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Monday, 17 October 2016

Missing the morning chorus - Life with hearing loss

Hearing is one of the senses that I believe many people take for granted. I think the general assumption most of us make is that we are hearing everything, or at least everything we think we need to hear, and that hearing loss is something that hasn’t happened to us.

I had a bit of a wakeup call regarding my hearing earlier this year. I first noticed it when I was struggling to hear our baby crying upstairs, and it scared me – was I losing my hearing? As it turned out my hearing ‘loss’ was due to a build-up of wax, a common problem that anyone can be affected by, but it did make me think, particularly about how older people who are living with age-related hearing loss might experience the world around them.

The problem with age-related hearing loss, and the reason so many people struggle to recognise hearing loss as they get older, is because for the vast majority of individuals affected it is such a slow deterioration that they just don’t realise they are starting to miss parts of sounds. As time goes on it becomes more widespread, but the person is so used to missing sounds they just don’t realise that the richness of the audible world around them is slowly diminishing.

This has been of particular interest to me lately, as my mum has recently been fitted with hearing aids. I accompanied mum to her first appointment, and the result of her hearing loss hit me hard when the audiologist was playing birdsong to my mum and she couldn’t hear it (without hearing aids), but I could hear it clearly. Imagine a world where you don’t hear the morning chorus?

So if my otherwise fit and healthy 70+ year-old mum can need hearing aids, how many other people are likely to? The answer is probably quite a few, and certainly more people than those who are currently fitted with hearing aids. Sadly, hearing loss remains stigmatised in a way that correcting your eyesight isn’t. Wearing glasses, or contact lenses, is a way of life for many people I know, but suggest wearing a hearing aid to a person who doesn’t believe that they have hearing loss and you may as well be suggesting they have giant comic ears mounted on the side of their head.

Many misconceptions contribute to the stigma associated with hearing loss, including:

·        Feeling like a failure. It’s not a failure on the part of the individual that they aren’t hearing as well as they used to – for most people, age-related hearing loss is simply about the fine workings of the ear beginning to wear out, purely because they’ve been used so much. A sign of a life well-lived I’d say.

·        Fear of being ‘tested’. Having a hearing test is no different to a sight test in terms of the fact that there is no ‘right’ and ‘wrong’. It’s a healthcare assessment that is designed to diagnose any problems you’re having.

·        Audiologists want to sell you something you don’t need. A professional audiologist is there to help – if you don’t have hearing loss, or hearing aids won’t help you, then they should be honest about that and if they aren’t, seek a second opinion.
One of the biggest problems with gradual age-related hearing loss is that it’s often those around the person with hearing loss who become very frustrated with the person’s inability to hear things that others are hearing easily. Any child with a parent who has hearing loss will be tempted to resort to nagging them to go to an audiologist, I did, but educating yourself (something else I did) is much more helpful when creating a more constructive conversation.

The most extreme example of the consequences of age-related hearing loss that I’ve encountered concerned a person who went to see their doctor because their family believed that they were developing dementia. On putting the person through an audible memory test, the person scored so badly that the doctor also believed that they had dementia. It was only when the person’s hearing loss was discovered, corrected, and they were re-tested that it became clear that they hadn’t heard half of the memory test and therefore could never have answered correctly.

Hearing loss can be very isolating, particularly in social situations, sometimes making a person avoid going out if others are getting irritable with them. It can ruin the enjoyment of TV, the radio, going to the cinema and attending concerts: Imagine only hearing parts of your favourite piece of music. And as I’ve already mentioned those subtle sounds of everyday life, like birdsong, can be lost, leaving a person’s world far less rich than it might otherwise be.

There are also problems when sounds become distorted, or key sounds that a person needs to react to urgently are lost, like the sound of an upcoming car when you’re crossing the road. Untreated hearing loss is even being associated with an increased risk of dementia, with research presented in the USA earlier this year looking into the findings of physician Frank Lin.

Hearing loss, like other sensory losses, for a person who is already living with dementia can cause additional problems in providing that person with care and support. If an individual can't hear what you're saying, or enjoy things like music, then it's likely to severely impact upon their life. Even if the person's hearing loss has been diagnosed and treated (with hearing aids) years before they developed dementia, it's a well-known problem that a person may refuse to wear hearing aids, alongside glasses and dentures, as their dementia advances. My dad, whilst he had perfect hearing, refused to wear his glasses and dentures for the majority of his years with dementia.

