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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Do something new... with entertainment

Welcome to the fifth of my seven blog posts for UK Dementia Awareness Week 2015.

This year's Dementia Awareness Week centres around the theme of doing something new for people with dementia, under the mantra that ‘Life doesn’t have to end when dementia begins’. For many people living with dementia in care homes, however, a lack of opportunities to have meaningful occupation and activity, or even just enjoy the simple pleasures that many of us take for granted, can lead to life feeling like it really has ended.

Over this Dementia Awareness Week (DAW2015) I want to look at some of the positive things relatives and staff can do to enhance the lived experience of people with dementia in care homes. They may be new things, or they may be old favourites, but they all share in the ability to turn a boring day into something a little bit more special. 

Day 5: Entertainment

Following on from yesterday’s blog post on learning and education in care homes, I wanted to pick up the specific themes around entertainment and expand on those. So much of ‘entertainment’ in care homes is a blaring TV (or many blaring TV’s), often with people sat in front of them who honestly look like they would rather be anywhere else than in that chair watching daytime TV.

Yet entertainment can be so much more than the bog-standard. Box sets of favourite films can recreate a movie theatre experience, book clubs and storytelling can enliven the creative juices, drama and theatre groups (either external local groups or a group made up of residents, relatives, friends and staff) can bring stories to life, visiting instrumentalists can provide evocative memories of learning to play an instrument, big sporting events can join people with different allegiances together in friendly banter, board games and other traditional forms of entertainment can be wonderful for reminiscence, and a visiting choir, or indeed a choir made up of people who live and work at a care home, can not only make beautiful music but help to form bonds and friendships over music. Some care homes have even successfully integrated video game consoles into the options they offer their residents.

If you are going to invite people into your care home to provide entertainment, first of all find out if they are offering something that no one else you know does (there will be lots of untapped talent amongst residents, relatives and staff!), and secondly think broadly. Singers of different genres (not just an Elvis impersonator), circus entertainers, dog show demonstrators, the list is a long one, and don’t forget to make enquires amongst different cultural leaders in your community – the UK is very diverse and there are some fantastic forms of entertainment specific to different cultures that you would otherwise need to travel to far away lands to experience. 

And remember, the only limit to doing something new with entertainment is your imagination.

More information, tips and advice on entertainment can be found in the following D4Dementia blog posts:

Singing from the same hymn sheet: http://d4dementia.blogspot.co.uk/2012/05/singing-from-same-hymn-sheet.html

Remember, remember: http://d4dementia.blogspot.co.uk/2012/10/remember-remember.html

Next post on 22 May 2015.
Until then...

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Another world

As anyone with experience of dementia will know, it is a disease that plays tricks with the mind. Sometimes those tricks can be fairly innocuous moments where clarity of thought is absent. They can be mild and pass almost as quickly as they came, but for many people, my father included, they can come to define life during a particular phase of their dementia.

As a carer, developing an appreciation of and a strategy for helping with the effects of your loved one’s dreams, hallucinations, imaginings and other - almost movie-script-like - beliefs and visions isn’t easy. Short of setting up camp in the mind of someone with dementia, seeing what they see, hearing what they hear, and trying to make sense of it all from the point of view of someone with a brain that is working less than perfectly, I don’t think any of us looking from the outside in will ever truly grasp what dementia can make you see, hear or believe.

In my dad’s case, elements of reality were twisted into fantasy, leading to a bizarre period of a few years where he increasingly lived in a world that made absolutely no sense to us. We dubbed this 'eccentricity' at the time – only later learning that it was actually the workings of vascular dementia.

Dad started living in a world where he believed that he had formed ‘friendships’ or ‘feuds’ with certain people on TV. He never met them or contacted them, he just believed that he had a personal relationship with them that was, in his mind, either positive or negative. From there he progressed to believing that people in TV programmes were sitting in his lounge, and that what they were acting was really happening in his home. In the end we couldn’t even sit down in certain seats because ‘someone’ was already sitting there. He would put out food and drinks for these ‘people’ and we would be forbidden from touching it.

For dad, his dementia almost fed off of the TV – the people, scenes and actions were like fuel to his damaged brain, playing all kinds of tricks on him. I would be the first to admit that some of these tricks seemed to give him happiness and purpose, but others were much darker and more sinister, disturbing his equilibrium, his sense of worth, his understanding about where he was, who he was with and how his neighbours were behaving, and in the end it affected his ability to sleep, eat or even leave the house.

Of course, since we knew nothing about dementia, least of all that he had it, we fell into the classic trap of trying to reason with him. We told him countless times that what he believed wasn’t true. We would attempt to demonstrate that it wasn’t true, that it was all just in his imagination, often leading to arguments. We would clear away the food and drinks he put out for these ‘people’, which only made him more upset and frustrated. In his mind he couldn’t understand why we weren’t making a meal for, or conversation with, his room full of ‘guests’.

