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IP Online First, published on June 19, 2015 as 10.1136/injuryprev-2015-041601 Policy forum
Inequity in health: older rural driving and dementia
drivers with dementia and practical implications for licensing policies.
drugs on performance be considered by medical practitioners in assessing patients, as sedation may be an issue especially at higher doses.10 Those who are prescribed antipsychotics are likely to have moderateto-severe disease, and should, therefore, not be driving. On the other hand, antidepressants (and cholinesterase inhibitors) may improve performance if the anxiety and depression accompanying dementia are particularly debilitating.
DIAGNOSIS AND EFFECTS OF DEMENTIA ON DRIVING
STIGMA OF DIAGNOSIS
The risk of motor vehicle collisions due to drivers with early dementia is equivalent to age-matched controls,5 and it is estimated that 22%–46% of patients with mild-tomoderate dementia continue to drive.6 There is, therefore, an ill-defined window of time during which drivers with a diagnosis of dementia can drive as safely as other drivers of the same age. Most available evidence pertain to Alzheimer’s dementia, the general consensus being that it is usually safe to drive for about 3 years following onset of the disease.7–9 The rate of deterioration varies, with vascular dementia more likely to remain stable over time yet being more unpredictable, and frontotemporal and dementia with Lewy bodies (table 2) requiring earlier driving cessation.1 In addition to the impact of the disease on driving, the effect of medications commonly prescribed in dementia or associated conditions must be taken into account. The most commonly prescribed medications are likely to be antidepressants. Current Australian ‘fitness to drive’ guidelines ask that the effect of these
Once a diagnosis of dementia is made, drivers in many Organisation for Economic Co-operation and Development (OECD) countries are subjected to tests and restrictions, which other individuals at equivalent risk levels are not. Testing regimens may not consider the ‘individual’ driver’s behaviour or their ability vis-à-vis their particular needs (eg, a short trip for milk and bread purchases) or the requirements of the task (eg, driving in a small town vs driving when a highway transects the town). Some may stop driving prematurely and unnecessarily due to the burden of testing.11 Thus, the driver licensing system may directly or indirectly perpetuate discrimination against older people with dementia, and they may be less able to perceive and challenge it.12 Stigma and discrimination have a pervasive and damaging impact on the lives of older people with dementia. Fear of the potential consequences can contribute to a reluctance to seek treatment and a delay in dementia diagnosis.13 Stigma compounds a person’s loss of independence,
Noha Ferrah,1 Alfredo Obieta,2 Joseph Elias Ibrahim,3,4 Morris Odell,5 Mark Yates,6 Bebe Loff7 INTRODUCTION The number of drivers with dementia is expected to increase exponentially over the coming decades. Most individuals with moderate-to-severe dementia (table 1) are unfit to drive.1 Drivers with moderate-tosevere dementia have higher rates of MVCs than age-matched controls.2 Identifying and preventing these individuals from driving is crucial, particularly in urban areas. The density of cars and pedestrians, and the complexity of traffic typically place greater demands on drivers in urban areas, and, therefore, require greater reactivity and forward planning than in rural environments.3 4 The ability to drive is a critical means of maintaining one’s social inclusion, and is commonly a practical necessity. Therefore, decisions about the entitlement to drive should not unfairly restrict mobility or unnecessarily compound the disadvantages experienced by older people with mild cognitive impairment and early dementia (table 1), particularly as diagnoses are now being made earlier.1 This paper describes the difficulties inherent in addressing the question of when and in what circumstances a diagnosis of dementia might render a person unfit to drive and focuses on those who live in rural areas. We examine the consequences of dementia diagnosis on driving, driver testing requirements and licensing procedures, and the impacts of driving cessation. We then discuss how living in rural areas may alter the level of risk of
Table 1
Definition
Proportions
Symptoms
Mild/early dementia
Deficits are present in several domains, but the individual can function with minimal assistance
55% of individuals with late-onset dementia
Moderate dementia
Deficits become more severe; increasing levels of assistance are required
32% of individuals with late-onset dementia
Severe/late dementia
Total dependence on others for care and supervision
13% of individuals with late-onset dementia
Moderate memory loss especially for recent events, some impairment with problem solving and orientation to time, may require prompting for some personal-care tasks Severe memory loss, difficulties with orientation to time and place, severe impairment in judgement and problem solving, need for assistance with personal-care tasks and emergence of behavioural difficulties (eg, wandering, disinhibited behaviour) Very severe memory loss (including inability to recognise familiar people) and impairment in judgement, problem solving and language skills, requires substantial assistance with personal care and increased behavioural difficulties
1
Health Law and Ageing Research Unit, Department of Forensic Medicine, Monash University, Victoria, Australia; 2Sub-acute Services, Ballarat Health Services, Ballarat, Australia; 3Health Law and Ageing Research Unit, Department of Forensic Medicine, Monash University, Southbank, Victoria, Australia; 4Sub-Acute Services, Ballarat Health Services, Ballarat, Australia; 5 Clinical Forensic Medicine, Victorian Institute of Forensic Medicine, Monash University, Southbank, Victoria, Australia; 6Sub-acute Services, Ballarat Health Services and Deakin Clinical School at Ballarat Health Services, Australia; 7Michael Kirby Centre For Public Health and Human Rights, School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia Correspondence to Professor Joseph Elias Ibrahim, Health Law and Ageing Research Unit, Department of Forensic Medicine, Monash University, Southbank, Australia; [email protected]
Prevalence, types and clinical stages of dementia
Stage
Sources: adapted from ref. 43.
