Monday 16 December 2019

Resolve to ask people with dementia what THEY want

With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. For my last blog of 2019, I want to look at how we listen to and respect the viewpoints of people with dementia.

In July 2015, I wrote a blog post entitled: 'Why don't we listen to people with dementia?'In that blog I said:
“If we are ever to move beyond stigma and discrimination and towards a truly world-class model of support and care for people with dementia, then giving people with dementia a voice and listening to what they have to say really is the only place to start.”
It was, therefore, with some amazement that I read a report about the UK Dementia Congress debate last month entitled, ‘Environmental lies in care homes play an important role in delivering person centred care’. The Journal of Dementia Care said the following about the debate:
“When can you lie to a care home resident? It was a hotly contested issue at UKDC last week, where delegates debated the use of “environmental lies” in care settings, such as fake windows with painted views, “bus stops” to which no bus ever comes, and disguised doors. “As a person with dementia when I go into a care home I do not want them to lie, either in the environment they create or in their actions,” said Keith Oliver, who opposed the motion that deceptive d├ęcor can play an important role in delivering person-centred care. It was an impassioned performance from Oliver, who has young onset dementia, which helped sway the audience from favouring environmental lies at the start of the debate to being firmly against by the end. But independent nurse consultant Lynne Phair, fought valiantly in favour of the motion and said there could be a therapeutic value in meeting the person with dementia in their own reality. Phair added: “Environmental lies must be used wisely.” But there was a resounding victory for the motion's opposers – also including Professor Graham Stokes – who had 54% of the audience behind them by the end (compared with 33% at start), while the proposers – also including family member Catherine Naj Dyke - had 37% on their side by the end (40% at the beginning).”
For me, the quote from Keith Oliver says it all, and frankly not only would I have supported Keith had I been at the debate but I wouldn’t have had the temerity to argue against him (which would make me a useless debater!) even if I felt fake environments were a good idea (which I don’t) for one simple reason - He is living with dementia, I am not. My natural standpoint is to show deference to any person living with dementia, putting aside my personal viewpoints and remembering what my dad always told me: “Respect your elders and betters.”

Keith’s views, I suspect, are echoed by many people living with dementia, including the numerous individuals who are living with dementia in care homes and largely don’t have a voice. From my experiences with my dad, I know he found the fake letterbox, door knocker and doorknob put onto his care home bedroom door utterly baffling, and why wouldn’t you? They didn’t function as these items normally would, and they seemed to have been added purely for decoration following a dementia consultant being engaged to ‘improve’ the environment. Sadly, what this consultant didn’t factor in was the amount of confusion and frustration such changes would cause.

In my work with care homes, I have never advocated for the implementation of fake environments. I have always felt, and seen this borne out numerous times, that if the care and support is good enough, if staff really understand dementia and are well trained and supported in their work, then the needs of residents living with dementia will not only be met but continually exceeded.

The money spent on fake environments, which is often considerable, is always likely to be better spent investing in staff. It is people that make the difference in dementia care, nothing is more important than the human element, and to reinforce this I go back to the point I made at the National Care Forum (NCF) Managers Conference last month, and which was reported on by the NCF's Nathan Jones
“A hotel environment is just window dressing if the care is not there.”
The type of environmental changes I support are based on bringing the person’s life story alive. I love to see environmental life story work that enables people to be reminded of things in their lives that make them happy or proud. After all, most of us like being surrounded by family photos, mementoes from holidays, and career, hobby, sporting or musical passions or achievements. Most people fill their homes with items that are personal to them, and that is the most apt way to create a supportive environment for a person living with dementia. Even if it’s only within their own bedroom in a care home it is better than the stark, plain, hospital-like rooms that so many people with dementia exist in within care homes, and certainly better than deliberately introducing items or decorations that depict something utterly fake. 

As I said in my September 2016 blog, 'Life story work - The gift that keeps on giving':
“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.”
So, if you run a care home and are planning some environmental changes in 2020 (or beyond), resolve to: Find out what people living with dementia actually want (ask them! And if the people you support aren't able to help, contact organisations like DEEP or Dementia Alliance International), prioritise life story work for anyone you support who wants to participate in that, and always keep it real, not fake.

Thank you for all your support in 2019. Until 2020...
Beth x

You can follow me on Twitter: @bethyb1886
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Monday 18 November 2019

Together we can do SO much

With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at improving care and support.

