It could be you

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 reality of being an unpaid family carer.

I’ve blogged for Carers Week every year since D4Dementia began, and while I was looking back at the start of D4Dementia for the blog’s 7th birthday, I revisited the two blogs I published during Carers Week 2012.

‘The carers job description’ was the more hard-hitting of the two, highlighting the relentless and exhausting aspects of being an unpaid family carer, while ‘Be inspired, be very inspired’ was the complete opposite as I talked about how amazing carers are.

While many blog posts may be reactionary and news-led, these two stand the test of time with quotes that remain as true today as they were then. I began ‘The carers job description’ by saying:

“If you had to be isolated, unsupported and fight the system, would you apply to be an unpaid carer?”

The reality of isolation, lack of support and having to fight systems every step of the way is a story I have heard countless times since - often, of course, from family carers whose loved ones have dementia, but also from numerous people in other caring roles including carers whose loved ones have different health conditions, sandwich carers and parent carers.

I’ve seen carers break down talking about the struggles they face, and asking simple questions like, “Why can’t this be easier?” and, “I have no idea what to do and no one to ask.” In a public arena, arguably one of the most powerful carer stories I have ever heard came from Sheila Wainwright, excerpts of which I shared in my 2013 blog, 'Caring for carers':

“Sheila told of the ‘Shear daily misery’ of their life, how ‘No one’ answered her questions, and that over the years ‘Many people came and went, and came and went’ but there was simply no continuity of support for her or her husband. Sheila admitted that she was, 'Planning how to end our lives before a call to the Admiral Nurse Dementia Helpline saved my life.’ Her husband eventually passed away in hospital after an agonising end to his life, with Sheila movingly recalling the actions of a nurse as her husband was finally at rest, ‘That sprig of flowers put on his chest when he died was one kindness I will never forget.’”

I went on to say in 'Caring for carers':

“It can never be acceptable that we wait until someone’s death before we show kindness to their carer who has valiantly stood by their side as, in Sheila’s words, her husband, ‘Screaming and snarled, pooed in the shower and pushed it down the drain, lost the ability to walk and talk, and went from 13 stone to just 7 stone when he passed away.’”

Sheila’s story has stayed with me ever since, and has been joined by stories from many other carers, past and present, who I’ve met in the months and years since I wrote ‘Be inspired, be very inspired’ but who that blog could easily have been written about, particularly when I said:

“There is something that touches your soul when you hear the individual stories of how people care for those they love the most.”

These personal accounts are incredibly hard-hitting, but what we all need to appreciate is that while carer’s stories shape our understanding and provide an immensely powerful narrative that we’ve seen countless times, not least in the recent BBC Panorama programmes ‘Crisis in Care – Who Cares?’ and ‘Crisis in Care – Who Pays?’, for the people living those lives they are a real, raw reality, not something to read or watch, agree with and then at best leave the issues they raise at the bottom of society’s ‘to do’ list. As I said in ‘Be inspired, be very inspired’:

“If you are caring for someone right now, don’t ever underestimate the amazing contribution you make to society. Anyone who does not recognise that has never walked in your shoes, but may well do so one day and will then see just what this unique role entails.”

As the thoughts of charities, businesses and organisations turn to carers again for Carers Week, which is themed this year around isolation, the stats are stark:

• One in three unpaid carers (32 per cent) looking after a loved one who is older, disabled or seriously ill has felt lonely or isolated because they are uncomfortable talking to friends about their caring role. 
• (32 per cent) say they feel socially isolated at work because of their caring responsibilities.
• (74%) feel their caring role isn't understood or valued by their community. An unwillingness to talk about caring has for many carers created a barrier to their inclusion at work, home and in public life.

(Data from https://www.carersweek.org/media-and-updates/item/487547-carers-week-2019-launch)

Add in the human emotions that lie behind those statistics and I think we can all agree that more must be done to support carers. The problem, of course, is that those who understand what being a carer really means have been saying as much for years. When this will result in actual concrete support services that aren’t a postcode lottery remains to be seen, but those who ignore this issue do so at their peril. 

