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Monday, 28 November 2016

The art of gentleness

Earlier this month I found myself in the honoured position of being a judge for a care awards event. As judges we had six categories to review, and there were some amazing testimonies of the care and support dedicated social care staff had given.

Amongst the many pieces of supporting evidence we reviewed, one short testimony from a lady who was 101 years-old made me think. She commented on how this particular care worker was, "Very gentle and caring."

It struck me instantly that we don't talk anywhere near enough about gentleness as a quality. It’s perhaps taken for granted, a 'given' that everyone providing care and support will be gentle, but gentleness has many facets, and can mean many different things to different people.

My idea of gentle and yours may be very different. How a sensitive person, who feels pain easily, might interpret gentleness is going to be different from a person with a high pain threshold who's always been pretty tough with themselves, perhaps from doing a hard physical job.

How health and social care professionals interpret gentleness is also going to vary immensely. Someone might believe they are being very gentle, when in actual fact the person in receipt of their care or support may feel very differently.

Sometimes gentleness is lost when time is short, there are multiple tasks waiting to be done, our minds are elsewhere, or if a person we are trying to help is verbally or physically unhappy with us. None of these are excuses, just the facts facing many professionals.

In training, gentleness is rarely mentioned. We talk about being person-centred, about compassion and kindness, but gentleness is mostly just assumed. Can gentleness be taught? If you mentor someone with the right aptitude and values closely enough, showing them what a gentle touch and gentle movement is, then some element of learning can happen, but you cannot physically become someone else’s hands so there will always be an unknown quantity of how gentle that person is actually being.

But of course gentleness isn’t just about the physical, however much it is associated with our actions and how we utilise our own physical strength. Gentleness in how we speak, behave and respond emotionally to a person is absolutely vital, but even less thought about than physical gentleness. A short, sharp response to someone, perhaps because we’ve answered their question numerous times already today, or an insincere tone in our voice can hurt someone who is emotionally sensitive.

Emotional sensitivity may exist because the person has always been predisposed to it or because they have an existing mental health condition. It may be a one-off because they are a having a bad day or it may be as a result of living with dementia. Whatever the cause, however, the need to be gentle on the mind is ever-present.

One of the wonderful things about us as human beings is our ability to feel acute emotional responses. Granted, it can be a double-edged sword, but it also opens up a world of feelings that is virtually limitless. When we provide care and support for a person, it’s crucial to be aware of everything about our approach, and consider not just what we say, or don’t say, but also how we say it.

Much like physical gentleness, we may not see anything wrong in snapping an answer, gesturing dismissively with our hands, or responding to a request with delaying tactics (for example, asking the person to sit and wait rather than address their need) – after all people do it to us and we don’t think anything of it. But these are not examples of gentleness, and the person on the receiving end may feel hurt, unwanted or unimportant.

Vitally, these feelings may not be visible to us, therefore we may not even consider that we’ve caused them. One of the great problems with the abandonment of gentleness is that its effects are often completely unseen. They strike at the heart, but the most sensitive people who experience them will often keep them locked in their heart. The result is as harmful as a lack of physical gentleness, just without the bruises to prove it.

I would urge everyone working in health and social care to consider what gentleness means to them. When you think you are being physically gentle, try and go down a notch or two more on the gentleness scale, being even more gentle than you have previously been, and see how the person responds – they may be more comfortable, happier and more secure in your company.

To be gentle on the mind, take a moment to think about your interactions. Draw breath before you dive in with whatever you were going to say or do. And never assume it is only women as the ‘fairer sex’ who need physical and mental gentleness. Men do too, particularly when they are more vulnerable as a result of living with dementia.

Until next time (which will be my 200th D4Dementia blog!)...
Beth x







You can follow me on Twitter: @bethyb1886

Monday, 14 November 2016

Is your workforce person-centred?

This morning I spoke at a conference on the importance of knowing the person. My audience was predominately social care providers. My remit was to focus on real lives, drawing on my experiences of care in terms of the importance of knowledge and skills and with a strong message of person-centred-ness in all care.

Since so many of my blog readers are also social care professionals, I thought it would be worth sharing some of what I spoke about. But this blog isn’t just for social care professionals, it’s for families too. My understanding of what makes great person-centred care began in the years my dad was living with dementia, and despite all of the experiences I’ve had through my work since, the education I had from my dad remains unsurpassed.
© BETH BRITTON 2016

Since my dad’s passing, the rise in prominence of person-centred care has grown. Virtually every care and support provider will tell you that their care is person-centred. The danger with person-centred care being in the mainstream, however, is that huge variations now exist in how different providers interpret this.

