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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The failure of post-diagnosis support

It’s not often that the content of TV programmes stays with me, but the recent BBC ‘Hospital’ series, following the fortunes of patients and staff at Imperial Trust’s hospitals in London, and ‘Granddad, dementia and me’ that I wrote about last month, both fall into that category.

Documentaries can teach us a lot, and even allowing for the selective nature of TV editing and the luxury of being a passive viewer rather than a stressed subject with a camera pointing at you, I feel it’s important that the learning from these two programmes isn’t lost.

The third episode of ‘Hospital’ featured two gentlemen living with dementia. Firstly we were introduced to Carl:

Narrator: “75-year-old Carl has dementia. His family brought him to A&E after he became aggressive at home. Yesterday morning he walked out of the hospital and was missing for 13 hours. The police found him wandering the streets alone and brought him back to A&E.”

Dr Barbara Cleaver, Emergency Medicine Consultant: “Three people to look after him at the moment including security because he is in an unfamiliar environment, it’s noisy, it’s bright, there’s lots going on. I suspect that’s really playing into his underlying diagnosis and making things much worse for him.”

Narrator: “For his own safety, Carl is being held in room Q, the space reserved for psychiatric patients.”

My alternative commentary would be:

“Carl, a gentleman living with dementia, was missing his wife who for her own health needed a break from 24/7 unsupported caring. Carl, confused and frustrated that he couldn’t find his wife, lashed out at those around him through no fault of his own, and without the skills and support they needed, family members took Carl to a place they thought he would be safe. Carl, however, became disorientated in this alien environment and went to look for his wife for reassurance and familiarity.”

Later, we were introduced to Stanley:

Narrator: “85-year-old Stanley has vascular dementia. This is his 4th admission in three months. Around 25% medical patients treated annually by the Trust have dementia. They are accommodated in a specialist ward until their social care can be arranged.”

My alternative commentary would be:

“Stanley, poorly supported in the community, has had repeated inpatient stays. At present Stanley does not require acute medical treatment, and would undoubtedly have lived far better with his dementia had his family and social care been properly resourced to support Stanley from his diagnosis onwards.”

Were Carl and Stanley featured because their stories are somehow usual? Sadly I suspect quite the opposite. Carl and Stanley are the norm. The failure in post-diagnosis support for people living with dementia and their families is something I have written about countless times. Not only is it a disgrace that families end up in the situations faced by Carl and Stanley, it is also a complete false economy.

My dad was diagnosed 14 years ago. Since then we’ve had numerous dementia-related initiatives from different governments and significant investment into dementia education for healthcare professionals via Health Education England. And yet we still have:

·       People attending A&E because it’s the only place guaranteed to ‘do’ something for them when their family can’t cope with ‘aggression’ or the person has been found ‘wandering’ (not my choice of language)

·       People with dementia being placed in rooms intended for psychiatric patients (that are not remotely dementia friendly)

·       Medical and security staff seemingly untrained in supporting a person with dementia (and loads of stigmatizing language)

·       People remaining stuck in hospital because care packages are so difficult to arrange

·       Family carers at their wits end, wanting to care for their loved one but utterly unsupported

·       No signs of dementia friendly environments (in people's own homes or health/social care facilities)

 

·       No mention of some of the good work that has been done to help people in hospital, like 'This is me' and John's Campaign.

Add in what we saw in ‘Granddad, dementia and me’ where the gentleman featured who was living with dementia, Tom, was drugged and sectioned, and overall in both programmes precious little sign of any choice, control, empowerment, peer support, occupation or activity, life story work and other non-pharmacological treatments, positive behaviour support or, frankly, anything I would be proud of (beyond the outcome shown in Tom story) and I honestly question how much REAL progress has been made in the last 14 years.

By the time a person attends A&E, there have potentially been numerous red-flags that the family needed support. A dementia diagnosis in itself is the first of these. Once things get so out of control that the person is in hospital (which is one of the worst possible environments for a person with dementia - it will only increase the person's confusion and disorientation making them upset and/or angry), the effect on everyone involved isn’t favourable.

