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...

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The dementia-friendly shopping experience

One of the most extraordinary comments I heard in the wake of Alzheimer's Society launching their guide to becoming a dementia-friendly retailer was from a shopkeeper who said: "Why on earth do I need to make my shop dementia-friendly? Dementia sufferers shouldn't be going shopping - they might forget to pay."

I won't print my response. And by way of clarification, the quote is reproduced as the person said it, and perhaps the lack of appropriate language is, in this instance, illustrative of a particularly backward attitude.

Apart from proving we still have a long way to go to tackle stigma, discrimination and negativity towards people with dementia, this comment also shows EXACTLY why we need to make shopping easier for people with dementia. Individuals living with dementia have as much right to get out and about in their communities as anyone else, and fellow citizens who suggest otherwise need to be challenged about their viewpoint.

It always strikes me as contradictory that there is a desire to close down a person's life as they age, and yet their earliest memories are likely to be of the world being opened up to them, and them being encouraged to explore, develop and learn. Instinct teaches us that this is the route to survival, and parents are actively encouraged to ensure their children take every opportunity to familiarise themselves with, and test, the world around them.

It therefore makes no sense for our society to try and strip away this survival instinct, and I wholeheartedly welcome any move that might make local communities more accessible and less intimidating for people with dementia. For many people, shopping is an activity that they associate with discovering new things, and the fun and happiness of finding what you are looking for – indeed, nearly 80% of people with dementia who were surveyed by Alzheimer’s Society listed shopping as their favourite activity (although 63% didn’t think shops were doing enough to help people with dementia) - so it's vital that we make the environments that deliver these experiences suitable for everyone.

For me, there is a really important argument here about dementia-friendly communities benefiting all of us. I have questioned the wisdom of dementia-friendly checkouts before, arguing the need for all checkouts to automatically be ‘dementia-friendly’, because the elements that go into making a dementia-friendly checkout are potentially something that many people could benefit from.

Maybe a better shopping experience might even tempt me back to the shops. I have developed a personal dislike of going shopping, probably because trying to accomplish this with a baby and a pram isn't easy. The difficulties I've encountered have certainly made me think about how a person with dementia might cope, particularly if they happen to be in a wheelchair. Signage and availability of lifts and toilets is often poor, and the lack of these can cut a shopping trip frustratingly short.

Then there is the classic example of staff who don't know the products in their store (something I fell victim to in a major garden centre chain recently), and as Ann Johnson points out in this film, the highly confusing example of shops moving their products around. I know why they do it, they want customers to spend more time trying to find what they need and in the process see other products, but it's so unhelpful if you are expecting the items you need to be in a certain place and they aren't there.

As a result of all my gripes and grumbles I'm mostly sworn off going to the shops now, preferring online options. That does mean more trips to the post office with parcels to return, however, highlighting the need for local services like a post office and for the staff within those services to understand the needs of all of the people in their community.

Most people with dementia tell me that counting money is by far their biggest challenge, and this certainly rings true with what Alzheimer's Society are reporting. Then there is the difficulty of selecting the goods you really want. Prior to my dad's diagnosis he would often shop in a very random way, bringing home items from the supermarket that didn't correlate into meals he would want to eat, and going to other shops and auctions, spending a lot of money on things that weren't worth what he was paying for them and that he didn't need.

In hindsight, I suspect that this was often due to going around shops and picking up things that looked appealing, or that seemed familiar to him on that day. He could easily have been seen as a 'soft target’ for unscrupulous people who just wanted to sell him something, regardless of whether he actually needed it or not.

So what does a good example of supporting a person with dementia as they go shopping really look like? ‘Family’ parking spaces (rather than just ‘parent and child’ parking), good signage and easy-to-find and use facilities (like toilets), good lighting and not bombarding the senses with loud music or announcements, appropriate flooring and careful use of mirrors, good availability and labelling of products, staff training in helping customers who are living with dementia, different payment options and support with counting money (with staff being completely honest and trustworthy in that process), giving time, and being kind and attentive - perhaps offering to accompany a person around a large store like a supermarket so that they can find what they are looking for.

It's also about recognising a person's right to a shopping experience that makes sense to them (which means each individual, not a one-size-fits-all) and tailoring the amount of help/support offered. It's about forming relationships with regular customers, something small independent shops are often great at but bigger stores with higher staff turnovers can struggle with. It's about not being judgmental, and from a purely business perspective, understanding that whoever your customer is, and whatever physical, mental or cognitive challenges they have, their money is as good as anyone else's in your till – the ‘business' case for being ‘dementia-friendly’ is clear from the Alzheimer’s Society retail guide.

Ultimately, a person with dementia may not remember you, but they will remember how you made them feel. That, for me, really sums up how you make a shopping experience for a person with dementia the stress-free, enjoyable time it should be.

Until next time...

You can follow me on Twitter: @bethyb1886

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