Wednesday 28 November 2012

Going places

For most of us, travelling is part of our everyday routine. From going to work, looking after our families, shopping or enjoying activities, getting from A to B is just another challenge along the way. Travelling, whether it be close to home or far away, is also associated with pleasure - we do it to see something familiar and nostalgic, or experience the amazing for the first time. You may travel to enjoy a change in climate, experience a different pace of life, tackle an adventure or simply find rest and relaxation.

All of the above are perfectly valid reasons to move yourself from one location to another, and that does not change when someone has dementia. Interestingly my father was never a great traveller - indeed he never left the UK his whole life - and yet when he went into care as a result of his dementia, he became one of the home’s most extensive ‘travellers’, or as it was termed in those days, ‘a wanderer’.

He would walk endlessly along the corridors of his nursing home, and although it kept him fit it brought problems too. Dad was often reluctant to rest during mealtimes, and even when he was persuaded to sit to eat or drink, he would often nag me to ‘get on with it’, so restless was he to keep moving. As he became more unsteady on his feet (partly due to his dementia, but mostly because of the long-standing knee problem that he had), he became prone to falling, resulting in numerous trips to hospital for wounds to be stitched up.

Still he kept walking, undeterred, with an increasingly unbalanced motion until one day, without warning, his walking stopped and never resumed. Efforts were made to restore his mobility, but his knee could no longer support him, and due to his dementia he was unsuitable for knee replacement surgery. So my dad was no longer ‘a wanderer’. Except in my mind he never was.

Wandering suggests aimless moving from place to place without any clear objective, but that is not the case in people with dementia. I have written previously about the need to appreciate, understand and connect with a person who has dementia within the world THEY are living in. It may be a world from their childhood or their years as a youthful adult, it may be a happy place or a sad and worrying place. Wherever it is and whatever the circumstances, the person with dementia may well feel compelled to do certain things, and have great purpose and direction in doing them, however fleeting that may be.

When someone with dementia walks constantly, it may be as a result of seeking, finding, expecting or hoping to see a person, place or object, or to get away from something. It may also be that they feel too hot or too cold in their current environment, they may be looking for the toilet or to make a drink or a meal, they may be bored, wanting to escape from a particular smell or noise, confused about the time of day, feeling energetic or needing to try and walk off a pain or discomfort. You may never discover what their reason is, or the person with dementia may go into great detail about what they are doing. It may prove to be a phase, or a physical problem, like in my father’s case, may end it.

For my dad, much of his walking was harking back to his life as a farmer and a gardener. Walking the fields, rounding up the cattle, sowing crops, ploughing and harvesting. Another man in the care home had also been a farmer, and if anything he walked even more than my dad. A female resident had very different reasons. She had been an executive and travelled extensively abroad for both business and pleasure, with a particular love of dancing the night away on cruise ships. Another lady had been a busy wife and mother all of her life, and was used to being on her feet cleaning, tidying, cooking and running around after her children.

Sometimes it can be important to find ways to persuade someone who walks constantly to take a break. If they lose too much energy they can become prone to falls, and walking constantly at night when they would normally be sleeping can also be dangerous as tiredness develops. Eating and drinking whilst on the move is not advised, especially in people who need more time to chew and swallow their food to avoid choking. Constant walking can also bring those who are doing it into contact with others who may find their movement objectionable.

Building those break times into the walking routine means excluding a physical reason why the person with dementia is walking (ie: needing the toilet), and then finding an occupation for them that either ties in with their reason for walking (if you are able to discover what that is) or involves something that captivates their imagination, thus temporarily overriding their compulsion to walk. Never fall into the trap of viewing their walking as unnecessary though. Re-read the first paragraph of this blog post and for every reason you or I have to travel, remember that in the world of someone with dementia, they may have those exact same reasons too.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 21 November 2012

NCD (Otherwise known as dementia)

It was only ever going to be a matter of time before the increased profile of dementia brought about a renaming of it. Thanks to the American Psychiatric Association (Representing 36,000 physician leaders in mental health) their newest version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) will, from May 2013, term dementia as ‘major or minor neurocognitive disorder’.

Why? It is believed that the term dementia is stigmatising to people living with it and is not well accepted. The idea of the new terminology is to focus on the decline from a previous level of functioning as opposed to a deficit. It is also designed to better reflect the variations in the different dementias, rather than emphasising the need for memory impairment to be present for a diagnosis to be made (in some forms of dementia, memory problems are not the first symptom).

It is also worth pointing out that dementia has been successfully renamed in Japan (The old word for dementia ‘chihou’ meant stupid. The New word ‘ninchisho’ introduced in 2004 means cognitive impairment). So all well and good then. Or is it? If you are scratching your head in amazement, believe me you are not the only one. Science meets semantics meets political correctness meets, in my case, frustration. I do not believe that this is a helpful step forward. It is playing with words and creating unnecessary debate whilst the real issues, that are frankly much more difficult to tackle than name changes, compete for attention.

