What is your biggest fear about motorhoming as you get older? Getting tired or lost on long drives? Becoming more nervous on the ever increasingly busy roads? What about dementia?
We’ve all seen the witty rhyming sticker ‘Adventure Before Dementia’, inspiring us to travel before it’s too late. But what about adventure with dementia?
This article is written by Hobo Trudi who has 25 years of working with the elderly and coaching those who care for them. She trained with the Norfolk and Suffolk Dementia Alliance as a Dementia Care Coach and worked as Deputy Manager of a care home.
With more and more people taking up motorhoming, many of whom are in their 60s, we felt it was time to address the issue of travelling with dementia.
On this page we’ll look at some coping strategies that, once implemented, can go a long way to ensure that a diagnosis of dementia needn’t be the end of your motorhome travels. With the right help and guidance you really can ‘adventure with dementia’ for some time to come.
Let’s find out how…
- What exactly is dementia?
- What are the first signs of dementia?
- Motorhoming if your partner has dementia
- The importance of routine and consistency
- Planning a road trip with dementia
- Making dementia the new normal
- Dementia and challenging behaviour
- The need for kindness and self-compassion
- Accessing resources for help with dementia
What exactly is dementia?
Dementia is “a syndrome in which there is deterioration in memory, thinking, behaviour and the ability to perform everyday activities.” (1) In effect, it is brain damage of one type or another (with each type causing a variety of different symptoms).
Statistics tell us that some form of dementia will affect between 5 to 8% of us from the age of 60. This figure rises to 50% once we reach our mid 80s.
But there’s one thing the statistics don’t track so closely: the main component of any disorder is the response of the individual themselves and the help they get.
This is one of the things I want to emphasise in this article…dementia needn’t be the end of the road for a long time yet!
In my quarter of a century of working with the elderly, I have seen many ‘elders of the tribe’ living happy, contented lives with dementia. Yes, there are changes, challenges, compromises, and restrictions…but we must never forget the ability of us humans to adapt.
Optimism must go with us…
What are the first signs of dementia?
When you hear remarks such as, “Everyone with dementia does X, Y or Z” – refuse to believe it. Seriously – if you’ve met one person with dementia, you’ve met one person with dementia.
Maybe you or your partner has known for some time that “something” is wrong. But what are the first clues that point toward the possibility of dementia?
These are the things to out look for…
- Poor short-term memory
- A sense of confusion
- Everyday events may feel slightly ‘strange’ and normality may suddenly not make any sense
- Forgetfulness about the use of everyday items
If you’ve seen these ‘early signs’ in your partner you may be wondering how best to respond.
Here’s my first tip…
In many cases, ‘entering your partner’s world’ can really help (since ours can seem a little weird to them right now!) What this means is that if your partner insists that they bought cornflakes, then ok, they did! There’s no need to argue the point.
But be careful not to mistakenly validate fears…
The monster under the sofa bed becomes real if you pretend to throw him out! (Often the “monster” turns out to be nothing more than a bundle of dirty linen).
The key is to acknowledge your partner’s fear but try a distraction technique or reassure them that there’s nothing to worry about.
However, never dismiss their worries without properly checking. I have witnessed many occasions where the person with dementia was actually correct!
With these strange and worrying first signs it’s obvious to wonder if it’s still possible to travel with dementia, so let’s find out…
Motorhoming if your partner has dementia
Perhaps getting a diagnosis of dementia and finding out about the help you can get has come as a relief. You might now be raring to go on your next motorhome adventure!
But the question naturally arises: ‘Can we still adventure with dementia? Can we still go on road trips and travel like we used to?’
If your partner is showing signs of dementia or has, indeed, been given a diagnosis, you’ll know better than anyone how to answer these questions. You will know what scares them, what angers them….and what makes them happy.
Of course, a diagnosis could initially result in feelings of fear, disappointment, anger, resignation and depression. Your partner may not want to go out in the motorhome if it compromises their need to feel safe and secure.
They may need time to grieve for the future they thought they had. As do you.
This will bring into question other emotional needs, such as the need for meaning and purpose in life. And it will also bring into sharp focus the issue of mortality, something we all have to face eventually.
RELATED CONTENT: the importance of meeting emotional needs
But an early diagnosis really does give you the chance to prepare for and delay the symptoms of dementia and allow a period of adjustment for you both. The thing to hold forefront of your mind is this: a diagnosis of dementia does not mean the end of a meaningful and useful life.
So, let’s look at some of the things you can do to help you continue with your travels…
The importance of routine and consistency
If you’ve been motorhoming for some time why stop now? Retaining a sense of normality in your life is vital. If motorhoming is something you’ve done for years keep going for as long as you can!
Let’s be honest: travelling in a motorhome with a partner with dementia will be different – and could occasionally be difficult – but not necessarily impossible.
This is a really important point….
A patchy memory is aided by routine. So visit the places you’ve always loved, even if that’s just a few miles up the road.
On longer journeys, even if you wake up in a different place each morning, the routine inside the motorhome can be the same.
To maintain sequential memory – the memory which allows you to complete a linked series of tasks such as making a pot of tea – keep mugs, cutlery, tea bags etc. in their allocated place. Label the outside of the cupboard doors if it helps.
This was highlighted poignantly in the BBC drama Elizabeth is Missing.
Be patient and allow your partner to ask the same question a few times because, to them, each time will be the first time! (They’ve forgotten that they asked you the same question just a moment ago). The key thing is to remain consistent in your response, otherwise it could add to their confusion.
Planning a road trip with dementia
Depending on the severity of the symptoms, it might not be possible to travel hundreds of miles like you used to. Maybe you will not be able to go too far from home due to the need to get back quickly if necessary. Maybe you’ll need to stay in countries – or even counties – where the language and accent is familiar.
