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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Getting technical

How many times have you forgotten your pin number or tried to work out what an abbreviation in a text message means? How often have you cursed technology for presenting you with what appears to be an insurmountable problem, declaring that we were all better off when we only had pens and paper?

Imagine then if you can only remember a life of pen and paper, and modern technology is an alien concept. For people with dementia, an abbreviation in a text message could remain utterly unfathomable permanently. Having to remember a pin number could end your ability to go out shopping with a card that in theory provides access to your money, but only if you can remember those magic digits.

As dementia progresses, telephone calls can become problematic because you need visual clues to be able to communicate to the best of your ability. Even trying to operate a TV remote can leave you frustrated and bewildered – so many channels, so much choice… maybe too much choice. The world can become an increasingly isolating and unfamiliar place when your mind no longer helps you to process information that the rest of us take for granted.

Many of these problems stem from living in a faceless society. We communicate less and less in person – if an email or text message will suffice it is often quicker and easier. We use numbers to keep our cards secure when once a simple signature would have been all that was needed to purchase goods. Many shops now expect you to serve yourself when you want to buy something. We are encouraged to bank online, but again this involves remembering the right answers to get through the security. Even making a phone call regarding a service can leave you wading through those dreaded selection menus, unsure of which button to press – if you can even recall what all the options were.

How do people with dementia cope? The answer is with great difficulty. If you are fortunate enough to have a loved one caring for you, much of the burden of running the affairs in your life (be they financial, social, or simple household matters) will, over time, fall to them, which in the case of financial affairs often means going through the complex processes of Power of Attorney (if you are able to facilitate this). That is not to say that you necessarily want to lose control over your life, just that the systems within our shops and services are not, at present, widely adapted to help people with dementia to remain in charge of their affairs.

Thankfully the Dementia Friendly Communities initiative is involving leading companies in trying to understand how they can modify their systems to help people with dementia. Let’s hope they can grasp the scale of these problems, the debilitating effect they can have on daily life, and find ways to modify how they run their businesses to help people with dementia to keep their independence for longer.

But what about the more basic problems like using the telephone and operating the TV? Making devices simpler is one solution, but ultimately someone with advancing dementia will often come to rely on those nearest and dearest to them to help with their communication and entertainment needs. Proof, if it were needed, that nothing can really beat human contact.

So can technology and dementia ever really be happy bedfellows? You might think that is unlikely, but as awareness of the needs of people with dementia grows, there are plenty of companies looking to innovate products that can provide real 21st century solutions that benefit rather than baffle people with dementia.

Of course they won’t work for everyone – after all the best dementia care is about focusing on the individual and what is right for them. It's also unlikely that one piece of technology in isolation will be useful for a person throughout their entire life with dementia. Nevertheless, I think my dad would have benefited from a little technology in his life, not least a device that could have alerted us when he collapsed at home, and prevented him being left on the floor all night. Equally, technology that could have provided the kind of support and peace of mind that might have kept him living in his own home for longer would have been a plus point.

So, sometimes technology can be a positive thing for people with dementia, and indeed sometimes it is actively embraced by those living with the disease. Take for example how some very inspiring people who are living with dementia are communicating their journey through blogs and social media. It always reminds me that for everyone I meet who tells me they don’t understand social media and "could never blog" there are some people, facing huge challenges with cognition, who find a way to break down those barriers and get their stories out there. For them, getting technical is a lifeline, and for us it means we can learn from the REAL experts in dementia.

Until next time...

You can follow me on Twitter: @bethyb1886

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Sense and simplicity

One of the many positive things to come out of the increase in dementia awareness is the focus on how we provide the best possible care for people living with dementia. The importance of training for everyone involved in dementia care has never been higher on the agenda, and there is a huge desire to equip people from all backgrounds with the skills and knowledge needed to enhance quality of life for everyone with dementia, but what does good dementia care training really involve?

So many people ask my advice on dementia care, not just from a personal standpoint but also from a professional and business point of view. My answer is always the same – keep it simple. I am not a fan of complex theories, extravagant ideas or novel concepts – everything I have ever seen work best for my father and numerous others living with dementia is simple, down-to-earth, logical care that focuses on the individual, their personality, passions and interests, keeping their past constantly in mind, living in their present, and giving them the best possible future.