Everyone thinks they deliver great person-centred care, but do they?


As part of my presentation, I shared three slides taken from the training that I devised for social care staff, particularly care home staff, that is based on my personal experiences and designed to help staff understand more about the practicalities of what person-centred care means. Some of the examples I use are very obvious but don’t be fooled by the simplicity. The most person-centred organisations I know realise that EVERY little detail matters.


To explain the many facets of person-centred care, I like to begin with the obvious physical differences between individuals, picking up on their appearance and personal effects. But I also talk about interpretation beyond the physical characteristics. Think expression, personality and history as just three examples.

Expanding more into everyday life, it’s vital to understand the role of a personalised environment and appropriate communication. Beyond that, the key question is how each individual's qualities, interests, preferences, abilities, needs and aspirations are supported. Maintaining skills, a sense of purpose and the enjoyment of achievement is vital for all of us, but for this to happen in care environments staff need to believe in it and make it happen. In dementia care especially we talk about entering the person’s world, but in reality this is vital to achieving person-centred care for any individual.

I know from my experiences of delivering my training that staff sometimes wonder how being person-centred is going to benefit them. Their bosses might argue that their staff aren’t at work to benefit themselves, they are there to provide care and support for the people accessing their service. But if we don’t look at how being person-centred enhances the knowledge and skills of staff to help them feel a sense of achievement and pride in their work then we are making a big mistake.

When staff struggle to support a person who is living with dementia because that person is experiencing symptoms associated with their dementia like confusion, anxiety, emotional outbursts or repetition, being person-centred in their whole approach can not only halt the escalation of these symptoms, it can change the feelings, perceptions and motivation of staff. They don’t leave work feeling baffled and as if they’ve failed the person, but instead are able to reflect on how their response helped the person, and how they might refine that response further in the future to enable an even more positive outcome.

© BETH BRITTON 2016
Ultimately, though, it would be wrong to talk about person-centred social care and not address the culture and leadership of organisations. It’s no fluke that every CQC ‘Outstanding’ rated adult social care provider is well-led.

Sadly, I’ve seen too many care homes where Joseph White is supping his morning coffee (that should be tea), eating a digestive (that should be a custard cream) wearing the vest belonging to Margaret Ross (but Margaret’s a large lady and she’s got plenty so it’s fine – it isn’t), while Joan Ellis is listening to Frank Sinatra (even though he’s her least favourite member of the Rat Pack – she’s a secret Sammy Davis Jn fan. Oh and by the way, she’s mumbling about being cheated on and fighting with a man because she is remembering headlines of Sinatra’s stormy personal life). Meanwhile, Edward Lewis is pacing the corridor, wanting to fix engines but being told to sit down and have a nice glass of juice (only Edward hates ‘juice’ because he knows it isn’t real orange juice, just watered down squash).

The challenge for every social care provider isn’t just knowing, and by knowing I mean REALLY knowing, the people they are providing care and support for, but knowing their workforce too. Joseph, Margaret, Joan and Edward could just as easily be employees that a social care provider doesn’t treat in a person-centred way as they could be residents or clients.

Complacency is the enemy of person-centred care. Recruiting staff with the right values and ensuring they complete e-learning modules on person-centred care isn’t enough. Authentic and embedded person-centred care is cultural, organisational, and comes from the very top and pervades down through every employee no matter what their role or responsibility.

So, my challenge to every social care provider reading this blog is:

Embed observation and responsiveness into your leadership. If you think you already have, do it again, evaluate and keep evolving the leader you are, and the expectations you have of everyone in your team.  Just as no two days with my dad during his years with dementia were ever the same, so the knowledge and skills needed to be a truly person-centred social care provider never stand still either.

Until next time...
Beth x







You can follow me on Twitter: @bethyb1886

Monday, 31 October 2016

How dementia and personality interact

We talk A LOT in dementia care about how dementia changes a person. Often it's distilled down into very negative language, and bracketed as 'challenging behaviour' (a phrase I dislike immensely). Yet, the spectrum of change is immense, very personal to each individual, and definitely worthy of far greater exploration and understanding.

