Driving, dementia, and doing the right thing

Whenever dementia diagnosis is discussed, one of the major barriers that explains why people delay seeking a diagnosis is the fear of giving up driving.

It is understandable and something I can relate to. I live in a very rural part of England - not having a car and being able to drive would be severely isolating for me, but driving is about more than just freedom and the ability to shop, socialise and pursue hobbies and activities that you enjoy. It is also about a way of life.

For most people, passing their driving test is one of those significant life moments, a signal for a young person that they've gone from being a dependent child to an independent adult. Most people cherish this status, and if you've had your license for the majority of your life, being faced with losing it can be a bitter pill to swallow. Not only that, but it can make you feel very 'child' like again at a time when other changes in your life are leaving you with the sensation of being stripped of your adulthood.

There are a lot of misconceptions about driving and dementia. A diagnosis, in itself, doesn't necessary mean that you instantly stop driving. There are a myriad of medical complexities, everything from the type of dementia a person has and how it is affecting them (everyone is affected differently, even two people who have the same type of dementia may experience different symptoms), to how early the person has been diagnosed (they may have very mild symptoms, or their symptoms may be significantly advanced, or indeed anywhere in-between).

With the suggestion that medical science may be able to predict much earlier presentations of different types of dementia in the future, the chances are that changes in the brain that indicate very early forms of certain types of dementia could mean more people are diagnosed in the years to come at a time when they are still medically fit to drive.

And that is the key to the issue about driving. To my mind, it is a simple question about a person's fitness to drive. There are many different medical conditions that can make you unfit to drive, as well as different medications. The interactions between different conditions and medications are also important to understand. Dementia alone may not stop you driving immediately, particularly if you have been diagnosed quite early. It really depends on your individual circumstances.

As every UK driver knows, they have to inform DVLA (Driver and Vehicle Licensing Agency) of any medical conditions that may affect their ability to drive, and also inform their insurance company. If the person doesn't want to voluntarily surrender their license, there has to be a medical report compiled by their doctor to help the DVLA make their decision about that person's fitness to drive. The outcome will be that either the license will be revoked (you need to be retested in order to get a license again) or renewed for a fixed duration before another review.

At every stage, the compliance of the driver is preferable to make the process as seamless as possible, but what happens when the driver doesn't feel that there is any medical reason to contact the DVLA? They may be symptomatic but not diagnosed with dementia, or indeed may have received a diagnosis but be struggling to accept it.

This is a conundrum that many families face. Sometimes family members recognise the problems the person is having with their driving before the person does themselves. Even if the person is noticing issues like getting lost in otherwise familiar places, being unsure of how to operate a previously familiar car, or having 'near-misses' whilst on the road, they may just dismiss it, or try to hide their problems out of embarrassment or fear.

Families often find themselves in the position of arbiters on their loved one's ability to drive, caught between not wanting to report their loved one's declining driving skills but at the same time being worried for their relative's safety and the safety of others. If the person who is experiencing symptoms that are affecting their driving is also the main driver in a partnership, and either their partner only drives infrequently or not at all, losing their license could have significant implications for their partner/carer/family too.

It is, by any stretch of the imagination, an unpleasant situation to find yourself in. It can cause huge arguments in relationships and the wider family, can result in family members going behind their loved one's back to take steps to revoke their license or take their car away, and can cast a very long shadow that makes a person hostile towards seeking help if they have undiagnosed dementia symptoms.

Of course everyone is different - some people pragmatically face up to difficulties with driving and voluntarily give up their license before they might be formally required to do so. But even talking to people in memory clinics who've been diagnosed with a type of dementia, the topic of driving still brings up strong opinions.

In my dad's case, during the 10 years he lived with dementia prior to his diagnosis, he became an unsafe driver. He didn't recognise his shortcomings, however, and wanted to continue to drive. Everything came to a head when he demonstrated his intention to continue to drive by sending his car to the garage for some very expensive repairs that were needed to make the car roadworthy.

Not only could he not afford the repairs (but didn't realise he couldn't afford the repairs), had the car come home ready to drive he would have been a danger to himself and to other people on the roads. In the face of very dogmatic conversation (dad lost his reasoning skills very early on in his dementia), I had no choice but to have the car sent for scrap. Any other outcome was either going to result, at best, in debt, and at worst in an accident.

I didn't like having to take the action I did, nor did it make me particularly popular for a while, but I felt a strong responsibility not just to my dad but also to other road users. You could argue it was paternalistic of me, and I wouldn't disagree, but to this day I would defend the decision I took. My only regret is that dad didn't make the decision that had to be taken himself. It would have been infinitely preferable for all concerned if he had.

Sadly I will never know if the symptoms of dad's dementia prevented him making that decision, or if he would have always resisted any notion of giving up driving for any medical reason, not just vascular dementia. At the time it was another of those very confusing, isolating moments that you have as a family with a loved one who has undiagnosed dementia where you grapple with the dicey question of, 'What is the right thing to do?'