If things had worked out differently for my dad and he'd had hearing problems, I'd have probably been the first person trying to persuade him to have a hearing test. So if you know someone whose hearing isn't quite what it was, or you are that person, have a test and find out. The miracle of hearing is too good to only hear half of life.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Monday, 3 October 2016

Deprivation and dementia

When you consider the experience of living with dementia, I think it’s fair to say that if you are a wealthy person living in a leafy, affluent, secure location your experience of life with dementia will be different to a person from a deprived inner-city area with no money (and possibly debt), living in unsuitable housing conditions in an area rife with crime. The basics of eating well, keeping warm and being able to get out and about when you are living in deprivation are likely to be challenging enough, before you even think about throwing dementia into the mix.

People from socio-economically deprived backgrounds are at increased risk of other health problems, both physical and mental, that may make them more susceptible to developing dementia (for example cardiovascular disease that could lead to vascular dementia), and are more likely to experience difficulties taking care of themselves, putting them at higher risk of infections, falls and problems associated with managing other conditions, for example diabetes.

They are also more likely to be diagnosed later when their dementia symptoms are more advanced, and often at a crisis point, most notably as a result of an emergency admission to hospital. This is due to lots of factors, but key ones are a lack of information about dementia symptoms and difficulty accessing services. People experiencing socio-economic deprivation are often more isolated than people from more affluent backgrounds, and may feel public services are judgmental rather than supportive towards them due to their circumstances.

Further down the line, there are also likely to be issues around accessing social care, for example homecare, which may mean a person struggles on at home alone for longer than they should, ending up reaching a crisis point as a result. To an extent this is true regardless of your circumstances, but it can be a particularly acute problem for people from deprived areas. If the person with dementia has a family carer, the carer is also likely to experience a far more difficult caring role due to lack of identification, information and support. Just accessing online resources, like this blog, won’t be possible if you can’t afford a device and an internet connection at home, or are unable to get to a library to use facilities there.

Out of sight, out of mind is often how socio-economically deprived people are seen by others and treated by society as a whole. Living with dementia is unexplainably tough for anyone, but much more difficult if you can’t see your GP when you need to, can’t access the wealth of information available online, don’t know how to and can’t afford to make your home environment more dementia-friendly (with signage, lighting and other assistive products), and can’t manage other health conditions, eat well and exercise your body, physically and mentally, to help yourself to live as well as possible with dementia.

Symptomatically, there are other important considerations too. Aside from the focus on memory problems so associated with dementia, one of the key issues a person with dementia can experience is a difficulty looking after their home and themselves. If your home is damp, poorly maintained and without adequate facilities to cook and wash, not having the cognitive ability to recognise this and take action can have significant health consequences, and could even result in death. Equally, living in a deprived area could put a person with dementia more at risk of crime if they are seen as a ‘soft target’ – another reason to want to hide away from others, pushing a person into an even more isolated life.

Taking all of these factors into account, the ramifications of socio-economic deprivation on a person with dementia are widespread and extremely serious . Yet these issues are largely ignored. Maybe this is because poverty is something that has always lurked in the shadows of society, or maybe it’s because there are just too many factors that need addressing when you consider how you might improve the life of a person with dementia who is living in deprivation – it’s not just about their health, it's about their housing, access to services, financial situation and even their education.

For commentators, it’s easy to turn your back. A person who is newly diagnosed and living in a damp, cockroach infested high-rise, inner-city flat, without enough hot water for a shower or to clean their clothes, who lives on the breadline (or below it), just isn’t as attractive as interviewing a person with dementia who lives in a comfortable semi in suburbia, with nice home furnishings and family photos on the sideboard.

Yet poverty plus dementia puts the ‘Big D’ into a totally different focus. You are unlikely to be able to live well with dementia, and will probably die younger than a person of the same age with the same type of dementia who has a more affluent life. End of life care in deprived circumstances is also likely to be far removed from what anyone might call a ‘good death’.

Ultimately, you could claim that in these austere times such disadvantage is inevitable. Harsh critics might even argue if it really matters: after all, living with dementia can be unmentionably tough no matter what your circumstances. But when I look back over my dad’s 19 years with dementia, I know we had a better experience than many people precisely because of living in a more affluent and secure part of the UK, with our own personal resources as well as the education and ability to access care and support.