A long journey could trigger sensory disturbances, such as misinterpreting visual or auditory cues and signals. (A long journey in our van always triggers Gav’s tinnitus). A disorderly campsite might trigger confusion.
So, as an alternative, limit travel to day trips and try adult-only campsites (though you will be humbled by how children will accept anyone for who they are, if given an explanation).
And if continence and mobility is an issue, the motorhome’s facilities may not be big enough. This is where an understanding camp site with disabled facilities might be a better option.
Indeed, as the condition develops, you may need to limit your travel so that week-long road trips become ‘day drives’ instead. This can be just as rewarding.
Indeed, sometimes we’re happy enough to visit places local to us in Suffolk where the motorhome is used for nothing more than a meal out and some relaxation before returning home at night to the bricks and mortar.
RELATED CONTENT: Top 10 Tips and Ideas for Planning a Road Trip
Making dementia the new normal
It’s going to be different from now on. If your partner has dementia you’re going to have to think for the two of you.
So, before you hit the road – whether staying local or going further afield – sit down in the motorhome and look around for possible issues…
A motorhome is a confined space for anyone with poor mobility (which can be one of the symptoms of dementia). Getting someone back on their feet after a fall could present problems – although in a motorhome there is always nearby furniture to assist you.
Getting in and out of the van itself may be difficult. Can you fit handles and low depth steps or a ramp? Speak to disabled stockists.
And when you’re on the road, don’t be embarrassed to explain – if you need to – that your passenger has dementia. People genuinely understand these days…and if they don’t, move on!
A campsite owner might be prepared to make sure your partner doesn’t walk off site when you are showering…or they may open the family or disabled section for you so you and your partner can wash safely together. If you wish, tell the site owner your names so that they can reassure or redirect your partner with a friendly voice.
And consider returning to the same campsites so the owners remember you both. Again, routine is important.
Dementia and challenging behaviour
Sometimes, the person with dementia can be awkwardly honest with their opinions or feelings. Often, as dementia develops, the conscience that keeps us within social rules can gradually diminish, so an explanation may help if a situation is embarrassing.
This isn’t about apologising for your partner, but rather explaining.
See, one of the biggest worries about dementia as it progresses is “challenging behaviour”.
Try to understand the problem from their perspective…
- What could be triggering their distress or discomfort?
- Has something changed?
- What emotional needs are going unmet?
- Are you making all the decisions without consulting your partner anymore (so that they feel a loss of control and autonomy)?
- Is your partner feeling ignored or being treated like a child?
- Are they unable to hear what is being said?
- Have they lost a sense of dignity or is their dignity being disregarded?
These are all things that can irritate anyone…not just someone with dementia!
In the training I’ve given over the years, the attendees soon realise that so called “challenging behaviour” is actually something they display themselves on a regular basis!
Sometimes such “challenging behaviour” simply means that the person exhibiting the behaviour is putting aside a lifetime of imposed societal restrictions and etiquettes. Actions and reactions may become childlike but this can also be accompanied by other childlike traits such as enthusiasm, curiosity, and fearlessness.
What a wonderful world to live in! Enjoy such moments with them!
Except ye be converted, and become as little children, ye shall not enter into the kingdom of heaven.Matthew’s Gospel, Chapter 18: verses 1-10 (King James Bible)
Accept that some aspects of life are going to change. Be prepared to compromise and to exit gracefully from an argument. But also be prepared to lose some of your own hang-ups!
The need for kindness and self-compassion
Caring for someone with dementia can be emotionally and physically draining; this is someone you love, someone you have possibly spent your life with. They are changing and your relationship is changing.
It is a normal reaction to feel that this is not fair – because it isn’t fair! You may resent that you are having to alter your future plans due to the dementia. But it is what it is. You’ll find yourself saying that a lot as you struggle with acceptance.
When emotions become aroused – and they will – it’s a good idea to find a way to safely contain them or distract yourself, all the while remembering to breathe! This is where meditation and mindfulness can play an important role in managing your own emotions.
And never be ashamed to ask for help!
If your compassion does not include yourself it is incompleteThe Buddha
Becoming self-compassionate means that you don’t neglect your own needs. Do what you can to help yourself deal with the challenges as they arise.
But often, we have to reach for help beyond ourselves…
Accessing resources for help with dementia
When it comes to your continuing motorhome adventures, always make sure you travel with all the phone numbers of friends and family who would help in an emergency.
And perhaps you could travel with a group or family so that you have support. Indeed, there may be other motorhomers in a similar situation who will happily share their ideas with you: ask how they cope.
Search the motorhome forums online. They can give you both the hope and strength to travel so that motorhoming can remain an enjoyable and shared way of life for some time to come.
And finally, use the charities and professionals (listed below) because their advice has been gained from years of experience. They will also offer a listening, non-judgemental ear.
List of resources:
Dementia UK – for more on understanding dementia and support available
Alzheimer’s Society – a wealth of help here, with stories and poetry
Dementia Friends – learn more about dementia and help in your community
Alzheimer’s Research – the UK’s leading dementia research charity, dedicated to causes, diagnosis, prevention, treatment and cure.
Dementia Action – supporting the development of dementia friendly communities
Remember to check out our other van life health and wellbeing pages for info about brain boosting foods, the healing power of nature, and the importance of meeting emotional needs.
This page is NOT intended to give anything other than helpful tips.
If you are worried that you or your partner MAY be developing dementia, get along to a doctor. There are many other reasons for common symptoms. The list is endless – but constipation, infections, polypharmacy, poisoning, illnesses, sensory failures, stress (yes, stress), recreational drug use, intolerance to a prescribed drug, alcohol use – are common culprits and can have a devastating effect on the mind and body. Get a professional diagnosis.
(1) Definition from the World Health Organisation