ADI 2013 Taipei – Dementia and the impact of not driving

no-drivingI promised someone I would post the speeches I gave in Taipei… here is the presentation on driving. Glenn Rees, the CEO of Alzheimer’s Australia disagrees with me, and probably many others will disagree with me, but interestingly, the people with dementia in the audience who listened to my presentation, all agreed with me.

Dementia and the impact of not driving

Kate Swaffer © 19 April 2013, ADI Taipei

This contentious topic affecting people with dementia is discussed candidly in this presentation.

Driving is a powerful symbol of competence and independence, and is a routine part of adult life. As a person living with a diagnosis of dementia, I have a contentious view about driving and dementia.

Let me start by defining dementia. ‘Dementia affects thinking, behaviour and the ability to perform everyday tasks. Brain function is affected enough to interfere with the person’s normal social or working life[i].’ It can be seen as the gradual deterioration of functioning, such as thinking, concentration, memory, and judgment, which affects a person’s ability to perform normal daily activities. The Mayo Clinic[ii] says; ‘Memory loss generally occurs in dementia, but memory loss alone doesn’t mean you have dementia. Dementia indicates problems with at least two brain functions, such as memory loss and impaired judgment or language.’

Driving is a risky business.

Driving demands focused concentration, quick reaction times, good judgement, and efficient problem solving skills, as well as alertness and perception. At the core of this discussion, are the safety of the driver, and the safety of others. The majority of us commenced driving aged 16 and not until we achieve older age, are we ever re-assessed for safety or fitness to drive, without a known health issue.  We do not have to undertake a single written test, or practical skills test, or a defensive driving course at any time after our license is granted.

Whilst driving a motor vehicle is not as complex as flying a plane, this does seem unsafe. With a pilot’s license[iii], the pilot has to have a bi-annual flight review/test, and full medical examinations, which escalate after the age of 40. It includes eyesight, hearing, urine checks for diabetes, and ECG; they must also be done if they have not flown in the previous three months, done at least three take-offs circuits and landings, before taking any passengers up. On the other hand, we are legally able to get a driver’s license at age 16, which we renew by paying money and a new photo. We are then considered safe to drive until our health assessments start at aged 70.

Aged 50 and with a diagnosis of younger onset FTD, I had my driver’s license revoked after failing a practical assessment. My neurologist thought I would pass. I thought I would probably pass. I failed, with a very low score of 35%, a shock to him, and an even greater shock to me.

It has impacted my independence and self-esteem, and of course, my ability to get around. It is one of the most emotionally debilitating aspects of dementia. The emotional and financial impact of surrendering or having your driver’s license revoked is significant, and many of the issues are not obvious, especially to others. The toll of having my driver’s license revoked includes the following;

  • Increased loss and grief – it feels like a death
  •  Loss of independence
  •  Loss of control
  •  Loss of independent ‘mobility’
  • Increased loss of privacy
  • Increased lowering of self esteem and self worth – feelings of incompetence
  • Increased social inequality
  • Increased stigma
  • Increased isolation
  • Increased loneliness
  • Guilt – feeling like a burden – leads to sadness
  • Unable to be self-sufficient
  • Tension and anxiety relying on others
  • Reduced family income; loss of work hours for partner to provide transport
  • Buses and taxis can be too difficult for PWD to negotiate
  • Sense of well being significantly impaired

We all know to drive under the influence of alcohol and mind altering illicit drugs is illegal. During my ‘good’ moments, I am probably safe to drive, but the issue is, I cannot predict when this will change, and when the symptoms of dementia will be in full flight. In this way it is similar to being under the influence of alcohol, but with no warning.

Since relying on others for transport, I have come to realise many people still licensed to drive are less able to drive than I was! When my father in law who had Lewy Body dementia was unsafe driving, it took us 18 months to get his doctor to take it seriously, and a threat of advising the insurance company if he had an accident that the doctor should be held accountable, for him to take any notice. Dad was driving around roundabouts the wrong way, stopping suddenly on a highway, in very unsafe places, driving on the wrong wide of the road (yes, sometimes with grandchildren in the car), and having numerous small accidents, but no amount of suggesting his license be taken away, or he be re-assessed made any difference. The doctor was protective of him, and said many times he did not want to take away his independence. Dad always told the doctor he felt safe driving! In a study, Dementia and Driving, it was reported, ‘… because of the emotional nature of the topic of driving, many physicians are reluctant to broach the participant with their patients.’

I have anecdotal evidence of the test given to many people with younger onset dementia being a simple drive around the block, because they look young, fit and healthy. I also have a significant amount of anecdotal evidence of drivers who are creative with the law, and their self assessment, who say to me they know they are unsafe, but rely on looking fit and healthy, and saying the right thing to their doctor. I know of older couples who support each other through unsafe driving, for example, one manages the gearstick because the driver cannot remember how to. They both report to their doctor the driver is safe.

Currently in Australia, a diagnosis of dementia is not sufficient reason for the revoking of a person’s driver’s license, and cognitive and physical abilities are not the only markers of safe driving, and Professor Kaaren Anstey[iv] in her Model of factors enabling safe driving behaviour says the following features are required for safe driving, including for people with a diagnosis of dementia: Driving behaviour, capacity to drive safely, self-monitoring and beliefs about driving capacity, cognition, vision and physical functioning.