In October 2014, I wrote a blog entitled 'Inspiring end-of-life care'. In that blog I talked about my experience of speaking at the Alzheimer Europe Conference about my dad’s end of life care:

“I hope that the standing ovation my presentation received is proof that my dad’s story can inspire better end-of-life care for other people in the future, and that speaking about even the most difficult topics can be warmly received if you connect with people on a human level. And that is perhaps the most important message of all: we have great caring qualities as human beings that have the ability to change lives at every stage of life, even at the end.”

Photo credit: National Care Forum Managers Conference 2019
It is that ability to change lives that was at the forefront of my most recent speech, delivered to the National Care Forum (NCF) Managers Conference earlier this month. Entitled ‘Being a Change Maker for Family Carers’, my speech charted the nine years that my dad spent in care homes. I then went on to talk about the lessons that could be learnt from my dad’s experiences (and ours as a family), and the actions care providers can take to facilitate the person and relationships centred outcomes that are at the heart of care and support.

I want to share some of what I spoke about in this blog, just as I did in my ‘Inspiring end-of-life care’ post, for anyone who wasn’t at the NCF conference and indeed to remind those who were there what I talked about:

Lesson 1) Choice is important

“In the aftermath of dad’s diagnosis, when he was still in hospital, we were given no option to explore homecare or live-in care. I’m not saying we would have definitely chosen those options, but I advocate now for choice in care provision because I believe it is a fundamental right. Families should know about all of the options and ways found to facilitate their preferred option rather than being told, as we were, that there is only one option.”
Lesson 2) Understand and empathise

We had no idea what to look for in a care home and what the ‘right’ questions were to ask - we didn’t want to choose the wrong service through ignorance. Simply knowing you want the best care for your loved one isn’t enough knowledge to make an informed choice.”
Lesson 3) Build Trust

“The problem with trust in social care is it’s very fragile. We trusted the staff, but many of those staff were bullied into leaving when the successor to Southern Cross took over the home. Over the years, we’d trusted owners who promised to invest, but none really did what they promised. The last owner destroyed all trust by investing in the environment rather than the people. And of course it’s people, it’s the quality of that human factor that is so important. A hotel environment is just window-dressing if the care and support just isn’t there.”
Lesson 4) Recognise needs

“We talk a lot in social care about needs. But what about the needs of family carers and families? Perhaps most notably is the need to feel listened to and understood…For many family carers in particular, their needs will also include the need to be partners in care. 

I think it’s important here to also consider what care providers need….I would suggest that most care providers would say they want their staff to be treated with respect, to be told at the earliest opportunity if there are problems and be given the chance to rectify those issues, and for communication to be open and honest.”
I finished my speech with this quote from Helen Keller:
“Alone we can do so little; together we can do so much.” 
My speech didn’t end with a standing ovation, but if anything it was better than that, because so many people came up to me afterwards to thank me, talk about what I’d said and tell me how they would be aiming to implement some of my actions. In the days since the conference, I’ve had so many social media and email messages expressing similar sentiments. A compilation of some of the feedback I’ve received is on my website and this blog from the NCF's Policy, Research and Projects Officer, Nathan Jones, also includes a review of my session.

In the 7+ years since my dad died and I’ve done the work I do now I’ve never felt I inspired an audience so much, potentially becoming the catalyst for positive change within numerous social care services. It’s led me to the conclusion that whoever we are, we all have the power to be change makers. 

In social care services, it isn’t just managers and care staff, but ALL staff who can be change makers. In wider society, from bus drivers to bin men, nurses to beauticians, researchers to supermarket checkout staff, we can all be the change we want to see. 

For me that change is a society that comprehensively supports everyone who needs social care (electioneering politicians take note!) and that, specifically in relation to people with dementia, ensures that rather than providing care that I can pick apart, find lessons to learn from and actions to implement is simply a celebration: of doing anything and everything that makes a person’s years with dementia the very best they can be.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886
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Monday 21 October 2019

Being a good listener

With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant and updating them with some of my more recent experiences. This month, I want to look at the communication skill of listening.

I’ve written about communication a lot on D4Dementia, most recently in my January 2019 post, 'Communication - It's more than just words'. In that blog I highlighted non-verbal communication skills and observation as two important facets of effective communication.

In this blog I want to build on those themes and look at listening as a vital communication skill. Listening as a skill runs throughout all of my training but particularly in my communication module which includes a learning point of ‘Talking and listening’.

Do you REALLY listen?