Underpin that with strong bonds between the carer and the person with dementia, deliver that care with compassion, empathy, dignity and respect, and voilà – you have good dementia care. Nothing fancy, nothing ground-breaking, just the implementation of the obvious, or maybe it is only obvious to me because my father had dementia for so many years and during that time I saw some of the very best, and worst, dementia care.

Those who are living, or have lived, through a loved one’s dementia journey are often the best educators. We notice what others ignore, and having felt the whole range of emotions - and in my case seen dementia from the very beginning, through numerous stages and symptoms over many years to those final days of end-of-life care - you develop an acute sense of how to nurture someone through their dementia journey.

That feeling for dementia is what really needs to be communicated through modern-day dementia training – teaching the mechanical nuts and bolts of care is no longer enough. What does not need to happen, however, is for it to be packaged up in jargon. Carers do not need to be bombarded with new-fangled language to identify a simple aspect of good care. For example, at a recent event I spent the best part of half an hour listening to a very animated presentation on what amounted to continuity in care, where the people presenting the session managed to make the idea of having the same carer regularly looking after a resident that they had formed a bond with sound ground-breaking. Yet over 8 years ago, as my father was settling into his first nursing home, he developed a friendship with a particular carer who was then made his keyworker and remained as such until that carer left, just a few weeks before dad passed away. Not so much revolutionary as the simple application of observation and sense.

I sometimes wonder if that long-standing joke about common sense – that sense is in fact no longer common – actually has a lot of truth in its jest. I suspect that in this drive to be technological and futuristic many people feel that you can only successfully convey a message if you package it up to such an extent that you ask your audience to play a never ending game of pass the parcel. Where care is concerned, however, front-line staff simply do not have the time to unravel ideas – you need what you are being asked to do to be logical, natural and above all else, effective.

Caring for people with dementia can be a very rewarding job. When you understand how dementia can affect a person, why they do what they do and how you can make every interaction with them meaningful for both of you - whether you are passing their room, feeding them a meal, giving them a bath or playing a card game - work becomes pleasurable, the giving and receiving of care happens in an atmosphere of friendship and mutual trust, and a care home becomes a loving community of like-minded people all working towards common goals.

My advice to carers? I cannot stress enough the need to personalise everything that you do for a person with dementia, make it compassionate, and be dedicated in your application. Do this and you will not only serve the people who depend on you well, you will also have the satisfaction of knowing that you have wrapped up the life of someone vulnerable in a bespoke security blanket that brings with it warmth, protection and love.

It is not a one-way street, however. The best, most committed and caring staff can be worn down in hospitals, care homes or by care companies that do not appreciate the need to allow their staff to have the time to work effectively. Good care is never rushed care. Teamwork should involve everyone in looking after a person with dementia, from the person themselves and their family to every staff member. An inclusive care home, where everyone feels valued, whether they are a staff member, a person with dementia or a visitor, is a happy home. Finally, for any employer looking to give their staff the most effective training in dementia, remember those guiding principles of sense and simplicity. When both are commonplace everyone is nurtured and flourishes.

Until next time...

You can follow me on Twitter: @bethyb1886

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What makes a dementia friendly community?

When I last wrote about the UK’s dementia challenge I said that we needed to make our country a place where people who are living with dementia can lead the lives they deserve to, rather than the ones foisted upon them by prejudice and ignorance. In practice, this means every community becoming dementia friendly, embracing this most cruel of diseases, and seeing the people who have developed it as an asset, rather than a problem.

It requires a change in attitudes, approaches and opinions that will not happen overnight, and realistically some people will never be convinced by the argument that everyone with dementia deserves to live well with it, rather than simply die from it. However, given the current numbers of people with dementia, and the predicted number of cases for the future, many more lives are going to be touched by this disease than a lot of people may even want to contemplate at the moment, making this the time for the UK to become both more aware of dementia and more friendly towards it.