It is true that many people avoid seeking a diagnosis through fear and stigma, but changing a name will not remove that. The root of fearfulness comes from the concerns people have that there will be no support for them as they navigate their way through their journey with this disease, a journey that most never expected to make and are not prepared for. Supporting someone in their present situation, and helping them to plan for the future, is where every effort and resource should be directed if we are really serious about improving the lives of people with dementia.

There is an argument that the Latin origins of the word dementia are in themselves stigmatising. I suspect, however, that most people do not go home and look up dementia in the dictionary when they have a diagnosis of it. Certainly when my father was diagnosed we were united with him in not dwelling on the label attached to his symptoms. We were far more concerned about what the future would hold - how could we support him, where would we find support ourselves, and how would we adjust to the huge change in all our lives?

As for dad, he was only interested in walking, eating, talking, singing and getting on with things – we never sat and discussed the definition of dementia with him and he was totally unmoved by references to it. We had absolutely no problem in telling friends and family that he had dementia (by the time dad was diagnosed he did not have the ability to tell people himself). On breaking that news, my view was that if anyone had an issue with it that was their affair; I had no time or energy to waste on those with small-minded attitudes.

Dementia in itself may not be a perfect word for our present day understanding of this disease, but there comes a point when you have to accept that there may never be a perfect way to describe symptoms that most people will find distressing no matter what you call them. Major or minor neurocognitive disorder will no doubt also find objections. Adding ‘disorder’ to the proposed new name for dementia has its own negative connotations, the introduction of the words ‘major’ and ‘minor’ could confuse people about the severity of their neurocognitive disorder and long-term prognosis, whilst the sheer mouthful of the full name will bemuse many. At best this will lead to the abbreviation NCD, and in many cases, it will result in the explanation, “Otherwise known as dementia.”

If dementia could be associated with care, compassion, kindness, understanding, fairness and opportunity then I think the word would be seen in a similar light to the way in which cancer is now. So much good work is being done to raise the profile of dementia, and I am a firm believer that in all matters of awareness, care and training we should keep language simple (as I wrote about here). Working to explain what dementia means from a practical point of view, and how people can genuinely live well with it is actually far more relevant than the umbrella term for a group of symptoms.

Personally I have no vested interest in decisions over terminology. Whatever the disease we currently know as dementia is called in the future will not affect what I do – my interest is broadly in our older population, particularly people with dementia and their families, and how we can make their lives better. Having walked their path, I know what was important to me over the 19 years of my father’s dementia, and what his symptoms were called did not enter into that.

All of this makes me wonder who would be the winners from ‘re-branding’ dementia? Pharmaceutical companies? Advertising and marketing executives? Businesses that make and print promotional materials? People who are paid to sit in rooms and dream up new ideas? In fact pretty much everyone bar the people who really matter - people with dementia and their families. I suspect that they will just roll their eyes, bemoan the spending of precious budgets on calling dementia something else, and continue to struggle on in their daily lives. Sadly for many, struggle is the optimum word in that sentence, and alleviating that is where all our focus, energy and money should be directed.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 14 November 2012

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...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 7 November 2012

My dad

My dad
My dad
Welcome to my 40th post on D4Dementia. Back when I began this blog I had no idea it would become so successful, widely read and much loved, so I would like to thank each and every one of you for reading D4Dementia, spreading the word about it, sharing your stories with me and supporting my work so wholeheartedly, it is much appreciated.

My aim for D4Dementia is that it represents a place where those who have dementia or care for someone with it can find solidarity, support, help and advice, whilst also being a source of insight for professionals working in dementia care and policy makers tasked with improving the lives of everyone living with dementia. As I have said previously,  everything my dad went through is there to inform, educate and influence others – I believe he would have wanted to make a real and lasting difference, and I hope that will be his legacy.

Sadly the many people who have read about my dad’s dementia journey will never have the chance to meet him, so you will have to take it from me just what a down-to-earth, kind, loving, charismatic, funny and unassuming man he was. He worked hard but never played hard, he loved his family, animals, nature and the countryside, spent his spare time reading books, listening to music and singing songs (he had a beautifully rich, deep voice), enjoyed watching football, cricket and rugby, never travelled abroad, always loved his Sunday roast (especially when it was beef and Yorkshire puddings), believed in goodness, fairness and truth, and taught myself and my siblings so many values, most notably concerning dignity and respect, all underpinned by the simple idea that you treat others as you would wish to be treated yourself.

My happy childhood with my parents never extended into my teens and twenties – dementia crept into our world when I was about 12 years old, and over the following 19 years changed everything about my relationship with my father. Now I visit his grave when only a few months previously I visited his care home. Just over a year ago we had an amazingly happy family day out at a local woodland, a place I returned to this week. As I walked through the carpet of leaves, I reflected on that visit with dad and how the abundant happiness on that day is even more powerful now that it was then.