Some simple preventative advice and support could at best avoid, or at least significantly delay, a person ever ending up in a crisis situation. Why do we not educate families, at diagnosis and continually thereafter, about (in no particular order):

·       Making their home dementia friendly

·       Accessing peer support and empowerment

·       Occupation and activity - The myriad of different options to keep busy and how to access them

·       Collating and using life stories and other non-pharmacological therapies to support a person experiencing changed behaviour

·       Training: For the person with dementia and anyone in the family unit who wants it. Knowledge is power for many people. Knowing what is happening in the person’s brain, how those changes could affect the person and ways of providing optimal care and support (including self-care for the person with dementia)

·        Carer resilience - Ways of coping, identifying when you aren’t coping and sources of support when you aren’t coping (that actually exist and respond)

Instead, as episode three of ‘Hospital’ concluded, we learnt that Carl was now being cared for in an acute mental health unit and visited daily by his wife, and Stanley was settling in well to his care home. Would either of these gentlemen have chosen these two places of residence? I doubt it. And from the perspective of the tax payer, both are very expensive options (Stanley’s care home costs £1700 a week, plus because of his ‘complex needs’, an additional £2300 for one-to-one care. It is funded by NHS Continuing Healthcare. We never learn what Carl’s acute mental health bed costs).

Worst of all though, is the cost in personal anguish for these two gentleman and their families. We’ve only very briefly dipped into their stories, but they represent examples being replicated every day of how a diagnosis of dementia can needlessly lead to lives unravelling, all for the want of a holistic, long-term package of what is comparatively low-level post-diagnosis support.

 

Ask yourself: For a country aiming to be the best place in the world for people with dementia to live, is that the best we can do?

Until next time...

You can follow me on Twitter: @bethyb1886

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I need you

In my 2013 blog post ‘What is dementia’ I focused on the symptoms of dementia, noting the following amongst my very long list of ways in which a person can be affected by dementia:

“An increasing need for reassurance (someone who was previously independent becoming clingy or losing confidence), or a need to be constantly reminded about things”

Back then, I wasn’t aware of the phrase ‘trailing’ or describing a person with dementia as ‘following’ others around. I literally just thought of the need to be close to someone you trust as a need for reassurance.

However, watching the recent BBC Documentary ‘Granddad, dementia and me’, the phrase ‘obsessed’ was used repeatedly to explain Tom (who is living with vascular dementia) needing to be close to his wife (and carer) Pam. Tom’s need to be constantly with Pam had, for Pam, got to a point where she needed some time away from Tom.

The film throws up numerous issues which I will explore in my August D4Dementia blog, but I think the need Tom had to be close to Pam, and the effect on Tom and Pam's wellbeing when they were happily reunited towards the end of the documentary, is a really interesting one.

From the perspective of a spouse or family member, if you are used to your loved one being fairly independent, the way in which dementia can leave a person without the confidence to be on their own can be difficult to understand, adjust to or successfully support. Many spouses or family members end up feeling suffocated and like they haven’t got a minute to themselves. This was very strongly portrayed in ‘Granddad, dementia and me’ which in the early part of the film really made Tom look - to someone without a good understanding of dementia - like he was a nightmare to live with.

Look behind the visuals a TV camera provides, however, and the story is a different one. Firstly, the changes in his brain caused by his vascular dementia (the same type of dementia my dad had) weren’t Tom’s fault (even with risk reduction, no one is guaranteed to not develop a type of dementia). These changes were even more baffling for Tom than those around him – unless you are a person living with dementia, you cannot possibly understand exactly what it feels like to be a person who is.

When things are happening to us that we don’t understand, the natural human tendency we have from birth is to gravitate towards someone who is familiar, who we trust, find comfort with and love. We want to know that everything is ok. And if we have an unmet need that we cannot articulate, the natural reaction is to search for someone who might be able to interpret this, which is most likely the person we are closest to in our life, usually our spouse if our parents are no longer around.

In parenting, this is a given. As mums and dads we accept and expect that our young child will seek us out when they need us, particularly if they don’t have the language to articulate their needs or the ability to meet them independently. Indeed, clinginess in a young child is otherwise known as the child seeing you as a ‘secure base’, with separation anxiety accepted as a natural part of child development.