There are currently 6.5 million people in the UK who are carers. Every day another 6,000 people take on a caring responsibility and there are predicted to be 9m carers by 2037. So, to quote a famous lottery slogan: “It could be you.”

Until next time...

You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook

The forgotten workforce

In all of the meetings I’ve attended about unpaid carers in the 6+ years since my own caring role for my dad ended, the most common themes have been: A) How do we identify carers? And B) How do we assess carer’s needs? The end result of the latter is generally to offer respite, somewhere along the line a leaflet (or a whole pack of leaflets) might be given, and possibly there'll be some signposting to a charity who are running a local carers group. Box ticked. Job done.

What a contrast to the paid care and support workforce, who in England need to complete the Care Certificate (which is comprised of 15 standards) and regularly update themselves in mandatory training topics such as health and safety, infection control and manual handling. In addition, all good care providers offering specialist support for people with dementia, learning disabilities and other complex conditions will provide in-depth and on-going training to support their staff. Only last month for Dementia Awareness Week, I blogged about the training and mentoring I provide to health and social care staff.

Two roles, one huge discrepancy

With this huge discrepancy in the levels of training and support provided, you might think that paid care and support workers and unpaid family carers (or you may prefer another term like ‘care partner’, ‘caregiver’ or ‘supporter’ - I know from everything I’ve done to promote appropriate dementia language that words matter) have very different roles, but not so. Unpaid carers/care partners frequently undertake all of the elements of care and support that paid care and support workers do, but mostly in highly unsuitable domestic homes that are ill-equipped to support a person with high dependency needs, and with the additional and extremely complex element of the emotional ties that they have to the person who needs care and support.

An estimated 6.5 million people in the UK do this for a family member or friend who has a disability, illness, mental health problem or who needs additional help as they age. Imagine if we had 6.5 million paid care and support staff working for home care agencies, care homes and the like who had never been trained in any aspect of their role and were relying on guidance from a leaflet or their own internet research (for free online courses such as these). There would be uproar. As it is many professionals don’t receive education to the extent required for their role when they’ve had training!

I know that my blog is read my numerous unpaid carers/care partners who have contacted me either looking for information or advice, or thanking me for what they have found within my 200+ posts. A few more may find my blog in the days ahead, as its UK Carers Week 2018, and whilst I’m very happy that I can provide help and support, it is a damming indictment that in 2018 there is no formal training programme for this 6.5 million strong forgotten workforce.

It seems that the discrepancies between paid and unpaid caring are considered ok because unpaid caring happens behind private front doors, and if you’ve no idea what you’re doing no one cares until a crisis occurs and you rock up at A&E.

Education – the key to remaining healthy and connected

The theme of this year’s Carers Week is how we enable carers/care partners to remain healthy and connected. For me, carer breakdown has always been a huge topic - I’ve lost count of the times I’ve said that a person with dementia is most likely to end up utilizing professional care services when immobility or incontinence leave their carer/care partner unable to cope. 

Thinking about immobility for a moment, I’m reminded of a story I was told about a lady who frequently visited a relative in a care home with her husband. Her husband had dementia, and was gradually losing his mobility. His wife was struggling to cope with supporting him to get in and out of the car – care staff spotted this one day and invited the lady to join their next manual handling training. Equipped with that knowledge, the wife was able to safely support her husband and protect her body from the common strains that can leave a carer/care partner unable to provide care and support.

Regarding incontinence, I often find myself reflecting on the film ‘Still Alice’, when Alice goes to her holiday home with her husband and is caught short trying to find the toilet. Alice and her husband are immensely distressed. From that moment, the seed that goes on to becoming urinary incontinence and potentially double incontinence is sown. Yet with some support to create an enabling environment, Alice can continue to find the toilet independently and remain continent for longer.

