]. Peer-to-peer support for driving cessation was highlighted as especially helpful. For example, a buddy system and regular telephone contact with someone who has already experienced the process of driving cessation could provide valuable support for those newly diagnosed who have to stop driving.

Discussion

This scoping review sought to determine the experiences of people living with YOD and their care partners regarding driving and driving cessation. Additionally, we sought to assess the evidence for the effectiveness of psychosocial programs to support people living with YOD and their care partners when giving up driving. This was the first paper to synthesise the experiences of people living with YOD directly related to driving cessation. Given that only ten studies were included, with only two studies that focused specifically on driving cessation, this review highlights the narrow scope of research that has been conducted about the experiences and needs of people with YOD. Further, the review identified no existing interventions to address the challenges of driving cessation that are specifically targeted for people with YOD.

The analysis of our first question revealed some common experiences related to driving cessation for people living with YOD, including loss of independence, change in family role, threat to self-identify, feelings of isolation, acceptance, grief, and predictors of driving cessation. These findings are consistent with research relating to older people with dementia, where driving cessation was associated with significant declines in physical and social functioning, and poorer physical and mental health outcomes [22]. Driving cessation is consistently cited as one of the most challenging milestones in the lived experience of dementia, representing a profound shift in the breadth of everyday life [23, 24]. The accessibility of transport alternatives varies and is affected by the infrastructure available in the person’s location, their financial means, availability of formal and informal care, and other factors [25]. As such, the impacts of driving cessation can be inequitable and disproportionately burden those already at risk for poorer outcomes.

While similar issues and challenges related to driving cessation have been raised by older people with dementia, the circumstances, and contexts for people with YOD are unique. Anosognosia (i.e., lack of insight) and impulsivity, which are common in forms of dementia that emerge in midlife, pose major risks for driving safety [26]. This lack of insight can make it difficult for individuals to understand the necessity of stopping driving, leading to conflicts and additional challenges for family members. Consequently, driving cessation further disrupts the family dynamics, compounding the grief associated with a diagnosis of YOD. Younger people with dementia generally experience symptom onset at a time of high professional, familial, and financial responsibility [27]. Driving cessation can be a barrier to employment and early workforce departure is a source of major ongoing financial burden for the person with YOD and their family [28]. People with YOD may have caring responsibilities for both children and ageing parents, and inability to drive limits the caring contributions that can be made. These care responsibilities may then compound on the person with YOD’s primary caregiver (e.g., their spouse). As such, driving cessation should be understood as a contributor to the whole-family burden that more commonly occurs for people with YOD than for older people with dementia [29].

In relation to our second question, we found no evidence of psychosocial programs for specifically targeted toward people living with YOD for driving cessation. However, there are general programs available, including self-guided resources [30, 31], decision-making tools for stopping driving [32, 33], and care-provider delivered interventions to facilitate driving retirement for older people [34] and older people living with dementia [8]. Despite the recognised importance of addressing the unique social challenges of people faced by people with YOD [5, 6], there is a lack of studies that have specifically addressed the supports and services needed to facilitate the transition from driving to non-driving in this population.

Strengths and limitations of the scoping review

Given the limited research available on this topic thus far, we deliberately maintained broad search parameters to encompass a wide range of studies, irrespective of their specific focus or research design, with the objective of capturing all related literature. This review highlights the lack of empirical evidence on the lived experience of people with YOD and their family members. For example, only two of the included studies focused exclusively on driving, however only one of these captured lived experiences, the other was a chart audit of prevalence and factors affecting driving cessation. In addition, it is important to note that the results presented for ‘accepting a diagnosis of YOD’ and ‘predictors of driving cessation’ are each based on findings from a single study. A further limitation may be that, by excluding non-English articles, we have missed research findings, perspectives, and cultural nuances relevant to the objectives of this review.

Conclusion

To date, the majority of research on driving cessation has primarily focused on older people with dementia, which may overlook the unique lived experiences of people with YOD. More comprehensive research is needed to inform the development and implementation of support programs tailored to the specific age-related needs of people with YOD.