It's not a question I would wish on other families, and but for me, finding the answer was one that ultimately came down to the legalities of fitness to drive. It is illegal to drive a car when you are not medically fit to do so, and driving, whilst hugely important in the lives of so many people and something none of us necessarily 'want' to give up, isn't worth pursing if you cannot do it safely.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

Dementia’s emotional rollercoaster

Living with dementia is one of the toughest challenges any family can face. Emotions become raw and brutally exposed, and the constant question of, “Why did our loved one develop this?” is a harrowing, often daily, exercise in trying to understand that which cannot be understood.

Amongst the many families I have met going through their own unique dementia journey with a loved one, some common emotional themes have developed, five of which I am going to explore in this blog. Interestingly, given that many people feel dementia takes away the closeness they once had with their loved one, all of these emotions are common in the person with dementia too, so maybe we are not so far away from each other when it comes to the deepest feelings after all.

DENIAL

The early stages of dementia are, for many people, all about hoping that what they think is happening is not actually happening at all. They want it to be a figment of their imagination, an over-reaction to some erratic, worrying behaviour that they have experienced, a normal part of ageing, or a case of the person in question being far too educated, important or active to develop dementia.

The belief that this happens to ‘other’ people can become a huge obstacle in seeking help when someone is struggling with symptoms that are affecting their daily life, but it must be borne in mind that this disease is no respecter of background, education, career attainment or personal success. From the wealthiest, most influential people, to those who have struggled all of their lives to makes ends meet; dementia can strike anyone. There is no shame in it, and no reason to hide no matter how much pride you feel.

My father went 10 years without a diagnosis, but at a very early point when his symptoms became evident to a non-medical lady who clearly knew far more than we did, her view was that he was in the early stages of Alzheimer’s. Our reaction was something along the lines of, “What on earth is she talking about?” followed by, “She can’t possibly be right.”

LACK OF UNDERSTANDING

Denial often goes hand-in-hand with a lack of understanding about what exactly dementia is. When dad’s diagnosis finally arrived in many ways it joined up the dots, and everything that had happened in those previous 10 years suddenly had an explanation attached; except that we still did not really know what on earth dementia was.

At that point you then find yourself reading up and trying to understand, questioning the professionals charged with your loved one’s care, and almost secretly hoping that they are wrong and everything will go ‘back to normal’.

Of course that does not happen, your understanding slowly grows over the years, and your ability to spot the early signs of dementia in others (just like the lady who thought that dad had Alzheimer’s) becomes very finely tuned. A true grasp of dementia, its twists and turns, vagaries and anomalies, frustrations and yes, even joys, only comes with the time the journey with this disease takes.

FEAR

Families often put off getting a diagnosis out of fear for what dementia will mean for the future. Fear of the disease is one of the biggest obstacles in tackling it because it feeds stigma, prevents understanding, and leaves people feeling helpless and not in control; effectively it puts you in a vicious circle.

Confronting your fears by seeking a diagnosis is not easy. You may not even have a choice in the end – we didn’t. Dad’s diagnosis came by chance when he had been admitted to hospital after collapsing at home from a stroke. At the time our fears were for his physical condition; we were coping with the shock of finding him on the floor and the worry of whether he would get better.

After all that, in some ways a diagnosis was a relief but the fear does not automatically go, in fact it often gets a lot stronger. Once you realise that dementia is a journey you will be going on whether you feel prepared (you won’t) or not, fear can regularly creep into your everyday life. For me, however, as dad’s dementia progressed, fear of the disease was replaced by fear of the phone call to say that he was ill with a chest or bladder infection and needed urgent medical care.

A SENSE OF LOSS

This is one of the most common, reoccurring, and troubling emotions that families going through dementia with a loved one experience. You feel you are slowly losing the person you knew, you cannot communicate or do the things together that you used to, and you are effectively grieving for your loss whilst your loved one is still alive. It is all the more distressing when you confront the realisation that as dementia is a terminal illness you will, at some point, grieve all over again.

It has been said that in dementia the mind passes away long before the body does. It is a profound statement but one that does not take into account the power personalised, compassionate care can have in helping those living with dementia to express themselves and maintain the bonds that they have with their family. Even when you become accustomed to dementia, if indeed you ever do, I won’t pretend that dark days do not happen when you feel overwhelmed with sadness, grief-stricken and helpless, but care that enables your relative to feel reassured, loved and valued will bring many more happy days than sad ones.

GUILT

This is an emotion that so many families experience if the time ever comes when their relative needs to go into care. At this point families have often been struggling on at home, trying to care for their loved one, or a crisis point has occurred that means residential care is the only viable option.

Whether you have been caring for your loved one day in day out, or you have lived miles apart and been wracked with guilt that you have not been able to do more for them, moving someone so precious and loved by you into a communal establishment can feel life-changing. It can also seem like the final step in accepting that your relative is battling a disease that means that they need an extra level of care, and that this may well be their final home.

The guilt that you cannot care for them for whatever reason can be very troubling, and often goes side-by-side with massive concerns about whether you have done the right thing, and how your loved one will adjust and be cared for. As in all things related to dementia, however, I have always felt that the disease persecutes enough, without adding additional punishment on yourself. Never be hard on yourself or your nearest and dearest; you will need each other and all the strength you can muster in the weeks, months and years ahead, and crucially, your loved one with dementia will need everything you can give them too.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook