Coronavirus and living with dementia - Coping in unprecedented times

It’s not easy to know where to begin with a blog on the current monumentally uncertain times that the world is facing, but I’m going to attempt to address the coronavirus disaster (I don’t think the word crisis goes far enough) in this and subsequent blogs as we all try to adjust to the unprecedented circumstances we find ourselves in.

Firstly, way back (well it seems like a long time ago now!) when we first heard about this virus in December and as it escalated into January, it frightened me. Reports of the pneumonia it causes sent a shudder through me with vivid recollections of how my father - over a period of around a month - fought and died, drowning from the inside as his lungs filled with fluid. 

Anyone who thinks this is a trivial disease is so incredibly misguided and, in common with experts and governments around the world, I have one simple message: STAY AT HOME AND SAVE LIVES. 

I appreciate, however, that the fundamental change to the only way of life most, if not all, of us have ever known is a huge ask. I’m having to do it - currently self-isolating with my mum (who is 80) and trying to keep a 4-year-old entertained while I devote my working time to writing as all of my consultancy work is indefinitely postponed. It’s not easy, and if you are supporting a loved one with dementia, it will be even harder. 

I’ve been asked a few questions by families in this position over the last few weeks, and in this blog (and others) I will share my answers:

Help! How do we hand-wash more?

I know lots of people are struggling with this simply because A) a person with dementia may not remember to wash their hands, and B) even if the person remembers, they may be unsure of how to wash their hands or not do it with the thoroughness and for the length of time needed.

In his years living at home before his diagnosis, my dad struggled with personal hygiene, and although his care homes tried to remedy this, hand washing wasn’t frequent. Dad’s hands often looked dirty, even when he was about to be given a meal, mostly from remnants of old food or possibly even where he had put his hand into his incontinence pad. This was particularly noticeable once he was immobile.

So, this is a very real problem even before coronavirus magnified the need for scrupulous hand-washing. Some key points to remember to support a person living with dementia who is struggling with hand washing:

• Is it clear where the washing facilities are? Signage around the home can help the person to navigate their way to the bathroom or cloakroom to wash their hands. 
• Once inside the bathroom or cloakroom, is it clear where the basin, taps and soap are? Try to have contrasting colours to make it more obvious.
• Does the person know how to turn the taps on, how to get soap out of the dispenser, and do they remember how to wash their hands? Again, signage (pictures and words) can help to jog the person’s memory and support them to remain independent.

If the person is immobile, try what I used to do with my dad:

• I’d get a bowl of warm, soapy water and put it on a table in-front of dad or on his lap if he was calm. 
• We’d both put our hands in together, and using extra soap I’d gently wash his hands and wrists and scrub under his nails, taking my time and making it a relaxing experience.
• I’d then put dad’s hands into a towel, go and change the water for fresh, clean warm water and return to rinse his hands before doing a final dry on another clean towel.

It wasn’t a quick process, but very effective, especially for soaking off stuck on dirt, and from a sensory perspective it was lovely to both have our hands in warm soapy water together. I doubt from a virus prevention perspective it would be anywhere near as efficient as washing under running water as we’ve all been told to do, but if the person is immobile and it’s not possible to get them to a basin it would be better than no hand washing at all.

For a person with dementia who dislikes the feeling of water, hand sanitiser (with alcohol) is an alternative to hand washing. Sanitiser is, though, in short supply and I’ve had zero success finding any of this for our household.

Help! How do we self-isolate?

Many people with dementia will be living with other conditions like heart or lung problems that make them particularly at risk from coronavirus, or indeed their age will be a risk-factor. Avoiding developing this virus is by far the best policy, but self-isolation carries many challenges for a person who is already confused and frightened. My tips to support each other include:

• Avoid an overload of tension and a desire to ‘get out’ from all members of a household by having a consistent routine and lots of things to focus on each day. 
• Support a person with dementia to engage in hobbies they like or indeed to try new activities. If you need materials to support hobbies or activities, look online to see what can be delivered. Stores like Hobbycraft offer home delivery, but it will take longer than usual for your items to arrive (and of course there are lots of other arts and crafts websites too).
• An internet connection can be invaluable in terms of being able to keep in touch with family and friends via video calls or messaging, and so many services - like singing groups or exercises classes - are now being streamed online. These are at set times and are brilliant for helping to add structure to a day at home. Some other examples to try:
• Join the fabulous Wendy Mitchell for her ‘Web with Wendy’ sessions (the next sessions are 31 March and 2 April). Wendy says of these sessions: “I would like to invite you to a virtual cuppa on the web to discuss anything and everything....no questions out of bounds....”
• Participate in laughter yoga, designed to put a smile on participants faces during these testing times. Find out more about Everybody Laugh Together on their Facebook page. 
• Try some of the numerous virtual tours of museums, galleries, gardens and so much more in the UK and abroad. Do an internet search for the type of virtual tour you are interested in and be immersed in another world.
• You could also consider modifying some of the things we’ve been asked to do as a family:
• We’ve had requests for our daughter’s artwork to be sent to some of my care home clients - there is no reason why adult artwork wouldn’t be just as gratefully received. 
• My writing skills are being requested for everything from pen-pal services to life story research. Again, there is no reason why a person living with dementia at home, supported by their partner or family, couldn’t become a pen-pal for a person in a care home and mutually reminisce together.