These were the sort of ‘guests’ that never left however. Week after week, month after month, their presence only got stronger. It was a bewildering, frustrating and ultimately extremely strange period in all our lives. Looking back now, I can see so many occasions when we went wrong, when we could have handled situations differently, but then of course hindsight is a wonderful thing.

So how do you avoid the mistakes we made and help your loved one through what they are experiencing? First of all look around their home: TV screens and mirrors are commonplace and entirely innocuous in most homes, but when someone is living with dementia they can become the source of much angst. Think about lighting (both artificial and natural sunshine) - the way it reflects off of objects or creates shadows can play havoc in the mind of someone with dementia. Patterns on furnishings, floor coverings, wallpaper or even plates and cups can also fuel the imagination in a very disturbing way.

Dealing with the tricks the mind can play in someone with dementia can be very exhausting and at times utterly baffling. When you have a loved one who has dreamt that they are lying on a beach in the Caribbean and now wants to go outside in their swimsuit in a freezing gale, it is very tempting to tell them not to be so ridiculous. Likewise, if they are spending the entire day terrified that they have murdered someone as a result of a nightmare that they have had (and are now too petrified to do anything, including sleeping), patience can run very thin on the ground.

Ultimately reassurance about anything troubling your loved one is vital, remembering that arguments are futile and very counterproductive. Avoid contradiction since it will often make the situation more distressing. If possible, encourage the person with dementia to talk about what they are experiencing and make sure that you listen carefully to what they are saying. From this, try and gain an insight into what is happening to them and think long and hard about how you could implement changes within their environment or routine that might alleviate what they are seeing, hearing or believing. Think about keeping a log of their experiences – are they connected to a particular time of day? Consider vocabulary issues too - is what your loved one describing to you not so much what they are seeing, but their description of something that they cannot remember the correct word for? Finally, eliminate any illnesses, emotional disturbances, medication side-effects or problems with vision that could be contributing to what they are experiencing.

Stepping inside the world of someone with dementia often takes courage and resilience, and never more so than when you are dealing with a situation that, whilst it is the centre of your loved one’s life, you cannot see, hear, touch, smell, taste or feel it yourself. As someone who knows and loves them, however, you are uniquely placed to help them through a huge challenge for you both.

Until next time...

You can follow me on Twitter: @bethyb1886

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Getting technical

How many times have you forgotten your pin number or tried to work out what an abbreviation in a text message means? How often have you cursed technology for presenting you with what appears to be an insurmountable problem, declaring that we were all better off when we only had pens and paper?

Imagine then if you can only remember a life of pen and paper, and modern technology is an alien concept. For people with dementia, an abbreviation in a text message could remain utterly unfathomable permanently. Having to remember a pin number could end your ability to go out shopping with a card that in theory provides access to your money, but only if you can remember those magic digits.

As dementia progresses, telephone calls can become problematic because you need visual clues to be able to communicate to the best of your ability. Even trying to operate a TV remote can leave you frustrated and bewildered – so many channels, so much choice… maybe too much choice. The world can become an increasingly isolating and unfamiliar place when your mind no longer helps you to process information that the rest of us take for granted.

Many of these problems stem from living in a faceless society. We communicate less and less in person – if an email or text message will suffice it is often quicker and easier. We use numbers to keep our cards secure when once a simple signature would have been all that was needed to purchase goods. Many shops now expect you to serve yourself when you want to buy something. We are encouraged to bank online, but again this involves remembering the right answers to get through the security. Even making a phone call regarding a service can leave you wading through those dreaded selection menus, unsure of which button to press – if you can even recall what all the options were.

How do people with dementia cope? The answer is with great difficulty. If you are fortunate enough to have a loved one caring for you, much of the burden of running the affairs in your life (be they financial, social, or simple household matters) will, over time, fall to them, which in the case of financial affairs often means going through the complex processes of Power of Attorney (if you are able to facilitate this). That is not to say that you necessarily want to lose control over your life, just that the systems within our shops and services are not, at present, widely adapted to help people with dementia to remain in charge of their affairs.

Thankfully the Dementia Friendly Communities initiative is involving leading companies in trying to understand how they can modify their systems to help people with dementia. Let’s hope they can grasp the scale of these problems, the debilitating effect they can have on daily life, and find ways to modify how they run their businesses to help people with dementia to keep their independence for longer.

But what about the more basic problems like using the telephone and operating the TV? Making devices simpler is one solution, but ultimately someone with advancing dementia will often come to rely on those nearest and dearest to them to help with their communication and entertainment needs. Proof, if it were needed, that nothing can really beat human contact.

So can technology and dementia ever really be happy bedfellows? You might think that is unlikely, but as awareness of the needs of people with dementia grows, there are plenty of companies looking to innovate products that can provide real 21st century solutions that benefit rather than baffle people with dementia.

Of course they won’t work for everyone – after all the best dementia care is about focusing on the individual and what is right for them. It's also unlikely that one piece of technology in isolation will be useful for a person throughout their entire life with dementia. Nevertheless, I think my dad would have benefited from a little technology in his life, not least a device that could have alerted us when he collapsed at home, and prevented him being left on the floor all night. Equally, technology that could have provided the kind of support and peace of mind that might have kept him living in his own home for longer would have been a plus point.

