Monday 21 December 2015

My top 10 most read blog posts

One element that fascinates me about blogging is which topics get the most attention from readers. There is no particular formula for how I choose what to write about, so to see what becomes most widely read is really informative for me. 

To round-off 2015, I wanted to compile a blog that reflects the posts on D4Dementia that have been read the most. With over 170 entries on a variety of topics relating to dementia, health and social care, there is certainly plenty of subject matter to trawl through, and for me, many fond memories of writing particular blogs.

So (drum roll) here is my top 10 to date:

10 – Think about the ‘Dementia Words’ that you use
Published in May 2015, this post focuses on the language used in relation to dementia, a topic that always ignites passionate responses. The inspiration behind this particular post was the Dementia Action Alliance and DEEP (Dementia Engagement and Empowerment Project) Call to Action entitled ‘Dementia Words Matter’.
9 – NCD (Otherwise known as dementia)
Published in November 2012, this post focuses on the drive to change the name of dementia to ‘Major or Minor Neurocognitive Disorder’. Unsurprisingly, as it’s another post focused on language around dementia, it has been a very popular read.
8 – Hydrated and happy
Published in May 2013, this is the first of what I’d call my ‘practical advice’ posts to feature in the top 10. Hydration is such a key topic in dementia care, so I'm delighted it has been so widely read. 
7 – The carer’s job description
Published in June 2012, this post remains one of my personal favourites. I’ve written extensively about the role of family carers since ‘The carer’s job description’, but I don’t think I’ve ever improved upon how I opened this particular blog: “If you had to be isolated, unsupported and fight the system, would you apply to be an unpaid carer? This is not a position that fills you with hope for the future, gives you room for personal development, or brings the benefits of structured team work. Yet thousands of people fulfil this truly unique role; not because it was their dream job and certainly not because of the bonuses and benefits.”
6 – Understanding aggression
Published in July 2013, this is the second of my ‘practical advice’ blog posts to make it into the top 10. Although I’ve never been entirely happy to categorise any dementia symptom as ‘aggression’, largely because I think the bluntness of that language helps to reinforce stigmatised views about people who are living with dementia, I hope the wording is forgiven in favour of some of the really important points in the blog that I wanted to put across in the most straightforward way possible.

5 – End-of-life care: A very personal story
Published in June 2012, this is easily the most difficult blog post I’ve ever written. Discussing my dad’s end-of-life care for the first time was very emotional, and I remember reading the blog back to myself for the first time after I’d written it and the tears streaming down my face.  

4 – Caught on camera
Published in October 2013, this is perhaps the most controversial blog post in my top 10. It explores the use of hidden cameras in care homes, a topic that remains hugely divisive to this day. 

3 – The voices of experience
Published in June 2013, I’d like to think that the inclusion of this blog post at number 3 in the top ten is testimony to the real groundswell of opinion that the voices of people with personal experience of dementia, whether they are living with a diagnosis of dementia or a past or present carer, should always be heard at any and every event about dementia. Sadly I think there is still a long way to go to make this a reality, but since I wrote this post things have moved in a more positive direction around including and valuing personal experiences. 

2 – So how much do you know about dementia?
Published in September 2012, this is another of my personal favourites, a blog post all about busting myths and challenging stigma. I’ve written about dementia awareness many times since this blog post, but the basic messages in this particular piece are as relevant now as they were then. Written before we had ‘Dementia Friends’ and some of the other high-profile awareness-raising initiatives, this was a real trail-blazer blog post for me, and one that I still see referenced on social media.  

And at number one…. 

1 – Hard to swallow
Published in September 2012, I honestly never imagined that when I wrote a blog on dysphagia (swallowing problems) that it would attract such a wide and extensive readership. I suspect the popularity of this post is testimony to the fact that trying to find out essential information about this common aspect of dementia care is difficult for both families and professionals alike. Nothing makes me happier than to know it has been so widely read, and judging by the feedback I’ve received the advice in this blog has been extremely helpful to numerous people from a wide variety of backgrounds.

So there you have it, my top ten most read D4Dementia blog posts. What this list tells me overall is that practical advice really reigns supreme when it comes to blogging about dementia. ‘Hard to Swallow’ isn’t at number one by a narrow margin – to put this into context, it’s been read by as many people as numbers 2-5 combined.  

Of the remaining ‘practical advice’ blog posts in the top ten, I’m not at all surprised to see my blogs featuring tips to keep a person with dementia hydrated and how to understand and cope with aggression are both really popular reads. Just missing out on the top 10 were my blogs on understanding how a person with dementia expresses themselves and how to promote continence and cope with incontinence, which only reinforces in my mind that readers really value the chance to explore our personal experiences as a family, alongside gaining tips and advice for coping themselves.

Of the remaining posts, to see end-of-life care at number 5 proves that a topic so many of us shy away from needs to be tackled, and of course from a personal perspective, to see my first major blog on family carers being so widely read is a real plus point for me. Dementia language and awareness were, I think, always likely to feature given the growing prominence of both issues, and dovetails rather neatly with the messages in my blog post about involving people with personal experience of dementia. Finally, of course, tackling a controversial issue like cameras in care homes inevitably draws attention – hopefully it has also helped to provide some clarity on a topic that divides opinions.