Next month I will look more in-depth at how families can cope when their loved one is in a care home in isolation. Until then:

• Keep safe
• Stay at home
• Keep your distance from others
• Don’t panic buy
• Look after yourselves
• And stay well.

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Bothered and bewildered by the portrayal of dementia

The portrayal of dementia on TV and in the arts has undoubtedly risen since my dad was living with dementia. From major soaps to numerous stage plays, dementia - it seems - is popular subject matter.

I’m not against portraying dementia when it’s done in a fair and equitable way that, crucially, educates. When I say educates, however, I don’t mean in the usual awareness-raising way, or by opting for the predictably negative portrayal that is perhaps most closely associated with dementia on TV or in the arts.

My biggest gripe against the Oscar-winning Still Alice was the total omission of any examples that showed how Alice and her family could have lived better with simple environmental modifications. For example, signage that would have assisted Alice to get to the toilet in time in her holiday home.

My interest in the portrayal of dementia in the arts was ignited again last November when I went to see 'Bothered and Bewildered', one of the numerous stage plays focusing on dementia. The official synopsis of ‘Bothered and Bewildered’ says:

"This is a comedy drama about one woman’s struggle with Alzheimer’s. The play follows Irene and her two daughters Louise and Beth as the girls lose their mum in spirit but not in body."

Comedy and dementia

Those with a keen eye on language will find that synopsis somewhat troubling, and being in the audience was certainly an uncomfortable experience for me. I’ve often debated with myself how I feel about the use of comedy in relation to dementia, and this play laid bare those internal debates again.

Whilst many others laughed, I couldn’t and didn’t throughout the whole play. That’s not to say that I don’t appreciate that humour has its place in dementia care - I sometimes laughed WITH my dad during his years with dementia, but never at him. 

Often people with dementia do things that to those observing them are strange - in these circumstances the first human response is often to laugh to conceal our own lack of intuition and understanding. But look beyond what you're seeing to consider the reasons behind why a person is doing what they are doing and suddenly you think very differently. 

You feel sadness that the person’s damaged brain is leading them to outward expressions that barely conceal what is likely to be an internal turmoil of acute confusion. You might attempt to try and walk in that person’s shoes to imagine how they are feeling, knowing that you can switch off from that state of mind at any time, whereas the person is living with their dementia 24/7.

Supporting family carers

The dubious comedy element in this play wasn’t my most overwhelming feeling, however. More than anything I wanted to jump on the stage and help Irene’s daughters to understand their mum better and cope better as a result.

During the play Louise and Beth were immensely frustrated with their mother, didn’t know how to handle her paranoia and hallucinations, ended up looking for their mother with the police when she’d left the house in the darkness dressed only in her nightie, and felt driven towards seeking a care home place for her. 

The classic unpaid family carer scenario of trying to juggle work with caring responsibilities was also explored, with one of Irene’s daughters giving up work to try and care for her mother. The only professional support shown in the play came from a doctor, who for the purposes of the play asked far more questions than most doctors I’ve ever met. Despite this, however, he offered nothing by way of tangible practical support.

What needs to change

I accept that the portrayal of Louise and Beth’s struggles are entirely reflective of the experiences of so many families. Indeed, there were elements that reminded me of my experiences with my dad, but my frustration is that we don’t move forward from this.

In January 2020, every person with dementia and their family still cannot access universal, comprehensive post-diagnosis support, nor do they have access to their own Admiral Nurse, and most will find that care and support largely relies upon untrained and unsupported family carers until, more often than not, a crisis occurs and professional support is urgently needed.

It’s a disgraceful reality facing numerous families, and the portrayal of this element of a family’s experience of dementia in ‘Bothered and Bewildered’ is perhaps all the more striking when you consider that this play wasn’t written recently - it was first performed in October 2014, proving that so little has changed.

I’m sure that dementia will continued to be portrayed on TV and in the arts in the years ahead, hopefully not just by showing the difficulties, the frustrations and the sadness, but also by showing the environmental changes that can make a difference in someone’s home, the meaningful professional support (Admiral Nurses etc) that can enable families to cope better, and (fingers crossed) even progressive initiatives like peer support groups (DEEP and DAI) and training for family carers.

If we could have all of that, with less focus on laughing at the person living with dementia, we’d be making progress. 

Until next time...

You can follow me on Twitter: @bethyb1886
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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...

You can follow me on Twitter: @bethyb1886
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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...

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