For all of that I am very grateful, but imagining us in deprived circumstances puts a whole new outlook on everything we went through. Austerity shouldn’t be a watchword for neglect. Nor should your living circumstances determine how dementia affects you. Equality for all is a nice catchphrase, but this is one of many areas in dementia care and support where it is sorely lacking.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Monday, 19 September 2016

Life story work – The gift that keeps on giving

One of the loveliest aspects of becoming a parent has been taking our daughter on various trips to meet her extended family. On one such trip we were given a gift, not of a teddy or a baby outfit, but a book with memories of her granddad.

Regular readers of D4Dementia will know that the joy of having our daughter last year was tinged with the sadness that my dad will never meet her. He would have loved being a granddad, and I can only picture in my mind the huge smile and tears of joy and emotion that he would have had as he cuddled her for the first time.

The memory book we were given was something last discussed at my dad's funeral. My cousin promised to look out some photos, and write down memories he knew of from my dad's early life, and I was so touched to find that promise was still remembered over 4 years since we laid my dad to rest.

The book comprises old letters and photographs, alongside my cousin's account of memories from my dad’s childhood and early adulthood. Some details I already knew, but it’s fascinating to read about the places my dad visited, and some of the things he did with his parents and siblings. Dad’s regular routines in his young life, which probably seemed very mundane back then, provide a captivating insight and conjure up pictures in my mind of dad on his motorbike, singing songs around the fire and visiting favourite pubs.

I've written before about the value we had from life story work while my dad was alive, specifically the memory box we made for him. The creation of that box was a wonderful process, displaying it made us very proud, and the discussions sparked by the contents gave joy and pleasure over and over again. It truly was the gift that just kept on giving, and still does to this day, positioned next to my work desk.

For me, that last sentence really gets to the heart of the ‘point’ of life story work. Its value when the person is alive is well documented, but it remains just as valuable, perhaps more so, when the person is no longer with us. Keeping a relative's memory alive, and being able to remember them in happy times, having fun and living their life, gives a very comforting perspective on the loss you feel of your loved one.

The links between life story work and good dementia care are well established. Of particular note is the fact that life story work is hugely important no matter how well you know a person, hence its value for families and professional care staff alike.

If you know a person well, it can help to guide your mutual reminiscence and pride in your loved one’s life and achievements, as well as triggering conversations about favourite sports, music and films etc. If you are a professional who doesn’t know the person so well, life story work is like a window into their world, helping to guide and inform you as you provide care and support for them.

If the person has limited communication skills it enables you to gently prompt conversation. You may also find it beneficial when trying to soothe someone feeling anxious or upset, to lift their mood if they are feeling down, or to bring out the best in the person when they are having a good day and just need a few little prompts to spark off memories they can enjoy.

Life story work is as diverse as the society we live in, and we can all participate - no matter who you are, you have a life story. You might not think it's very exciting, but everyone has something worth sharing and something they can feel proud of. Indeed, one of the best ways to get staff involved in life story work for the people they are supporting is to begin by showcasing their own life stories.

Purely co-incidentally, in my consultancy work with care providers I have various clients who are either embarking upon, or trying to strengthen, life story work within their services at the moment. Different approaches are being utilised, which is precisely what I am encouraging - as in all aspects of dementia care, one-size-fits-all doesn't work.

Templates, guidance and resources are abundant on the internet for anyone looking to begin life story work, but in truth it's not about the format or model you access to help guide yours or someone else's life story work. The most important drivers for creating, maintaining and evolving a life story resource are enthusiasm, inspiration and commitment.

You have to see and believe in the value of life story work or it will simply become a nice 'project' that's started and possibly ended (or abandoned). In reality, life story work is a continuum. The best examples of it are never completed, much like that book we were given about my dad. He is no longer with us to benefit from it himself, but current and future generations can enjoy it and continue to add to it – there are still many blank pages to fill.

Given that this year’s World Alzheimer’s Month - or World Dementia Month as I feel it should be called - is themed around ‘Remember Me’, there seems no more fitting call to action for us all with World Alzheimer’s Day approaching on 21 September than to reflect on the place life story work has in our own world and that of our loves ones. Documenting memories and turning them into vibrant resources that tell their own unique story has a magical quality about it that I can’t put into words – you really just have to try it.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Monday, 5 September 2016

Is it World Alzheimer's Month, or World Dementia Month?