As this will be my last D4Dementia blog post of 2015, all that remains is for me to wish you all a very Happy Christmas and New Year. I hope the festive season brings you joy and many treasured memories. Mine will be my first as a new mum, and I will perhaps reflect on this next year. D4Dementia returns in January, with the first blog post planned to go live on Monday 11 January. 

Thank you for your amazing support during 2015. Here’s looking forward to 2016!
Until then...
Beth x

You can follow me on Twitter: @bethyb1886

Monday 7 December 2015

Harnessing the power of observation

I feel very strongly that one of the most important attributes anyone providing care and support to a person with dementia can have is the ability to observe.

In our helter-skelter, multi-tasking lives it’s easy to lose the quietly reflective quality of observation. Observation cannot be rushed, cannot be combined with anything else if it is to be truly effective, isn’t remotely technological, and may seem both outdated and old fashioned. Surely we need to be stepping in and ‘doing things’ to be providing optimum care and support – right?

Wrong! When you’re providing care and support for a person with dementia, whether you’re a family carer or a care worker, stepping in may well be the worst thing you can do. Of course we need to protect a person with dementia who might walk in front of a car, or burn themselves on the cooker, but in the vast majority of day-to-day circumstances talking a step back can be infinitely more helpful than getting involved.

One of the biggest problems people caring for a person with dementia often site is difficulties understanding the person. Those difficulties mostly arise because of limited or confusing verbal communication – the person with dementia is trying to articulate something, but the person listening to them cannot understand what they need or want.

Often the person providing support will then step in, make assumptions, and undertake an action that they think is needed. Sometimes they may have made exactly the right call, particularly if they are a family carer who has deep personal knowledge of their loved one or a care worker who has built up a really positive rapport with the person, but on other occasions the situation can rapidly unravel.

What then results is that the person with dementia doesn’t have their needs met (which is mistaken for them displaying ‘challenging behaviour’, something I wrote about here), and a vicious circle of frustration ensues for all concerned. With more finely tuned observation skills, it’s possible that such an unhappy episode could have been avoided.

Everyone who is providing care and support for a person with dementia wants to have that deep personal knowledge of the family carer, or the positive rapport of the studious care worker that I describe above. To get those levels of knowledge and rapport, however, involves many different skills, of which observation is a crucial one. 

Granted the family carer often has the benefit of years, if not a lifetime of knowledge about their loved one which, incidentally, is why family carers are so immensely valuable in society, but someone without that knowledge, like a health or care professional, can help themselves and therefore the person with dementia just by understanding the power of observation and interpreting the learning that comes from it.

One of the most widely recognised methods for enhancing dementia care, ‘Dementia Care Mapping’ from the University of Bradford, has observation as a founding principle. In CQC inspections, the 'SOFI tool’ is widely used – this was also developed by the University of Bradford and again is founded on observation. Meanwhile, observation features in the 10 facilitation skills that is part of the ‘Great Interactions’ training given to the staff employed by one of my consultancy clients, MacIntyre. 

So, far from being outdated or irrelevant, observation is actually a vital tool. It literally opens your eyes to what is really happening with a person, and is invaluable when a person’s dementia progresses and you need even more finely tuned skills to help provide them with optimum care and support. The reason it doesn’t feature in care settings as standard practice is that it is time consuming.

We all know how over-stretched social care staff are, and many providers simply do not staff their shifts to allow care workers to take time to observe and reflect upon what they are seeing. Budgetary constraints really are the enemy of observation, as is the need to ‘look busy’. You simply cannot ‘look busy’ if you are observing a person carefully and accurately.

What you are likely to learn from observation is immense, however. Good observation skills can tell you how a person is feeling, what they want or need and how you can best respond to them. It can also give you clues to their personality, their likes and dislikes, and the ways in which you can seamlessly integrate yourself into their life without being obtrusive, interfering and controlling. 

Observation is fantastic at promoting independence, but the very essence of good observation is about watching rather than doing. We are far too fond of doing things to or for people, without giving them the space and time to potentially accomplish those tasks themselves, or indeed go some way towards accomplishing them.

What observation isn’t is the tool of those who want to stare at a person with dementia. People with dementia deserve dignity and respect, not to be treated like exhibits in a zoo.  Observation should always be discreet, and with a clear objective of improving your understanding of the person with dementia to optimise their care and support.

Equally, observation isn’t the tool of the individual who doesn’t want to help a person with dementia who is in distress or struggling to accomplish something and becoming rapidly more frustrated and unhappy. It should never, ever, be used as a weapon of torture, where you are deliberately leaving the person to ‘get on with it’ regardless of whether they are able to do that or not. 

Making that judgement call is largely about the personality of a person in a care or support role. Those who observe most effectively are kind, compassionate individuals who instinctively know when to observe, how to reflect on that observation, and crucially when to intervene.  To some extent that judgement is also influenced by the culture of any organisation that person is working for. If the culture of the organisation encourages its workforce to observe, learn, reflect and adapt, and recruits workers with the values I outlined above, then observation becomes a regular, seamless part of the care and support being provided. 

What applies across the board, however, is that without observation a person with dementia will never be truly understood by those around them, their care will not be person-centred, and they will not have the freedom to express themselves or exercise their independence. That, I’m sure we could all agree, isn’t a life anyone would choose, so next time you’re with a person who has dementia think about how effective your observation skills really are.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886