It’s always interesting to challenge learners by asking them how good they believe they are at listening. In my experience, most of us believe we are good listeners, when in actual fact we aren’t but fail to recognise this deficit in ourselves. This is partly because although listening is taken for granted, there is a stigma attached to not being a good listener, with poor listeners often considered to be disrespectful. Therefore most of us want to believe we are good listeners even if we aren’t.

But what is a ‘good listener’ exactly? To listen properly, you need to shut out all other thoughts and distractions and really concentrate on the person. That is easier said than done, however. Multitasking is considered a prized skill, but while there are many things you can do simultaneously, good quality listening requires more concentration than a multitasking person can provide. 

Once you’ve concentrated on the person, your listening is then about more than just being a listening ‘ear’. Whilst our ears take in the sound (or perhaps struggle with this if we have a hearing problem, as I wrote about in 'Missing the morning chorus - Life with hearing loss'), the interpretation happens in our brains - a busy head with numerous thoughts isn’t going to be a listening head. Our body language can also help or hinder our listening. If we are fidgeting, fiddling with our hands or glancing around we aren’t really concentrating on the person we should be listening to.

Listening in dementia care

When a person is struggling to communicate, you need to listen very carefully to pick up on any clues that can help you to understand what the person wants you to know. Communication can include sounds and noises that aren’t words and may not immediately resonate with you. This can result in the listener losing focus or interest pretty quickly, mostly because we are conditioned to wanting to understand things rapidly and easily.

Hence why, in dementia care in particular, high quality listening is so important. Appreciating that you’ve not immediately understood what you’re hearing but persevering regardless is vital to pick up clues that can help you to unravel what you are hearing. With time and patience you will often discover far more than you might originally have expected to.

So, that’s listening in a nutshell, but what about people who fall between being a ‘good listener’ and a ‘poor listener’? 'Partial listeners' are everywhere - those of us who concentrate to begin with before starting to formulate our answer and response, but in the process fail to listen to the rest of what is being communicated to us.

I saw this on social media recently, and for me it really sums up one of the biggest problems around listening.
Listening and responding as a care provider

The danger with being a poor or partial listener is that our response may end up being entirely inappropriate. Responsiveness is considered to be so important that it is one of the CQC Key Lines of Enquiry, so any care provider who isn’t creating a culture where they are really listening to the people they support and their staff isn’t likely to be one who is responding well either. As I said in my 2016 blog, 'Is your workforce person-centred?'
“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.”
Genuine listening isn’t something that many organisational structures support well, but I’ve seen a couple of examples that I’d like to share with you:

·        My first example comes from a care home, who wanted to ensure that they were really listening to their residents. They’d had suggestion boxes, feedback forms, resident meetings and a managerial ‘open door’ policy for many years, but they were concerned that these were piecemeal listening exercises. The suggestion box was rarely used, feedback forms often contained the same information (and weren’t always completed), the gaps in-between meetings didn’t reflect the need to listen on a daily basis, and only a few residents would regularly seek out the manager.

So, they implemented a new element into their working week where senior staff would, between them, visit 4 residents per day for protected time when they would just listen. As a result they discovered all kinds of information, including ideas for service improvements, dissatisfactions, information about people’s life stories, things they wanted to do, and even plans for their end of life. It was priceless information that they’d never discovered from any other ‘listening’ exercise.

·        My second example comes from a homecare agency, who were concerned that they weren’t listening to their staff enough simply because of the nature of their care workers’ remote working. When they had team meetings these were often jam packed with agenda items - staff attending were talked to a lot by managers, and it was assumed that they were listening, but there was sometimes precious little chance for each individual to have their say and be listened to.

So, they decided to implement a meet and listen with an external facilitator. Once a month they would have a meeting and managers wouldn’t say anything initially. Staff members would take it in turns to speak, and no one else could speak when that person was speaking. Managers would then be quizzed, randomly, at the end of the meeting by the facilitator, to ensure that they had been listening and to say how they would respond to what they’d heard.

For both of these services, the benefits of really listening became apparent very quickly. They also helped to bring home to frontline staff how vital a skill listening is, which of course had fantastic benefits for the people they were supporting too.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886
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Saturday 21 September 2019

Myths and lessons

With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at awareness.