I would argue against this, and suggest a diagnosis of dementia impacts safe driving, because our ability to accurately (or honestly) self monitor, our beliefs about our driving capacity and at least two markers, e.g. cognition, concentration or judgement, have been clinically identified. They have to be, for us to have a confirmed diagnosis of dementia!

It is not our human right to drive.

This is a major societal challenge; there are limited resources for testing drivers for safety, and the variances in laws and the ways in which people with dementia are tested for safety between states and territories is high. The cost of assessing fitness to drive is high, and borne entirely by the person with dementia; the required numbers of appropriately trained assessors are not yet available. The variations in states make it unsafe, as drivers are not limited by borders.

The Survey of Disability, Ageing and Carers (SDAC)[v], reported that 84% of people with dementia had a profound level of limitation in core activities, while an additional 9% had a severe level of limitation. As a person with a diagnosis of dementia, this seems at odds with the advocacy of our rights to continue to drive, even with a conditional license, and there is a growing body of evidence that driving performance decreases even with mild cognitive impairment in AD.

The greatest issues for me personally are the burden I feel to others and the guilt which has turned into sadness for not being able to transport children, elderly parents, or meeting up with friends. And I do very much miss the spontaneity of being in control of my own transport. However, I would still argue, based on the definition of dementia, people with dementia are simply not safe to drive a vehicle averaging a weight of 1.5 tonnes, with a speed capability of 100+ kms per hour, under any circumstance.

See my slides; ADI Taipei_DEMENTIA AND THE IMPACT OF NOT DRIVING_19 April 2013_Kate Swaffer


[i] Alzheimer’s Australia, 2013, What is dementia?, http://www.fightdementia.org.au/understanding-dementia/what-is-dementia.aspx.

[ii] Mayo Clinic, 2013, Dementia: Definition, http://www.mayoclinic.com/health/dementia/DS01131.

[iii] Civil Aviation Safety Authority, 2013, Pilot’s exams and licenses, http://www.casa.gov.au/scripts/nc.dll?WCMS:STANDARD::pc=PC_90004

[iv] Anstey, K, Wood, J, Lord, S et al 2005, ‘Cognitive, sensory and physical factors enabling driving safety in older adults.’, Clinical Psychology Review, vol. 25, no. 1, pp. 45-65.

[v] ABS, 2010, in Australian Institute of Health and Welfare 2012, Dementia in Australia. Cat. no. AGE 70. Canberra: AIHW.

13 thoughts on “ADI 2013 Taipei – Dementia and the impact of not driving

  1. Reblogged this on Forget-Me-Not and commented:
    This is something that I think may well be happening in the very near future for Steve. He will struggle immensely with not being able to drive, and go fishing. I will need lots of strength and support when this time comes.

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  4. I cannot imagine life without my freedom to drive. I can so relate to your feelings, as best I can. I have never been a big bus person, primarily because I am way out in the country where a car is necessary….I don’t even know how to be encouraging on this one Kate. Dementia is cruel as it slowly steals your life away. It’s why I tell everybody around me to take zeolite everyday and get the heavy metals out to try and avoid this disease. We know what aluminum does to the brain and chemtrails are pounding us everyday!!! We have to keep this stuff out of our systems as best we can…..Keep the faith my friend, I know it is tough going. Love and hugs….VK

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    • Dementia, and many other chronic or terminal illnesses are cruel, and the way we help ourselves (and the planet) is perhaps our biggest test. I am well and truly over the impact of not driving (thankfully) but continue to write on what I see as the reality for most people who have to give up their licenses, for any reason. With love and hope, and thanks.

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  5. ……Dear Kate……I travel everywhere by bus, train and taxi,…and I love it…..I now see driving as a waste of my precious time,as I am not young anymore, I value my life a lot more…….I don’t own a car, I don’t want one.!!……….and you know what ?..if someone had said to me 10 years ago, that one day I would lose my independence and not be driving anymore; I would have said “rubbish, I will always drive”….well, I do not miss driving and I feel no loss…..it is certainly something this A/D sufferer can do without…

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    • Dear Tony, perhaps you could write me a guest blog about the positives??? Please. You’d be the first person I have heard of who feels this way, but maybe it is just a mindset, and a blog with another viewpoint would be beneficial. Just a thought.

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  6. Kate – could we post a link to this fantasic article on our blog? I’d love to see this discussed widely.
    I agree that driving (and the freedom it brings) make this quite an emotional topic.
    I’d like to say, based on the evidence you provide, that I agree. But; if someone tried to take away MY licence I suspect I would feel differently.
    Food for thought.

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    • Hello Esther, of course you can post a link to this blog. It is easy to see how you can agree with my viewpoint, yet realise how hard it is for most people to have their license taken away!!

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      • …..Dear Kate……I really think I have done too much driving in/over my lifetime, now, I don’t have to worry about concentrating on driving anymore, I don’t have the care or expense of a vehicle, and I don’t have to put up with bad drivers, I was getting very irritable as a driver……..I have been through that part of my life and now I move on, as “nothing stays the same forever”…………the only regret I have about life is one has to give up so much…..your job sometimes, your partner dies, your pet dies and so on and so on…..but I have no real complaints……..not even about my Dementia……
        ……and I forgot to add that I have lived in a large Matilda Motorhome since 2004….to make life a little easier for me…….and I have never , ever had one day of regret…………..so maybe I accept change better than most……??…..my strict, brutal, catholic upbringing maybe..??….

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