Part of the reason that I think so many people struggle with the personality changes associated with dementia is you can't 'see' them in the way you can see a physical problem. Whilst physical changes can be very distressing - for example if a person becomes immobile, loses weight, loses teeth, wears a catheter or needs help to eat - we associate that type of change with a need to care for that person, helping to minimise any discomfort and keep them as well as possible.

Personality changes in the general discourse of life are bracketed under the 'mental health' banner, and as such have an additional stigma attached to them, before you even add in dementia as a factor. We also make a lot of assumptions when associating personality changes with dementia, most notably:

   That the person with dementia has never experienced this type of change before. Are we really sure that in their whole life course to this point that they haven't had times when they've been emotional, depressed or angry? They may have concealed these feelings from others, even people very close to them. The difference may be that now they’ve developed dementia, they find it harder to conceal these elements of their personality.
 
   That every person who develops dementia was a 'nice' person before they developed dementia. It may be unpalatable to admit it but we are all different, and some people just don't get on with other people of contrasting personalities no matter how much we might want them too - be they other residents in a care home, health and social care staff or even their own family. That, as they say, is life.

Personality changes can be temporary or permanent for a person with dementia, depending upon  the damage to the person's brain (for example a stroke may mean an instant change for a person), the type of dementia they have (for example people with a form of frontotemporal dementia may have more pronounced personality changes), and other factors such as who is around the person (the company of some individuals may trigger different reactions), their environment, other health conditions, side-effects of medications, and even issues like changes in the seasons (increased darkness in winter for example) or memories of certain times of the year, events, people or places.
 
Personality changes encompass as many differences as you can imagine. Examples include:

    A previously relaxed person becoming very anxious or angry (or vice-versa).

    A previously more detached person becoming much more emotional (or vice-versa).

    A previously tough person becoming a lot 'softer' and showing their feelings more (or vice-versa) - This was true for my dad.

    A previously private person becoming more of an exhibitionist (or vice-versa).

    A previously tolerant person becoming intolerant (or vice-versa).

You may recognise someone you love, or yourself, as having undergone such a change, even a more subtle one, as a result of developing dementia. What I think those of us without dementia, and particularly family carers and health and social care professionals, need to understand is that:
 
   Change is ok, even changes that we perceive as difficult. The more we worry, try to correct, mourn and yearn for the person 'as they were' the harder we make it for the person with dementia and ourselves. Adjustment is hard, I know that only too well, but failure to adjust is harder still.

   If we can adapt our approach and interactions with the person, we have the ability to offer the mental equivalent of what I wrote about above in relation to physical changes, namely to; "Care for that person, helping to minimise any discomfort and keep them as well as possible". Examples of how to do this are through person-centred care, life-story work, reablement, occupation, sensory therapies (including touch), making spiritual connections, music, our approach to personal care, and even by something as simple as modifying the way we communicate.

   Don't automatically view medication as the answer - often the first resort for any 'negative' personality changes is to assume that the person is depressed and put them onto anti-depressants. Medication may be suitable in a few situations, but generally the answer is greater understanding, care and support on the part of those around the person. Again, it goes back to the points about adjustment and adaptation.

Every day can, and often is, very different. Sometimes the changes in a person's personality may be more, or less, pronounced. If they become less pronounced, you may feel like the person is 'returning to their old self', only to see the 'reversal' of that the next day, week or month. It can seem cruel, and is a fertile breeding ground for the 'blame game', where the person with dementia, or a carer or family member, feels such changes very personally. If changes can be linked to a particular aspect of the person's life, then mitigating against that trigger could obviously be very beneficial, but sometimes there is no apparent 'reason' apart from the unpredictability of dementia.
 
During my dad's latter years with dementia I saw him cry more than I had in all of the years prior to that. I saw anger and anxiety too, which I wouldn't have associated with my dad prior to his dementia. With the power of hindsight, however, I can also see reasons for these differences in him, ways in which I, and others, may have contributed to them, not to mention environments like hospitals and care homes, and some medication he was given.
 
That's not to in any way exclude how vascular dementia affected my dad's brain - so much of what he experienced was, from the perspective of the physical changes in his brain, beyond our control. Coming to terms with that, whilst trying to provide the very best care and support you can, is a balancing act that is as fine as any personality change can be.
 
Until next time...
Beth x







You can follow me on Twitter: @bethyb1886

 

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