At every stage of dementia, from pre-diagnosis to end-of-life care, every service accessed by people with dementia and their carers needs to have an intrinsic appreciation of what dementia means, how it affects everyday life, and what can be done practically to make using services easier. For the wider community, it is about adopting the key principles of compassion, dedication and personalisation to ultimately become more dementia friendly.

None of this is achievable without widespread awareness and education of dementia across all generations, from education in schools to campaigns targeting people in their 20’s, 30’s and 40’s whose parents or grandparents may be showing signs of dementia, and finally to supporting people in their 50’s, 60’s, 70’s and 80’s who may have dementia themselves, be trying to look after a partner with dementia, or are concerned about the impact dementia could have on their life if they develop it.

To do this community healthcare services, community groups, social and charitable groups, local and national media, and technology like social media, apps etc need to pull together as one to reach as wide and diverse an audience as possible. Realistic but also positive coverage of dementia that informs people, rather than terrifying them, will prove that this disease is not a black hole of nothing, and that living well with it is an attainable desire for everyone with dementia and their families and friends.

At the heart of all awareness campaigning must be people with first-hand experience of dementia, whether they are currently living with it, caring for someone with it, or have done in the past. I have written previously about harnessing the power of people’s first-hand dementia experiences to appeal to the hearts and minds of the wider population, and that will never be more important than in the quest to make dementia friendly communities. These people are the pioneers who can lead the way in helping the whole country feel as passionately about dementia care as they do. Small seeds of change do already exist within social media, with the Twitter hashtag #dementiachallengers uniting people, like me, in this common goal.

As I have often touched on, whilst I wish my father had never had dementia, his years with it gave us as a family many memories and experiences that changed our lives in a positive way, finding hidden depths to our feelings and resources, and giving us the privilege of supporting a wonderful man in his life with dementia that, whilst he would have hated it, also gave him the opportunity to show great courage, dignity, good humour and warmth in living with it.

Although much has changed since my dad’s life with dementia began, there are still significant barriers for people living with dementia today. Access to services is still very much a postcode lottery, people are often not informed or supported regarding what they are entitled to, there is not enough emphasis on providing therapeutic dementia care (through the arts for example), not enough access to some of the great design and technological advances that can improve the lives of people with dementia and those who look after them, and there are many day-to-day obstacles to overcome. Even a simple trip to the shops, or going out for a coffee, can turn into people staring at you, whispering, being unhelpful, or refusing to make allowances for the needs of someone with dementia, and that is assuming you have the resources to even get out of the house or care home to begin with.

So much can be done to remedy this, however. Organisations can train staff to become dementia aware, not just to assist customers but also as part of the pastoral role good employers should adopt in supporting their staff in their personal lives, recognising that many of their employees will have family, friends or neighbours with dementia who rely on their help. Improving customer advice and liaison roles to encompass helping people with dementia who may be disorientated, confused, aggressive or upset, simplifying signage to help people with dementia to find their way, supporting people with financial transactions, adapting menus to reflect the needs of people who require soft or purred food because of a swallowing problem, and providing toilet facilities that help carers to change incontinence pads in privacy, are just a few simple but important issues businesses can address to become more welcoming for, and understanding towards, people with dementia.

It is not just down to businesses and service providers to make our communities dementia friendly though. If everyone understood dementia, recognised the symptoms in family members, friends and neighbours, and provided a supportive environment where we look out for each other, help with simple tasks, are able and willing to call for professional help when it is needed (and for that help to be forthcoming and appropriate), and took the time to offer kindness, a listening ear, a compassionate touch and a caring outlook, then all vulnerable people, not just those with dementia, would be able to live far more fulfilling lives that offer quality and richness.

Ultimately dementia friendly communities will only exist if there is a shared will between the people, policy makers, media and businesses to make this happen. Creating communities where people with dementia are welcomed, supported and enabled to get the maximum out of life will require flexibility, forward-thinking, huge commitment and above all instilling within our society how valuable people with dementia are.

Recognising the contribution people have made in their lives prior to having dementia, celebrating that, tapping into it and helping them to be as active, healthy and happy as possible during their life with dementia will need the rest of us to show the same courage and determination that my dad, so many before him and so many right now, are showing in battling their own personal dementia challenge.

Until next time...

You can follow me on Twitter: @bethyb1886

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