My first D4Dementia World Alzheimer’s Month blog in September 2012 was entitled, ‘So how much do you know about dementia?’ In the blog, which remains one of my most popular to date, I sought to bust myths about dementia and talk about what dementia had taught me. The myth-busting is particularly interesting to look back on as the blog was written before Dementia Friends - one of the key initiatives to raise awareness of dementia - was launched. Some of the messages from that blog went on to be incorporated into Dementia Friends and have become mainstream knowledge, but they are still worth repeating:
  • Dementia is not a normal part of ageing (types of dementia are caused by diseases of the brain). 
  • There is so much more to dementia than just forgetting things (dementia symptoms are multi-faceted, vary hugely and are individual to each person).
  • Dementia doesn't just happen when people get older (young onset dementia, defined as dementia in someone under 65, is increasing and dementia can even occur in children, although this is rare).
  • People with dementia are still people, not a disease. 
  • Dementia is not contagious. 
  • Those living with dementia still want to lead active and full lives and not be locked away and forgotten about (most people want to be cared for at home, not in communal establishments).
  • People with dementia can make a positive contribution to society if supported to do so.
  • You can live well, or live as well as possible, with dementia.

I followed the myth-busting with some personal reflections about what my dad’s dementia had taught me:
  • To appreciate the smallest things in life, since they become extremely precious (a simple “Hello” from my dad in his final few months brought a massive smile to my face). 
  • To make the most of every day (good days and bad days become an ever-present feature with dementia, and when the good ones come along you want to make the most of them). 
  • To never give up (yes there isn’t a cure yet, but there is a lot you can do to make someone’s life with dementia a more positive experience than it would have been ten, twenty or thirty years ago). 
  • Finally, in my case, to share our experiences with the world (everything my dad went through is there to inform, educate and influence others. He would have wanted to make a real and lasting difference, and hopefully through me that will be his legacy).

Despite there being seven years between writing that 2012 blog and today, and a multitude of other experiences gained primarily through my work but also from people I’ve known personally, I cannot better those last four points - they sum up so much of what I talk about regularly. 

Appreciating the smallest things in life feeds into the principle of taking notice, one of the Five Ways to Wellbeing that have been pioneered by the New Economics Foundation and are widely recognised as key aspects of supporting good mental health. In 2012 I gave the example of my dad saying a simple “Hello” to me in the last months of his life, but I’ve since heard about even more precious, seemingly ‘small’ moments, not least a lady whose husband (who was living with dementia) told her he loved her - quite unexpectedly as he wasn’t given for such proclamations she said - just hours before a major stroke left him unable to speak another word for the rest of his life.

Making the most of every day was, in my dad’s case, particularly notable when we were supporting him in things that reflected the happiest memories from his life. Examples of that included listening (and singing) to music he loved, looking at books he’d enjoyed in his life (including reading a poetry book about love in the last days of his life), enjoying favourite foods (roast beef), or talking about some of his favourite memories of his life and looking at items that reflected those, which in my dad’s case were his notable achievements as a farmer. We, of course, knew my dad’s life story and so were able to facilitate all of this interaction, but for professionals currently supporting a person that they don’t know as well I would wholeheartedly recommend life story work – it really is the gift that keeps on giving.

Never giving up for me means being really person and relationship centred in your approach to supporting the person. If you spend a lot of time focusing on the big picture of dementia (the minimal treatments and lack of a cure) and the stark reality of dementia as a progressive and terminal disease, you can very quickly feel like giving up. Whereas if you get back to thinking about the person, what might make their life happier or more comfortable right now, you can find a sense of positivity and achievement. A classic example of this comes from a gentleman I met who every Friday would bring 3 roses to his wife in her care home. I was curious as to the significance of the day and the number of roses so I asked him. He said the roses (which always had to be different colours) represented their 3 children, all of whom had been born on a Friday. He said his wife couldn’t remember their names now, so the roses (roses were his wife’s favourite flower) had become her way of feeling close to her children (two of whom now lived abroad). She would hold, caress and study each of the roses and they’d have conversations about ‘red’ rose, ‘pink’ rose and ‘yellow’ rose, with him weaving in details about their children’s lives to make the conversation more meaningful.

Sharing experiences remains one of my greatest passions. Telling my dad’s story and the stories of the many other people I’ve met who are ageing and/or living with dementia is the most powerful way I’ve found in 7+ years to illustrate the health and care experiences individuals and families are having. I’ve seen first-hand how illuminating and inspiring personal experiences are for professionals involved in care and support, and I personally believe it should be mandatory for all dementia training to include these experiences. For this World Alzheimer’s Month, if you’re looking for some inspiration beyond this blog hunt down one of the many blogs, books, films or recordings that people with dementia have made or contributed to and you’ll see why nothing beats hearing from those actually LIVING with dementia.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886
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Monday 19 August 2019

What right do you have?

With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at human rights and sectioning.