Ferrah N, et al. Inj Prev Month 2015 Vol 0 No 0
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1
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Policy forum more appropriate than age-based testing, which is increasingly deemed discriminatory.18 Accordingly, in Western and South Australia, mandatory driving tests for older drivers were recently abandoned. Safe driving requires a complex set of skills drawn from three key domains: vision, cognition and motor.19 Cognition is perhaps the most difficult domain to assess, and screening tools such as the mini-mental status examination and the clinical dementia rating do not actually assess functions specific to driving ability.1 There is, in fact, no validated ‘doctor’s room’ or ‘across-the-desk’ tool that reliably distinguishes between safe and unsafe drivers.20 This along with the progressive nature of dementia and the significant variation in the capacity of individuals to compensate for disabilities21 22 make assessment of fitness to drive a challenging task. Questions arise about when and how these decisions should be made, and by whom. In the UK, Canada and a number
Table 2 Proportion of dementia types Dementia type
Proportion (%)
Alzheimer’s disease (include early-onset, diagnosed before 65 years old, and late-onset) Vascular dementia Mixed dementia Lewy body dementia Frontotemporal dementia Parkinson’s dementia Other
62 17 10 4 2 2 3
Sources: adapted from ref. 43.
their role and identity that frequently follows a diagnosis of dementia.12
DRIVER TESTING REQUIREMENTS AND LICENSING PROCEDURES Age-based driver testing was introduced in several jurisdictions in Australia and other OECD countries (table 3)14–16 based on the assumption that older drivers are dangerous. However, higher crash and fatality rates among older
drivers may be better explained by their frailty17 and the short distances they travel, or ‘low mileage bias’.18 Drivers travelling long distances have lower crash rates per kilometre than those driving fewer kilometres. Older drivers tend to cover less distance per trip, and hence, have a lower accumulated driving distance per year.18 In recent years, some jurisdictions have recognised that function-based testing is
Table 3 Licensing requirements for car licenses for older drivers in selected jurisdictions Licensing procedures and starting age Jurisdiction
Renewal
Vision test
Medical test
Knowledge test
Road test
Australia Victoria, Tasmania, Northern Territory, South Australia Australian Capital Territory New South Wales
– – 75
– 50 75
– 75 75
– – –
80 –
80 75
80 75
– –
– – 85 (unrestricted licences only) – –
81 – 65 Age depends on jurisdiction Age depends on jurisdiction
– 70 – Age depends on jurisdiction –
– 70 70 –
– –
75 –
–
–
–
–
–
Age depends on jurisdiction Age depends on jurisdiction –
Age depends on jurisdiction –
Age depends on jurisdiction –
–
–
–
–
–
–
–
–
Age depends on jurisdiction 80 –
–
–
–
– –
Age depends on jurisdiction – –
80 –
– –
75
75
75
–
–
Western Australia Queensland USA Illinois District of Columbia Nevada Arizona, Florida, Georgia, Maine, Maryland, Oregon, South Carolina, South Dakota, Utah, Virginia Hawaii, Idaho, Indiana, Iowa, Kansas, Missouri, Montana, New Mexico, North Carolina, North Dakota, Rhode Island, South Carolina, Texas Europe Denmark, Finland, Ireland, Italy, The Netherlands, Portugal Denmark, UK, Finland, Ireland, Italy, The Netherlands, Portugal Belgium, France, Germany, Sweden Canada British Columbia, Nunavut, Yukon, Newfoundland, Quebec, Alberta, Northwest Territories Ontario Manitoba, Prince Edward Island, Nova Scotia, New Brunswick, Saskatchewan New Zealand New Zealand Sources: adapted from ref. 14.