I should begin this blog by saying I am fully supportive of awareness-raising initiatives aimed at educating, informing and supporting people who are living with any type of dementia, their families, health and care professionals, communities and societies.

The biggest of these, purely for its global scale, is World Alzheimer's Month, organised and promoted by Alzheimer's Disease International. It is more than just semantics, however, to question the history behind the naming of this month of awareness-raising, and the signals our words send out.

Globally, Alzheimer's is a term used in many countries to describe any and every type of dementia. The problem is that technically this is wrong. Dementia is the umbrella term, and Alzheimer's Disease is a type dementia, one of over 100. Granted Alzheimer's Disease is statistically the most prevalent type of dementia, but there are still millions of people living with other types of dementia.

In the first ever dementia-related conference I attended after my dad passed away in 2012, one of the questions to the panel was why the UK Alzheimer's Society wasn't called the Dementia Society? Apart from the fact that such a change of name would be extremely similar to Dementia UK (another UK charity), the main reason given was the complexity of such a renaming exercise in terms of branding and public awareness.

I understand both the reasoning of the questioner at that conference and the logic of the person answering them. And I suspect a similar answer would fit to the question about why World Alzheimer's Month is so named, and Alzheimer's Disease International, and potentially every other Alzheimer's organisation around the world that carries the world Alzheimer’s in its title rather than dementia.

It can, however, seem very confusing for people who are new to the 'dementia world’, and very isolating for anyone who is diagnosed with a different type of dementia. Moreover, whilst it might be challenging for organisations to rebrand, there really isn't any excuse for commentators, media professionals and others who use Alzheimer's as a blanket term instead of dementia.

One of the biggest problems with Alzheimerisation (a term that I'm using in this context to describe how the word 'Alzheimer’s' replaces 'dementia') is how it alters people's perceptions of what is, and isn't, possible for people who are living with other types of dementia. For example, I vividly remember the following conversation with a lady who was struggling to understand what vascular dementia was:

Ms X: "But there are treatments for Alzheimer's, why wasn't your dad given some pills."
Me: "My dad had vascular dementia - Alzheimer's medications aren't licensed for people with vascular dementia."
Ms X: "But vascular dementia is just another type of Alzheimer's isn't it?"
Me: "No it isn't. Vascular dementia and Alzheimer's Disease are just two types of over 100 different types of dementia."
Ms X: "So what is dementia then, isn't it just another name for Alzheimer's?"
Me: "No. Dementia is the umbrella term of all of the different types of dementia, of which Alzheimer's Disease is just one."

To be fair to Ms X she wanted to learn, but rather than finding my explanation illuminating you could clearly see that she was mentally unpicking everything she'd previously believed to be accurate, and was wondering why on earth we talk so much about Alzheimer's Disease when it is just one type of dementia.

I first touched on how the word 'Alzheimer’s' replaces 'dementia' in my 2012 blog ‘So how much do you know about dementia’ – A post where I went on to bust lots of myths about dementia. Some of those myths have received some fairly high-profile coverage since, not least through the Dementia Friends initiative, but the Alzheimerisation of dementia remains very prevalent, and I suspect it always will be.

I would be the first to admit that such an outcome isn’t the worst news in the world if messages that developing a type of dementia isn’t a normal part of ageing, that it isn’t just older people who develop the different types of dementia, and that there is so much more to the person than their diagnosis of a type of dementia become imprinted into the public consciousness and drive real and lasting change that is positive and enabling for people who have a type of dementia.

But I still think we can do more, go further, and make sure that the messages we put out don’t just appear to be confined to people who are affected by Alzheimer’s Disease. I have been an outspoken advocate of changing the words we use around dementia, and will continue to be, but for Alzheimerisation to be reduced everyone needs to play their part.

So, as you take up this World Alzheimer’s Month theme of ‘Remember Me’, it’s a timely reminder to remember that Alzheimer’s Disease is just one type of dementia.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Monday, 22 August 2016

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...
Beth x

You can follow me on Twitter: @bethyb1886

Monday, 8 August 2016

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...
Beth x

You can follow me on Twitter: @bethyb1886

Monday, 25 July 2016

Reframing the reporting about violent older people in hospitals

Recently the BBC ran a story that over 75's are responsible for 57% of physical assaults on NHS staff in hospitals. These assaults range from biting and pinching through to some of the most serious attacks that are recorded. In trying to explain why these incidents are happening, the stress and confusion that a hospital stay can cause were highlighted, and patients who are living with the effects of dementia were inevitably mentioned.