Back in December 2017 I wrote ‘Resolve to embrace human rights’which outlined basic human rights, the framework for making decisions and the principles that govern a human rights based approach. In that blog, I said:
“I talk about human rights during my training on living well, or living better, with dementia. Although human rights fit into every aspect of living with dementia, I think presenting them in the context of 'living well' sends an important message that human rights are vital to the persons quality of life.”
That statement remains as true now as it did when I wrote it. What I suspect has changed for many people with dementia is that the hope of living well, or living better, has been severely eroded with the UK’s continual cuts to services. Any notion that the human rights of a person with dementia are likely to be severely affected as a result of these cuts doesn't seem to register with those who make these decisions.

This is perhaps most starkly illustrated when a person with dementia is sectioned, depriving them of many rights, most notably their liberty. I'm on the record as being against sectioning for people with dementia in all but the most extreme (and I mean extreme) circumstances, as I wrote in my 2016 blog, ‘Sectioning people with dementia’:
“Fortunately my father was never sectioned, which is just as well since I am opposed to it in relation to people with dementia in all but the most extreme circumstances. When I say extreme circumstances I'm talking about where a person with dementia is violently unwell and every effort has been made, prior to sectioning, to utilise every other avenue of care and support available.”
Interestingly, my post on sectioning has become one of the most popular I’ve ever written on D4Dementia, something I would never have expected as I felt it was a bit of a niche topic when I wrote it and something that I hoped was only affecting a tiny minority of people.

Moreover, this popularity suggests to me (purely anecdotally and not scientifically) that this is a topic many people are concerned about or have experienced, and my email inbox backs that up. Since the post was published I’ve had numerous emails from adult children whose parents have been sectioned due to their dementia. They are bewildered, frightened and wondering what will happen next - and I’m talking about the sons and daughter’s emotions, so imagine how the mothers and fathers with dementia are feeling.

In addition, through my consultancy work I know of at least two people in different areas of England who have been sectioned - having been moved from care homes I’ve provided training for to other care homes (for reasons of geographical location) - as staff unfamiliar with these people and without the additional input I’d been providing felt that they couldn’t support these individuals.

Further evidence of instances of sectioning aren't hard to find - examples from a quick search include The Times in December 2018, ‘Dementia patients needlessly sectioned’ (subscription content), and the Daily Mail in May 2018, ‘Father, 71, with Alzheimer's is SECTIONED after a string of ten care homes refuse to take him in’.

For me, this amounts to showing that the cracks in the health and care system are all too obvious, either because families are struggling alone and unsupported or because some professionals haven’t been trained in non-drug therapy care and support techniques that can help a person who is experiencing more severe dementia symptoms, leaving sectioning as the ‘way out’.

I wrote an eBook for a client of mine, MacIntyre, all about Changed Behaviour, with lots of practical tips and advice that could help anyone, be they a family member or a professional. To expand on that further, I went on to write a series of 11 Changed Behaviour booklets that look at different ‘behaviours’ as they may be described (words like ‘aggression’ aren’t my preferred terminology but needed in this instance for staff to have a logical reference point), and again are packed full of practical, non-drug, non-restraint approaches that were approved by MacIntyre’s Positive Behaviour Support (PBS) team. Four of them have been published (I hope more will be in the future) and can be found under the following links:

These ideas and approaches aren’t revolutionary, but they do require the person practicing them to first and foremost believe in taking a compassionate, human approach that is based around supporting the person in their rights and pursuing the least restrictive option to support their symptoms. 

In my view, a basic education in dementia-related human rights isn’t hard to obtain - there are numerous resources that make a great starting point, including the Dementia Engagement and Empowerment Project (DEEP) booklet, ‘Our Dementia, Our Rights’ which states:

“The more we talk about and use the rights of people with dementia, the more our services, culture and attitudes will change for the better.”

Oh how that statement needs to come true, as Dementia Alliance International will attest to in all of the work they have done to raise the issue of human rights in dementia care. Sadly, the urgency of this work was further brought home to me back in May when I was invited to quote to provide ‘challenging behaviour’ dementia training including a learning objective ‘using restraint’. I cannot imagine any mention of human rights within such a training framework, and it seems in a social care context to be just a stone’s throw away from sectioning someone. 

Which leaves me to pose one simple question: If some care providers can offer first class, compassionate support that respects the person and their rights and would never require restraint, why can’t everyone? Or perhaps the more pertinent question to substandard care providers who aren't respecting human rights should be: What right do you have to take this approach?

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886
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