2
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Policy forum of states in the USA and Australia, medical practitioners advise patients that they are no longer fit to drive; patients then have the responsibility to inform the Driver Licensing Authority (DLA).1 In some jurisdictions,i it is mandatory for medical practitioners to report unfit drivers to the DLA,10 yet they are generally reluctant to do so owing to the negative effects this has on the doctor–patient relationship and adverse medical outcomes.23 Likewise, informing drivers of their unfitness to drive may reduce their willingness to seek healthcare.24 However, if a choice is to be made between relying on medical practitioners and leaving the decision to the patient or carer, medical practitioners are to be preferred. Drivers tend to overestimate their driving performances.25 This overconfidence may be exacerbated in drivers with dementia due to impairment in their insight and judgement.26 Similarly, caregivers may overestimate or underestimate their loved ones’ capacities as they may rely on them for transportation, or fear they will become responsible for chauffeuring them following license revocation.27
IMPACTS OF DRIVING CESSATION A prohibition on driving has numerous and profound impacts on individuals with dementia and their families. As noted above, these may precede license revocation, as individuals avoid seeking medical attention, presumably for fear of losing their licence. 24 Driving cessation may lead to significant isolation and increased prevalence of depressive symptoms,28 and loss of independence, identity and self-esteem.24 It may limit access to family, friends, health and community services and local businesses.9 It places a significant burden on caregivers,29 and is an independent risk factor for transition into residential aged care (nursing homes).30 Although individuals residing in urban areas have access to a greater availability of public transport, primary care and specialist health providers, they may perceive public transport in some regions as inadequate28 as stops and stations may be too distant from where they are or wish to go, schedules may be inconvenient, travel routes limited and services infrequent.31 Consequently, those who must cease driving may become reliant on family and friends to meet their transport needs.28
i
South Australia, Northern territory.
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LIVING IN RURAL AREAS AND RISK OF DRIVERS People with dementia who live in rural areas are likely to experience an added set of challenges.32 These include lower incomes, poorer living conditions, social isolation, lack of access to services, amenities and material resources, as well as social and economic losses linked to rural–urban migration and greater exposure to occupational hazards and adverse environmental events.32 33 In Australia, living in a rural or remote community is associated with higher mortality, lower life expectancy and greater use of hospital emergency departments as a source of primary care.34 In the USA, UK and Australia, older adults are over-represented in rural areas,31–33 yet there is a dearth of research investigating the impact of driving cessation on this population,35 particularly those with dementia. Following revocation of their licence, as noted, drivers with dementia in urban and suburban areas often rely on caregivers for transportation. The losses associated with driving cessation are likely to be magnified in rural areas, insofar as reliance on cars is greater as the trips required to fulfil most ordinary needs are generally longer, and availability of alternative means of transportation is limited.24 Therefore, driving cessation by older drivers in rural communities is likely to result in greater loss of healthcare access, and magnifies social isolation and the burden on carers than in cities. On average, rural drivers travel larger distances, which has consistently been associated with lower crash rates per unit distance travelled.18 In fact, older drivers who drive long distances are thought to be safer than other age groups.19 Rural centres have a lower car and pedestrian density and less traffic complexity3; thus, it is likely that rural drivers with early dementia have a reduced risk of motor vehicle collisions relative to their urban counterparts.
ACCEPTING A CERTAIN LEVEL OF RISK As the cost of driving cessation is greater in rural than in urban areas, and, on the assumption that the risk of crashing may be less, it is suggested that licensing authorities should permit a greater degree of cognitive impairment when assessing fitness to drive among drivers in the early stages of dementia in rural centres. An individualised approach might take into account the risks and benefits of ‘premature’ driving cessation on the individual driver and as a family member. The decision-making process would consider the individual in their
physical and social context.24 Ideally, this requires a case management team approach involving members from disciplines, including medicine, social work, occupational therapy and family members. However, the limited availability of suitably trained professionals in rural regions in many OECD countries is itself a serious problem.31–33 Consideration must also be given to the benefits of training programmes aiming at improving cognitive abilities, which may produce enduring improvements in a number of functional skills, including driving.36 Unlike cognitively intact older drivers who reduce the complexity of their journeys or cease to drive,37 drivers with dementia may have impaired insight and ability to make such adjustments and/ or to comply with restrictions. Therefore, frequent reassessment of function in the multiple domains required for safe driving is crucial to ensure driving remains at an adequate level of safety. The transition period may also be smoother if patients are engaged early in self-assessment, discussing modifying driving behaviours and when to cease driving.1 The proposal that rural drivers in the early stages of dementia be allowed to drive with a greater level of cognitive impairment than those in urban centres is controversial. What is being proposed is a riskmanagement approach that accepts a degree of risk in exchange for enhanced benefits for the individual and their family. Risk management is a critical, ubiquitous and highly complex endeavour.38 Many decisions, including all ‘fitness-to-drive’ assessments involve defining what represents an acceptable risk for the individual and society. Setting legal blood alcohol levels illustrates this trade-off. Alcohol consumption is a major burden of morbidity and mortality in middle-income and high-income countries.38 Yet most countries place the threshold of blood alcohol levels for driving at 50 or even 80 mg/dL rather than zero, despite the fact that some driving functions become impaired prior to reaching the legal limit.39 Society accepts a level of risk in order to preserve for individuals and those who depend on them the convenient option of driving. What constitutes an acceptable risk? In the case of alcohol consumption, young and commercial drivers are subjected to more stringent requirements because of the higher risk to self and others. When the risk is perceived as acceptable, society is more lenient, for example, in East Germany, following the reunification, the blood alcohol limit was raised from 0 to 80 mg/dL.40 If research establishes the risk 3
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Policy forum posed by drivers with early dementia is lesser in rural than in urban areas, the degree of cognitive impairment that society is prepared to tolerate among those drivers could shift to reflect this. Other medical disorders such as diabetes mellitus can impair the ability to drive, yet akin to dementia, they are not alone sufficient to warrant license revocation.41 Individuals with these diagnoses residing in rural areas could, therefore, also benefit from these recommendations.