Sadly, I think many people reading the headline and acknowledging that dementia is mentioned will, yet again, assume that all people with dementia are violent. Little consideration will be given to how hospital environments contributed to the circumstances around these incidents, or indeed how the lack of comprehensive staff training or appropriate staffing numbers did likewise.

What also won't be examined is how many people were avoidably in hospital in the first place, or who had remained there for far too long when not clinically necessary because of failings in the availability, organisation or funding of social care places. It's just quick and simple to look at older people and say: "They are violent because they have dementia and are attacking the people trying to care for them."

What has to be understood is that people with all different dispositions and from all walks of life develop dementia. If you were an unpleasant person with a quick temper and a tendency to be violent prior to developing dementia, your dementia may or may not make those character traits more pronounced.

Likewise, for some people who were mild-mannered and never hurt anyone, the development of dementia can lead to symptoms such as paranoia, hallucinations, disorientation, confusion and anxiety that can result in a person lashing out without realising they are or without intending to. It is simply their reaction to what they are experiencing in that moment, allied with the circumstances (environment, staffing etc) that they are in the midst of.

Delirium and other mental health problems that either haven't been diagnosed or aren't being well treated can also contribute, not to mention the side-effects of a medication, poly-pharmacy or indeed something as simple as a urinary tract infection, being hungry or tired - do not underestimate the effect of sleep deprivation. A person may also feel angry, ashamed or undignified if they aren't being supported to wash, use the toilet or be mobile in the way they would want to be, resulting in feeling uncomfortable or becoming incontinent or immobile.

I am not in any way making excuses for violence against NHS staff, nor would I ever condone it, but before we brand older people as violent patients I think we need to understand how being a hospital patient can make you feel.

Last year I spent one night in hospital following the birth of our daughter. All the care I received was wonderful and the staff were very kind and helpful to me. But I didn't sleep a wink. Nor did I particularly like the food. I definitely wanted to lock the bathroom door when I went for a shower, and ideally would have preferred to keep the curtains around my bed closed, but because we all had to be in view of the staff so we could be monitored, that wasn't possible except for breastfeeding or getting dressed.

Granted, I had just had a baby and hormones were going wild, but fundamentally I was a knowledgeable, articulate person who could speak up for myself and wasn't in danger of having to stay in hospital any longer than was absolutely necessary. Yet I felt vulnerable. And if I can feel vulnerable, then I can only imagine how an older person, potentially with reduced communication abilities due to their health, might feel.

I have written before about how undiagnosed pain in a person with dementia can affect that person. I've also written about unmet needs being misunderstood as 'challenging behaviour' (a phrase I hate), and about the effects of illness, incontinence, hunger, dehydration and sleep problems. I've also addressed the shortcomings in hospital environments for older people in comparison to the environments we offer children.

All of these issues can easily converge and result in avoidable incidents. Aggression is so strongly linked to dementia that I meet people who are surprised if their loved one isn't aggressive. Yet there is so much that can be done through person-centred care, occupation, reablement/rehabilitative support and life-story work to support people with dementia to cope with their symptoms.

Whilst the BBC based their story on firm evidence, with figures obtained from NHS Protect (the organisation dealing with crime across the health service), I suspect that many people simply won't see beyond the statistics and examine the real issues, let alone tackle them. As a result fear of having contact with older people and people who have dementia proliferates. With such ostracisation comes isolation, and an even greater chance of people who are already feeling misunderstood reacting to that in ways that hurt them every bit as much as those trying to provide care and support for them.

Understanding about dementia has improved over the years, but it isn't where it needs to be to provide appropriate, individualised support for every person. Geriatrics isn't an area of medicine that is oversubscribed with our brightest and best professionals in the way paediatrics might be considered to be, and ageing within our society still isn't universally viewed with dignity, respect or compassion. Often older people's services are underfunded, stretched to capacity (and beyond) and seen as little more than a 'dumping ground' for people viewed as adult babies and stripped of their identity.

We are long overdue a complete re-evaluation of how we care for older people in hospital, including the need to even be in hospital to begin with, and an honest stock-take on how circumstances (many of which we can control) result in incidents that are then beyond anyone's control, least of all the patients at the centre of them. As in all areas of healthcare, prevention is always better than cure.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886