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 décor 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...

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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...

You can follow me on Twitter: @bethyb1886
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