PRACTICAL IMPLICATIONS FOR CURRENT LICENSING DECISION-MAKING Validated tools to determine the level of risk posed by drivers in the early stages of dementia to themselves and others do not exist.20 Current guidelines and interventions used to inform decisions made by clinicians about the risks of drivers with dementia are fraught with uncertainty, and it is still not known whether driving assessment of individuals with dementia prevents crashes or fatalities.20 An important consideration to adapting policies for rural drivers is the potential consequences of a collision involving a driver with early dementia who may not have, otherwise, been allowed to drive in urban areas. Assessing someone as being fit to drive does not guarantee that they will not be involved in a collision. It simply recognises that they pose an acceptable risk. Should a crash occur, questions may arise regarding the liability of the driver, medical practitioner and licensing authority. Decisions about fitness to drive in an individual with early dementia will inevitably be subject to intense legal scrutiny. This places a responsibility on clinicians to ensure their decision-making pathway is meticulously documented, wholly explicable and as far as possible, evidence-based. The current Australian guidelines on assessing fitness to drive10 refer to ‘the nature of the driving task’, ‘general functionality’ and clinical judgement as relevant considerations, which allows for a degree of latitude in the decision-making process. However, this discretion must be exercised very carefully, and decisions allowing drivers with a diagnosis of early dementia to continue to drive need to be well documented.1 The determination of levels of risk should incorporate an assessment of behavioural adaptations to the driving task and compensatory and optimisation strategies.20 Future tools may include an interviewbased assessment, taking into account crash history, family concerns, clinical condition and cognitive function, all of which have a 4
predictive value for crash risk that could inform the decision to proceed to formal road testing.42 Finally, frequent reassessments, monitoring driving performance and compliance with licensing conditions, as well as the ability to reverse licensing decisions should certain events (such as a minor crash) occur, are crucial to ensure driving remains safe. This is an inevitable trade-off when seeking to maintain mobility in a group of drivers with any progressive condition. This approach removes the disadvantage to rural drivers with dementia on the basis that they may have a reduced crash risk compared with urban drivers, yet comes at a necessary cost.
Provenance and peer review Not commissioned; externally peer reviewed. To cite Ferrah N, Obieta A, Ibrahim JE, et al. Inj Prev Published Online First: [ please include Day Month Year] doi:10.1136/injuryprev-2015-041601 Received 9 March 2015 Revised 14 May 2015 Accepted 26 May 2015 Inj Prev 2015;0:1–5. doi:10.1136/injuryprev-2015-041601
REFERENCES 1 2
3
CONCLUSION Road safety is an important component of a healthy community, and identifying drivers who pose an unacceptably high risk for crashes is a core responsibility of licensing authorities.21 In the absence of clear evidence to distinguish safe and unsafe drivers with dementia, the responsibility to make this distinction falls upon the treating doctor. 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 well-being of older people with dementia is not undermined by overly risk-averse policies or practices. Insofar as is possible, decisions should be evidencebased and not discriminate simply because of the presence of old age or disease. Notwithstanding the legal and practical aspects of enabling drivers with dementia in rural regions to continue to drive safely for as long as possible, the key is to devise better guidance and tools to assess the risk for these drivers. This is certainly preferable to the current status quo, where rural drivers fail to seek medical attention for fear of losing their license, and therefore, continue to drive at levels of risks that may be unacceptably high. Contributors JEI is the senior author and contributed to the conception and development of the ideas, drafting and critical revision of article draft and final approval. NF and AO are joint first authors as both contributed to conception, development, drafting and critical revision of the article draft and final approval. MY contributed to the conception, critical revision of the article draft and final approval. MO and BL contributed to critical revision of the article draft and final approval. Funding Support for the contribution of NF was provided by Department of Forensic Medicine, Monash University, Victoria, Australia. Competing interests None declared.
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dementia. Cochrane Database Syst Rev 2013;5: CD006222. Bohensky M, Charlton J, Odell M, et al. Implications of vision testing for older driver licensing. Traffic Inj Prev 2008;9:304–13. Marino M, de Belvis A, Basso D, et al. Interventions to evaluate fitness to drive among people with chronic conditions: Systematic review of literature. Accid Anal Prev 2013;50:377–96. Redelmeier DA, Yarnell CJ, Thiruchelvam D, et al. Physicians’ warnings for unfit drivers and the risk of trauma from road crashes. N Engl J Med 2012;367:1228–36. Yates M, Ibrahim JE. Responsible management of motor vehicle drivers with dementia. J R Coll Physicians Edinb 2014;44:4–7. Holland CA. Self-bias in older drivers’ judgments of accident likelihood. Accid Anal Prev 1993;25:431–41. Adler G, Kuskowski M. Driving cessation in older men with dementia. Alzheimer Dis Assoc Disord 2003;17:68–71. Brown LB, Ott BR, Papandonatos GD, et al. Prediction of on-road driving performance in patients with early Alzheimer’s disease. J Am Geriatr Soc 2005;53:94–8. Marottoli RA, de Leon CFM, Glass TA, et al. Consequences of driving cessation: decreased out-of-home activity levels. J Gerontol B Psychol Sci Soc Sci 2000;55:S334–40.