I appreciate that in marriage this isn’t a given – you marry an independent adult and expect them to remain that way. But there is another way of looking at the reassurance a person with dementia needs from the person closest to them – You are their ‘secure base’. It is a mark of how strong your bond is that you are the person that your loved one needs to be closest to.

I’m not for one moment suggesting an adult with dementia is now a child – they remain an adult regardless of their cognitive impairment. But the narrative and attitudes we have towards happy and successful parenting, and the narrative and attitudes we have towards supporting a person who is living with dementia, are poles apart and children are definitely getting the better deal!

That is not to in any way undermine the huge efforts made by families around the world in caring for their loved ones who are living with dementia. I was appalled at the criticism of Pam and her family – yes, we can all spot mistakes from the comfort of our sofa, but when you are living the experience it is very different.

What I wish is that Tom, Pam and their family could have been shown receiving really proactive support to ensure that they could give Tom what he needed. The film showed that medicating Tom wasn’t the answer, and two periods as a mental health inpatient (including sectioning – my views on sectioning are here) didn’t help.

So what is general good advice for any family whose loved one wants to be with them 24/7:

Occupation and activity

One of the major features of the first part of Tom's film is how little he had to occupy himself with. He was never shown to have any responsibilities or daily tasks, meaningful occupations, hobbies or activities that he enjoyed – not a healthy situation for a person who’d been a high-achieving, hardworking businessman.

 

That is not to say that everyone who lives with dementia will feel motivated to do things, my dad certainly went through a period when he refused to do anything except watch TV and look at books, and many people with dementia develop depression alongside their dementia which can also contribute to not wanting to do anything, but presenting those opportunities and making them a consistent part of every day life is vital.

 

Disabling people when they still have capabilities is a disaster. Not realising the person still has capabilities is a double disaster.

 

Do things together

So, you might think that ideal occupations and activities are ones that the person does alone, but think again. The person may not know how to begin, let alone successfully complete, a task. Doing things together not only means you being able to guide the person, but it enables the person to model what you are doing – it’s a subtle activity that is often wordless, and may happen without you even realising it as the person watches and copies you. A simple but vital way to boost the person’s independence without them having to acknowledge ways in which they are struggling.

 

Get your environment in order

If the person can’t remember their way to the bathroom or the kitchen, they are more likely to rely on following you to find their way. Some dementia friendly signage and simple design changes can all help to augment the person’s independence – see the world-leading dementia design work from Stirling University for tips and ideas.

 

Be the voice of confidence and reassurance

You may well be tired of telling your loved one "You can do it", but dementia is a very big voice in a person’s life that, essentially, is trying to hold them back, making the person insecure, vulnerable and lacking in confidence. As the most trusted person in your loved one’s life, you have the ability to stop that juggernaut in its tracks (temporarily at least) by being a constant source of support, confidence and reassurance. As the Bette Midler song goes:

 

Did you ever know that you're my hero,

And everything I would like to be?

I can fly higher than an eagle,

For you are the wind beneath my wings

 

Accept the unsaid

Hard and exhausting though the need for constant reassurance and company may be, accepting three little words – that will most likely never be said out loud - can be transformative for your resilience.

"I need you" is what your loved one’s quest for reassurance and confidence is really saying. Take it from someone who was once that needed person, it may be hard at the time but it’s harder when you are no longer needed.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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Think about the ‘Dementia Words’ that you use

As this year’s Dementia Awareness Week rapidly approaches (17-23 May), I anticipate that there will be a surge in coverage related to dementia in the UK. Indeed, it was the start of Dementia Awareness Week in May 2012 that saw me begin D4Dementia, so I know only too well how inspiring this focused week of awareness raising can be. 

In amongst everything that’s written during this forthcoming high-profile seven days for dementia, I hope that the values of the 'Dementia Words Matter' Call to Action will be at the forefront of writer’s minds. It’s a Call to Action that I signed up to on the day it was launched – 20 March - and something that I am hugely supportive of.