So, sometimes technology can be a positive thing for people with dementia, and indeed sometimes it is actively embraced by those living with the disease. Take for example how some very inspiring people who are living with dementia are communicating their journey through blogs and social media. It always reminds me that for everyone I meet who tells me they don’t understand social media and "could never blog" there are some people, facing huge challenges with cognition, who find a way to break down those barriers and get their stories out there. For them, getting technical is a lifeline, and for us it means we can learn from the REAL experts in dementia.

Until next time...

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Singing from the same hymn sheet

Me singing to my dad, July 2011

Improving the quality of life for people with dementia, especially in the more advanced stages of the disease when they may have very limited communication or ability to do anything for themselves, is one of my biggest passions.

Over the many years of my father’s dementia we tried numerous different therapies to improve his wellbeing and engagement, and by far the most successful was music. It helped that he had adored music his whole life, right from when he was a chorister at Cathedral School through to my childhood when his strong, perfectly tuned voice would rise above everyone else’s at Sunday church services. For a family so vociferously against chemical cosh drugs, music was the naturally therapeutic choice for my dad.

When my father went into his first care home, like most families we got him a TV for his room, but very soon afterwards it was broken, a godsend for dad as he no longer had to sit and watch mind-numbing rubbish that he had no concept of. He still watched his favourite sports and old films on the big screen in the communal lounge, but his room became a haven of music thanks to his CD player and all the albums he amassed via Christmas and birthday presents.

Our approach wasn’t without its teething problems. We went through a phase of having to continually remind the staff not to put the radio on, as the CD player was there for dad to listen to his music, not for the younger generation to enjoy the local station blaring out modern pop tunes, but otherwise I can honestly say that the CD player was pretty much the finest thing we ever bought dad. In fact it was used so much that we actually went through three machines in the eight and a half years dad was in care.

When my father’s dementia progressed to the point where he had very little conversational ability, and latterly could say no more than a word or two, he would still listen to songs and say the lyrics at precisely the right time, proving that not only did he still know the words but he knew exactly where they fitted within the song. Dad’s expressions and reactions showed how much joy, comfort and pleasure music brought him, and you cannot ask for more than that when you are caring for someone with dementia.

Seeing the effect music had on dad persuaded me to use my singing training to go into other homes, and in 2011 I did 35 gigs in care homes, all of which had at least some audience members living with dementia. My experiences paint a very mixed picture of how different homes and providers approach music therapy sessions. Some welcomed me with open arms, their staff engaged with my show and as a result supported audience members to gain the maximum from having me there. Others used my arrival to simply dump their residents in chairs around the edge of a dimly lit room, with the hardest of hearing placed the furthest away from me, close the door, and leave me with my audience while they went to have a coffee break.

Despite most relatives wanting extensive activities programmes for their loved ones in care homes, and the availability of external entertainers and specialists to come in and supplement that, sadly it is often an under-funded area. The experience I had is that whilst my shows were very well received, activities organisers were unable to re-book me, or indeed anyone else, as either their budget had been cut or they had to fundraise.

Activities like music, art, exercise and reminiscence are vital for people with dementia, and yet they are neither valued nor supported by many care home operators, including some of the biggest companies in the country. It is often seen as easier to just sit residents in front of a TV and leave them there.

There is also a huge lack of understanding about how something as simple as putting appropriate music on can change the atmosphere amongst residents. It infuriates me when care homes play modern pop music to their residents when they could be playing music that will offer residents the chance to reminisce. Hospitals with agitated patients could use less chemical coshes if they were more innovative with music therapies. On one of my father’s hospital admissions we were fortunate enough to be given a side room with a CD player, and having brought in some of his favourite music, the change in his mood was phenomenal.

Music therapy isn’t just for people in the latter stages of dementia either. I am now involved with the Alzheimer’s Society ‘Singing for the brain’ programme, which is a fantastic initiative that provides a supportive and sociable group where people living with dementia can come with their carer and ‘sing to express, not to impress’. The focus is on joining in, feeling engaged and improving wellbeing, not on auditioning for X Factor!

Seeing the faces of everyone in the group light up with different songs and styles of singing is hugely rewarding. It reminds me so much of the work I did last year, and how groups of sleepy, agitated or incoherent residents were transformed into mini choirs when I started singing songs they loved. Some people even got up and danced, and in one home a relative told me that she had never seen such an amazing atmosphere.

In my view all care homes should provide ‘Singing for the Brain’ type sessions as a mandatory service, and the huge availability of digital music and MP3 players should promote further, more personalised, engagement for residents. I have read really interesting stories of iPod’s being used very successfully in care communities in America, and the UK needs to catch up with these technological advances. Given the fees being paid by care home residents across the country, this should be just the tip of the iceberg in terms of innovation in how therapeutic dementia care is provided.

Until next time...

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