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Inequity in health: older rural driving and dementia Noha Ferrah, Alfredo Obieta, Joseph Elias Ibrahim, Morris Odell, Mark Yates and Bebe Loff Inj Prev published online June 19, 2015
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IP Online First, published on June 19, 2015 as 10.1136/injuryprev-2015-041601 Policy forum
Inequity in health: older rural driving and dementia
drivers with dementia and practical implications for licensing policies.
drugs on performance be considered by medical practitioners in assessing patients, as sedation may be an issue especially at higher doses.10 Those who are prescribed antipsychotics are likely to have moderateto-severe disease, and should, therefore, not be driving. On the other hand, antidepressants (and cholinesterase inhibitors) may improve performance if the anxiety and depression accompanying dementia are particularly debilitating.
DIAGNOSIS AND EFFECTS OF DEMENTIA ON DRIVING
STIGMA OF DIAGNOSIS
The risk of motor vehicle collisions due to drivers with early dementia is equivalent to age-matched controls,5 and it is estimated that 22%–46% of patients with mild-tomoderate dementia continue to drive.6 There is, therefore, an ill-defined window of time during which drivers with a diagnosis of dementia can drive as safely as other drivers of the same age. Most available evidence pertain to Alzheimer’s dementia, the general consensus being that it is usually safe to drive for about 3 years following onset of the disease.7–9 The rate of deterioration varies, with vascular dementia more likely to remain stable over time yet being more unpredictable, and frontotemporal and dementia with Lewy bodies (table 2) requiring earlier driving cessation.1 In addition to the impact of the disease on driving, the effect of medications commonly prescribed in dementia or associated conditions must be taken into account. The most commonly prescribed medications are likely to be antidepressants. Current Australian ‘fitness to drive’ guidelines ask that the effect of these
Once a diagnosis of dementia is made, drivers in many Organisation for Economic Co-operation and Development (OECD) countries are subjected to tests and restrictions, which other individuals at equivalent risk levels are not. Testing regimens may not consider the ‘individual’ driver’s behaviour or their ability vis-à-vis their particular needs (eg, a short trip for milk and bread purchases) or the requirements of the task (eg, driving in a small town vs driving when a highway transects the town). Some may stop driving prematurely and unnecessarily due to the burden of testing.11 Thus, the driver licensing system may directly or indirectly perpetuate discrimination against older people with dementia, and they may be less able to perceive and challenge it.12 Stigma and discrimination have a pervasive and damaging impact on the lives of older people with dementia. Fear of the potential consequences can contribute to a reluctance to seek treatment and a delay in dementia diagnosis.13 Stigma compounds a person’s loss of independence,
Noha Ferrah,1 Alfredo Obieta,2 Joseph Elias Ibrahim,3,4 Morris Odell,5 Mark Yates,6 Bebe Loff7 INTRODUCTION The number of drivers with dementia is expected to increase exponentially over the coming decades. Most individuals with moderate-to-severe dementia (table 1) are unfit to drive.1 Drivers with moderate-tosevere dementia have higher rates of MVCs than age-matched controls.2 Identifying and preventing these individuals from driving is crucial, particularly in urban areas. The density of cars and pedestrians, and the complexity of traffic typically place greater demands on drivers in urban areas, and, therefore, require greater reactivity and forward planning than in rural environments.3 4 The ability to drive is a critical means of maintaining one’s social inclusion, and is commonly a practical necessity. Therefore, decisions about the entitlement to drive should not unfairly restrict mobility or unnecessarily compound the disadvantages experienced by older people with mild cognitive impairment and early dementia (table 1), particularly as diagnoses are now being made earlier.1 This paper describes the difficulties inherent in addressing the question of when and in what circumstances a diagnosis of dementia might render a person unfit to drive and focuses on those who live in rural areas. We examine the consequences of dementia diagnosis on driving, driver testing requirements and licensing procedures, and the impacts of driving cessation. We then discuss how living in rural areas may alter the level of risk of
Table 1
Definition
Proportions
Symptoms
Mild/early dementia
Deficits are present in several domains, but the individual can function with minimal assistance
55% of individuals with late-onset dementia
Moderate dementia
Deficits become more severe; increasing levels of assistance are required
32% of individuals with late-onset dementia
Severe/late dementia
Total dependence on others for care and supervision
13% of individuals with late-onset dementia
Moderate memory loss especially for recent events, some impairment with problem solving and orientation to time, may require prompting for some personal-care tasks Severe memory loss, difficulties with orientation to time and place, severe impairment in judgement and problem solving, need for assistance with personal-care tasks and emergence of behavioural difficulties (eg, wandering, disinhibited behaviour) Very severe memory loss (including inability to recognise familiar people) and impairment in judgement, problem solving and language skills, requires substantial assistance with personal care and increased behavioural difficulties
1
Health Law and Ageing Research Unit, Department of Forensic Medicine, Monash University, Victoria, Australia; 2Sub-acute Services, Ballarat Health Services, Ballarat, Australia; 3Health Law and Ageing Research Unit, Department of Forensic Medicine, Monash University, Southbank, Victoria, Australia; 4Sub-Acute Services, Ballarat Health Services, Ballarat, Australia; 5 Clinical Forensic Medicine, Victorian Institute of Forensic Medicine, Monash University, Southbank, Victoria, Australia; 6Sub-acute Services, Ballarat Health Services and Deakin Clinical School at Ballarat Health Services, Australia; 7Michael Kirby Centre For Public Health and Human Rights, School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia Correspondence to Professor Joseph Elias Ibrahim, Health Law and Ageing Research Unit, Department of Forensic Medicine, Monash University, Southbank, Australia; [email protected]
Prevalence, types and clinical stages of dementia
Stage
Sources: adapted from ref. 43.