'Dementia Words Matter' sign up board on launch day

The aim of 'Dementia Words Matter' is to ask anyone writing, reading or talking about dementia to Check, Change and Challenge the language being used to describe dementia. Signatories are being asked to use words that are accurate, balanced and respectful rather than extreme and sensationalist. In practice this means abandoning phrases like 'sufferer', 'burden', ‘demented’, ‘senile’, ‘victim’, ‘plague’ and ‘living death’ in favour of ‘person/people with dementia’, ‘person/people living with dementia’ and ‘person/people living well with dementia’. The misrepresentation of the word ‘dementia’ is also mentioned, as is the use of terms like ‘dementia patient’ and ‘service user’, and there is a request to consider using appropriate accompanying images rather than the usual generic pictures that often convey a very negative message.

The Call to Action is being led by the Dementia Action Alliance, of which I am a national member, and DEEP (Dementia Engagement and Empowerment Project). DEEP is a fantastic project that brings together people who are living with dementia to help ensure that their voice is heard at local and national levels, and it is the DEEP ‘Dementia Words Matter’ guide that has inspired this Call to Action.

One of the posters created to support the 'Dementia Words Matter' Call to Action

I recognise that to many people this may seem like simple semantics - I've heard individuals question why such campaigns even matter - but I have long championed the need to use language as a tool to help change attitudes, writing in March 2013 about my 'Trouble with the language'. As the ‘Dementia Words Matter’ literature points out;

“The language we use to talk about dementia influences how people with dementia are viewed and also how we feel about ourselves”.

If people with dementia didn't find words like 'sufferer' or 'burden' offensive this wouldn't be an issue, but many - not all - clearly do, and this is an incredibly easy change we can all make in how we write and talk about dementia. I also think there is a point around improving the lived experience for people with dementia - many ways of doing this are complex and time consuming, but our use of language is one really quick and easy way to help make a positive contribution.

Over the last couple of years I have seen an improved awareness of the language being used to describe dementia, people living with dementia and different aspects of the symptoms and progression of dementia, but there are still far too many examples, particularly in the national press, of words being used more for their headline-grabbing value than their descriptive power.

As ever, there are issues around individual viewpoints that cloud these arguments. Many carers observing their loved one with dementia would instantly say that their loved one is suffering, although the alternative argument is that the carer perhaps misinterprets the suffering they feel as the suffering of their loved one. Some people with dementia feel that using the phrase 'dementia sufferer' is a fair reflection of how they experience life, but others argue that it isn't the dementia itself that a person sufferers with but other conditions that become more prevalent as dementia progresses - common infections like pneumonia and UTI's being a classic example.

Thinking back over my dad's experiences, we never had a conversation about language. In the main my feeling is that he lived with dementia, and generally lived quite well, but he suffered when he became ill with infections, when he developed pressure sores, when he lost his mobility and eventually became confided to bed. I think in any of those situations anyone might feel they were suffering. 

Overall though I didn't view him as a 'dementia sufferer', in fact given everything he had to cope with over the years he was astonishingly upbeat, with a classic English 'stiff upper lip' and an amazing ability to take what was thrown at him by his body and have great serenity and grace. To me, terming him a ‘dementia sufferer’ would almost undermine those qualities that he showed day in, day out until the end of his life. It is a phrase that speaks more of his deficiencies than everything he overcame even when the odds were stacked against him.

Another poster created to support the 'Dementia Words Matter' Call to Action

Ultimately though, whether you agree with me or not, if some simple changes in language help to empower people currently living with dementia while breaking down the stigma and negativity that often prevent people who have symptoms that could be related to dementia seeking medical help, then that can only be a good thing. Those kind of positive changes go to the heart of what Dementia Awareness Week is all about.

Of course no change in language, regardless of how carefully thought out it is, and no matter who is fronting the campaign for the use of particular words , will ever please everyone or reflect every experience but for the forthcoming Dementia Awareness Week, and beyond, I hope that you and your organisation will consider signing up to the ‘Dementia Words Matter’ Call to Action, and most importantly of all, embedding the principles requested of signatories.

Until next time...

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