I think you only truly realise just how precious those times are when you know you can never have them again. It is so easy to see dementia as a reason to just ‘get through the day’ – do what you have to do for your loved one, deal with all those problems and issues that occur on a daily basis, and forget in the process to just live in the moment. Take in the good things (they are there, some days you just have to look harder for them), work through the difficulties (not allowing them to obscure everything else) and allow yourself to feel and express your emotions, never bottle them up.

Above all, when you care for a loved one with dementia, remember that they are still a part of you. Even now, with my dad passed away, so much of what made him my dad is in me – not least his love of writing. He dabbled in it for many years during my childhood and I think he would wholeheartedly approve of my career choice as a result. His qualities are something I try to bring to my work and my life, but even more than that, they represent the foundations of good dementia care.

My father was actually never a man who sought or enjoyed the limelight. He was self-deprecating, never wanted a big fuss on his birthday or at Christmas, would always try and stand at the back in a photograph, and was happiest watching and supporting those he loved. Yet interestingly, though his writing, he had a steely and sadly unsuccessful desire to tell his story – the story of his youth, of the landscapes and animals that shaped it, and the love he had for a life that was gone but never forgotten.

When dementia intervened in our lives it focused dad’s mind once more on those long lost days before it took him from us, leaving his more recent story to be told. So here’s to another 40 posts on D4Dementia, many more readers along the way, and most of all to my dad – an amazing man who taught me so much and I hope will teach others even more.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Thursday 1 November 2012

Good to talk?

Having had 19 years of first-hand experience with dementia, I always find it very interesting listening to other people talking about it. By far the most powerful accounts are, for me, those that come from people who are living with dementia, those who are looking after them, and carers whose dementia journey with their loved one has come to an end.

Perhaps that is because of my background and close personal involvement in caring for my father, or maybe it is because there isn’t a theory, concept, project, service, product or sound bite that sums up dementia, explains it, makes it real and shows us a way forward like listening to people who actually know what living with dementia REALLY means. Tales of day-to-day struggles coupled with humour, honesty and warmth are, in my opinion, the greatest education tool for anyone working in dementia care who lacks their own personal family experience of this disease.

I will never look at dementia from a ‘professionals’ point of view. I am not medically qualified, I am not an academic, and incidentally I am not seeking to become either (probably a little too long in the tooth now anyway!). In that regard I suspect that I was in the minority at the 7th UK Dementia Congress, but then again I was also in the advantageous position of listening to people who are living with dementia talk and seeing so much of my dad in them from his earlier years with this disease.

Back then no one really spoke about dementia – now everyone is talking about it. The awareness is fantastic but I do not want dementia to just be another trendy bandwagon to jump on, or for real progress in care to be drowned in jargon, with business people trying to out-do each other for the latest, greatest idea. If there is one piece of advice I have for anyone in dementia care, it is that in my experiences with my father and many others the best aspects of good care are also the simplest.

That does not mean, however, that we cannot embrace new ideas. For me, two of the most enjoyable presentations I saw were from professionals who had come from overseas to explain how they are enhancing the lives of people with dementia. Randy Lee Griffin from the United States spoke about a program to bring the joy of birds, bird-watching and nature to people with dementia – a brilliant idea that reminded me of my father’s love of the great outdoors, how much he enjoyed watching and hearing birds whilst outside, the CD of birdsong that he had in his room, and a life-like soft toy cockerel that his hands spent many hours examining.

Yolanda Brand from South Africa detailed how her care home have enabled residents to keep in touch with their loved ones via social networking – a fantastic idea, not designed to in any way replace visiting or personal interaction, but to enhance communication when families are far away. To me it spoke volumes about the importance of families in dementia care, something that I feel needs to be emphasised far more than it is. It is vital to not only acknowledge and support those who are caring for a loved one with dementia and the many family members who are touched by this disease, but to tap into the unique knowledge base that they offer to professionals and policy makers (something that I wrote about in this post on good dementia policy).

For anyone reading this wondering if all the talking really changes anything, I would say that no matter how good talking is, action is what really matters. Many people are striving to do excellent work and my many colleagues within Dementia Challengers (#dementiachallengers) are testimony to that, but my thoughts during the Congress were predominantly focused on the people who were not there. Those whose dementia meant that they could not attend, those who were caring for someone with dementia whilst we were all talking and listening, those who were hearing a dementia diagnosis from their doctor, and those who were mourning the passing of a loved one as their dementia journey ended. They are and should always be the focus of everything anyone does in dementia care.

Should you need inspiration to keep that focus, I hope my last tale from the Congress will provide it. I was in the reception hall having just arrived when I met, via the person I had travelled with, one of the speakers that day. Introduced to me as Trevor, he greeted me warmly, shook my hand and kissed me on both cheeks. We exchanged a few words and then he left. When I met him I thought he was one of the many professional speakers at the event. I only discovered later, as he took to the main stage, that he was living with dementia.  A moment to reflect, perhaps, on who the real experts are.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886