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Policy forum more appropriate than age-based testing, which is increasingly deemed discriminatory.18 Accordingly, in Western and South Australia, mandatory driving tests for older drivers were recently abandoned. Safe driving requires a complex set of skills drawn from three key domains: vision, cognition and motor.19 Cognition is perhaps the most difficult domain to assess, and screening tools such as the mini-mental status examination and the clinical dementia rating do not actually assess functions specific to driving ability.1 There is, in fact, no validated ‘doctor’s room’ or ‘across-the-desk’ tool that reliably distinguishes between safe and unsafe drivers.20 This along with the progressive nature of dementia and the significant variation in the capacity of individuals to compensate for disabilities21 22 make assessment of fitness to drive a challenging task. Questions arise about when and how these decisions should be made, and by whom. In the UK, Canada and a number
Table 2 Proportion of dementia types Dementia type
Proportion (%)
Alzheimer’s disease (include early-onset, diagnosed before 65 years old, and late-onset) Vascular dementia Mixed dementia Lewy body dementia Frontotemporal dementia Parkinson’s dementia Other
62 17 10 4 2 2 3
Sources: adapted from ref. 43.
their role and identity that frequently follows a diagnosis of dementia.12
DRIVER TESTING REQUIREMENTS AND LICENSING PROCEDURES Age-based driver testing was introduced in several jurisdictions in Australia and other OECD countries (table 3)14–16 based on the assumption that older drivers are dangerous. However, higher crash and fatality rates among older
drivers may be better explained by their frailty17 and the short distances they travel, or ‘low mileage bias’.18 Drivers travelling long distances have lower crash rates per kilometre than those driving fewer kilometres. Older drivers tend to cover less distance per trip, and hence, have a lower accumulated driving distance per year.18 In recent years, some jurisdictions have recognised that function-based testing is
Table 3 Licensing requirements for car licenses for older drivers in selected jurisdictions Licensing procedures and starting age Jurisdiction
Renewal
Vision test
Medical test
Knowledge test
Road test
Australia Victoria, Tasmania, Northern Territory, South Australia Australian Capital Territory New South Wales
– – 75
– 50 75
– 75 75
– – –
80 –
80 75
80 75
– –
– – 85 (unrestricted licences only) – –
81 – 65 Age depends on jurisdiction Age depends on jurisdiction
– 70 – Age depends on jurisdiction –
– 70 70 –
– –
75 –
–
–
–
–
–
Age depends on jurisdiction Age depends on jurisdiction –
Age depends on jurisdiction –
Age depends on jurisdiction –
–
–
–
–
–
–
–
–
Age depends on jurisdiction 80 –
–
–
–
– –
Age depends on jurisdiction – –
80 –
– –
75
75
75
–
–
Western Australia Queensland USA Illinois District of Columbia Nevada Arizona, Florida, Georgia, Maine, Maryland, Oregon, South Carolina, South Dakota, Utah, Virginia Hawaii, Idaho, Indiana, Iowa, Kansas, Missouri, Montana, New Mexico, North Carolina, North Dakota, Rhode Island, South Carolina, Texas Europe Denmark, Finland, Ireland, Italy, The Netherlands, Portugal Denmark, UK, Finland, Ireland, Italy, The Netherlands, Portugal Belgium, France, Germany, Sweden Canada British Columbia, Nunavut, Yukon, Newfoundland, Quebec, Alberta, Northwest Territories Ontario Manitoba, Prince Edward Island, Nova Scotia, New Brunswick, Saskatchewan New Zealand New Zealand Sources: adapted from ref. 14.
2
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Policy forum of states in the USA and Australia, medical practitioners advise patients that they are no longer fit to drive; patients then have the responsibility to inform the Driver Licensing Authority (DLA).1 In some jurisdictions,i it is mandatory for medical practitioners to report unfit drivers to the DLA,10 yet they are generally reluctant to do so owing to the negative effects this has on the doctor–patient relationship and adverse medical outcomes.23 Likewise, informing drivers of their unfitness to drive may reduce their willingness to seek healthcare.24 However, if a choice is to be made between relying on medical practitioners and leaving the decision to the patient or carer, medical practitioners are to be preferred. Drivers tend to overestimate their driving performances.25 This overconfidence may be exacerbated in drivers with dementia due to impairment in their insight and judgement.26 Similarly, caregivers may overestimate or underestimate their loved ones’ capacities as they may rely on them for transportation, or fear they will become responsible for chauffeuring them following license revocation.27
IMPACTS OF DRIVING CESSATION A prohibition on driving has numerous and profound impacts on individuals with dementia and their families. As noted above, these may precede license revocation, as individuals avoid seeking medical attention, presumably for fear of losing their licence. 24 Driving cessation may lead to significant isolation and increased prevalence of depressive symptoms,28 and loss of independence, identity and self-esteem.24 It may limit access to family, friends, health and community services and local businesses.9 It places a significant burden on caregivers,29 and is an independent risk factor for transition into residential aged care (nursing homes).30 Although individuals residing in urban areas have access to a greater availability of public transport, primary care and specialist health providers, they may perceive public transport in some regions as inadequate28 as stops and stations may be too distant from where they are or wish to go, schedules may be inconvenient, travel routes limited and services infrequent.31 Consequently, those who must cease driving may become reliant on family and friends to meet their transport needs.28
i
South Australia, Northern territory.
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LIVING IN RURAL AREAS AND RISK OF DRIVERS People with dementia who live in rural areas are likely to experience an added set of challenges.32 These include lower incomes, poorer living conditions, social isolation, lack of access to services, amenities and material resources, as well as social and economic losses linked to rural–urban migration and greater exposure to occupational hazards and adverse environmental events.32 33 In Australia, living in a rural or remote community is associated with higher mortality, lower life expectancy and greater use of hospital emergency departments as a source of primary care.34 In the USA, UK and Australia, older adults are over-represented in rural areas,31–33 yet there is a dearth of research investigating the impact of driving cessation on this population,35 particularly those with dementia. Following revocation of their licence, as noted, drivers with dementia in urban and suburban areas often rely on caregivers for transportation. The losses associated with driving cessation are likely to be magnified in rural areas, insofar as reliance on cars is greater as the trips required to fulfil most ordinary needs are generally longer, and availability of alternative means of transportation is limited.24 Therefore, driving cessation by older drivers in rural communities is likely to result in greater loss of healthcare access, and magnifies social isolation and the burden on carers than in cities. On average, rural drivers travel larger distances, which has consistently been associated with lower crash rates per unit distance travelled.18 In fact, older drivers who drive long distances are thought to be safer than other age groups.19 Rural centres have a lower car and pedestrian density and less traffic complexity3; thus, it is likely that rural drivers with early dementia have a reduced risk of motor vehicle collisions relative to their urban counterparts.
ACCEPTING A CERTAIN LEVEL OF RISK As the cost of driving cessation is greater in rural than in urban areas, and, on the assumption that the risk of crashing may be less, it is suggested that licensing authorities should permit a greater degree of cognitive impairment when assessing fitness to drive among drivers in the early stages of dementia in rural centres. An individualised approach might take into account the risks and benefits of ‘premature’ driving cessation on the individual driver and as a family member. The decision-making process would consider the individual in their
physical and social context.24 Ideally, this requires a case management team approach involving members from disciplines, including medicine, social work, occupational therapy and family members. However, the limited availability of suitably trained professionals in rural regions in many OECD countries is itself a serious problem.31–33 Consideration must also be given to the benefits of training programmes aiming at improving cognitive abilities, which may produce enduring improvements in a number of functional skills, including driving.36 Unlike cognitively intact older drivers who reduce the complexity of their journeys or cease to drive,37 drivers with dementia may have impaired insight and ability to make such adjustments and/ or to comply with restrictions. Therefore, frequent reassessment of function in the multiple domains required for safe driving is crucial to ensure driving remains at an adequate level of safety. The transition period may also be smoother if patients are engaged early in self-assessment, discussing modifying driving behaviours and when to cease driving.1 The proposal that rural drivers in the early stages of dementia be allowed to drive with a greater level of cognitive impairment than those in urban centres is controversial. What is being proposed is a riskmanagement approach that accepts a degree of risk in exchange for enhanced benefits for the individual and their family. Risk management is a critical, ubiquitous and highly complex endeavour.38 Many decisions, including all ‘fitness-to-drive’ assessments involve defining what represents an acceptable risk for the individual and society. Setting legal blood alcohol levels illustrates this trade-off. Alcohol consumption is a major burden of morbidity and mortality in middle-income and high-income countries.38 Yet most countries place the threshold of blood alcohol levels for driving at 50 or even 80 mg/dL rather than zero, despite the fact that some driving functions become impaired prior to reaching the legal limit.39 Society accepts a level of risk in order to preserve for individuals and those who depend on them the convenient option of driving. What constitutes an acceptable risk? In the case of alcohol consumption, young and commercial drivers are subjected to more stringent requirements because of the higher risk to self and others. When the risk is perceived as acceptable, society is more lenient, for example, in East Germany, following the reunification, the blood alcohol limit was raised from 0 to 80 mg/dL.40 If research establishes the risk 3
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Policy forum posed by drivers with early dementia is lesser in rural than in urban areas, the degree of cognitive impairment that society is prepared to tolerate among those drivers could shift to reflect this. Other medical disorders such as diabetes mellitus can impair the ability to drive, yet akin to dementia, they are not alone sufficient to warrant license revocation.41 Individuals with these diagnoses residing in rural areas could, therefore, also benefit from these recommendations.
PRACTICAL IMPLICATIONS FOR CURRENT LICENSING DECISION-MAKING Validated tools to determine the level of risk posed by drivers in the early stages of dementia to themselves and others do not exist.20 Current guidelines and interventions used to inform decisions made by clinicians about the risks of drivers with dementia are fraught with uncertainty, and it is still not known whether driving assessment of individuals with dementia prevents crashes or fatalities.20 An important consideration to adapting policies for rural drivers is the potential consequences of a collision involving a driver with early dementia who may not have, otherwise, been allowed to drive in urban areas. Assessing someone as being fit to drive does not guarantee that they will not be involved in a collision. It simply recognises that they pose an acceptable risk. Should a crash occur, questions may arise regarding the liability of the driver, medical practitioner and licensing authority. Decisions about fitness to drive in an individual with early dementia will inevitably be subject to intense legal scrutiny. This places a responsibility on clinicians to ensure their decision-making pathway is meticulously documented, wholly explicable and as far as possible, evidence-based. The current Australian guidelines on assessing fitness to drive10 refer to ‘the nature of the driving task’, ‘general functionality’ and clinical judgement as relevant considerations, which allows for a degree of latitude in the decision-making process. However, this discretion must be exercised very carefully, and decisions allowing drivers with a diagnosis of early dementia to continue to drive need to be well documented.1 The determination of levels of risk should incorporate an assessment of behavioural adaptations to the driving task and compensatory and optimisation strategies.20 Future tools may include an interviewbased assessment, taking into account crash history, family concerns, clinical condition and cognitive function, all of which have a 4
predictive value for crash risk that could inform the decision to proceed to formal road testing.42 Finally, frequent reassessments, monitoring driving performance and compliance with licensing conditions, as well as the ability to reverse licensing decisions should certain events (such as a minor crash) occur, are crucial to ensure driving remains safe. This is an inevitable trade-off when seeking to maintain mobility in a group of drivers with any progressive condition. This approach removes the disadvantage to rural drivers with dementia on the basis that they may have a reduced crash risk compared with urban drivers, yet comes at a necessary cost.
Provenance and peer review Not commissioned; externally peer reviewed. To cite Ferrah N, Obieta A, Ibrahim JE, et al. Inj Prev Published Online First: [ please include Day Month Year] doi:10.1136/injuryprev-2015-041601 Received 9 March 2015 Revised 14 May 2015 Accepted 26 May 2015 Inj Prev 2015;0:1–5. doi:10.1136/injuryprev-2015-041601
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3
CONCLUSION Road safety is an important component of a healthy community, and identifying drivers who pose an unacceptably high risk for crashes is a core responsibility of licensing authorities.21 In the absence of clear evidence to distinguish safe and unsafe drivers with dementia, the responsibility to make this distinction falls upon the treating doctor. 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 well-being of older people with dementia is not undermined by overly risk-averse policies or practices. Insofar as is possible, decisions should be evidencebased and not discriminate simply because of the presence of old age or disease. Notwithstanding the legal and practical aspects of enabling drivers with dementia in rural regions to continue to drive safely for as long as possible, the key is to devise better guidance and tools to assess the risk for these drivers. This is certainly preferable to the current status quo, where rural drivers fail to seek medical attention for fear of losing their license, and therefore, continue to drive at levels of risks that may be unacceptably high. Contributors JEI is the senior author and contributed to the conception and development of the ideas, drafting and critical revision of article draft and final approval. NF and AO are joint first authors as both contributed to conception, development, drafting and critical revision of the article draft and final approval. MY contributed to the conception, critical revision of the article draft and final approval. MO and BL contributed to critical revision of the article draft and final approval. Funding Support for the contribution of NF was provided by Department of Forensic Medicine, Monash University, Victoria, Australia. Competing interests None declared.
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Inequity in health: older rural driving and dementia Noha Ferrah, Alfredo Obieta, Joseph Elias Ibrahim, Morris Odell, Mark Yates and Bebe Loff Inj Prev published online June 19, 2015
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