These are just two examples of very small, very simple interventions that can support families to do what most of us would want to do – help our loved one live a good life with dementia or any other condition that they are diagnosed with. But it’s utterly bonkers to think that any family can do that without any education or knowledge - lifelong learning, rooted in the personal experiences of former carers/care partners, for the duration of a carer/care partner’s life is essential. Even when a family member comes from a professional health or care background they often struggle, simply because care and support in a domestic home, when your shifts are 24/7, is about navigating numerous relentless difficulties without anyone to support you.

Knowledge is permanent respite from inexperience

The idea that a family carer/care partner just needs some ‘respite’ to get back on track is, I think, very insulting. Many families don’t want their loved one to go into a care home, or any other respite ‘solution’ temporarily. It’s not a ‘holiday’ for either person – just an upheaval fraught with worry, and a fear that one day the person will go into residential care and not be able to return home. I know that feeling all too well – when my dad went into hospital after we found him collapsed on the floor at home he never entered his front door again.

I’m sure that with the Carers Week theme of keeping carers/care partners healthy and connected there will be a lot of focus on areas like carer health checks, drop in clinics, social support groups and the like. But I know from my experiences with my dad that there is no substitute for knowledge. If there was, we wouldn’t set so much store by sending our children to school for the best part of 13 years of their young lives (and often far longer in higher education). And if the knowledge I’d gained as a carer/care partner was superfluous and insignificant, I wouldn’t have started this blog to share our experiences to help other families (and D4Dementia wouldn’t be so widely read).

Until next time...

You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook

Delivering a dementia diagnosis

There are many times in a person’s life with dementia that are described as pivotal. Often these are the difficult, crisis occasions that create the negative narrative that is so commonly associated with dementia. But after my recent personal experiences of dementia in my wider family, I’ve found myself reflecting on what I feel is arguably one of the most, if not THE most pivotal moment in a person’s life with dementia - their diagnosis.

As I’ve written about many times, my dad’s diagnosis took ten years, involved a catalogue of missed opportunities, a crisis that could have killed him, and ultimately when we finally heard the words that he’d been formally diagnosed with dementia, they came when we visited him in hospital and found his bed empty. The nurse said he’d been moved to the Elderly Mentally Infirm (EMI) Unit having been diagnosed with dementia.

Fast forward 14.5 years and for most people in the UK things have improved. We now have memory clinics, and the voluntary Memory Services National Accreditation Programme (MSNAP) from the Royal College of Psychiatrists that involves regular peer reviews (I am an MSNAP Peer Reviewer). Multidisciplinary teams staff these clinics, bringing a wealth of different skills and experiences that are vital in giving patients the very best diagnostic experience.

But not everyone has the type of experience I’ve seen in some of the best memory clinics in England, and when the experience isn’t good the effects last long after the doctor has delivered their clinical judgement. Listening to the diagnostic experience one of my in-laws had in South Africa last year left me with a mixture of sadness and anger - no person should have such a poor experience given all of the best practice examples available from many different countries (including the UK), and bear in mind that we are talking about private healthcare here, where the person is the very definition of a consumer.

My feelings left me reflecting on what a good experience really looks like from the person’s perspective, and I want to share those thoughts with you for this, my first D4Dementia blog of 2018. Whether you are a person concerned you may be developing dementia and could be seeking an explanation for your symptoms in the coming months, a relative worried about a loved one who you may go on to accompany to diagnostic appointments, or a clinician responsible for any part of the diagnostic pathway, I hope this list will help you.

1)     The person must own their diagnosis

This is the singularly most important aspect of diagnosis. Dementia remains stigmatised, particularly amongst older generations who still remember the asylums and labels of ‘madness’ that may have formed their viewpoint of dementia many years ago. The person needs to be personally involved and addressed at every point in the diagnostic process, and when the final verdict is delivered, it has to be communicated to the person first and foremost, in the most appropriate way for that person and by the most appropriate clinician. Anything less than this and the risk of the person not believing or trusting in the diagnostic process and the outcome of it will massively increase, which in turn can have long-term ramifications.

2)     Family can help... and hinder

It’s often said that a dementia diagnosis isn’t just given to the person, but to their whole family and wider network. Whilst as a daughter whose father lived with dementia I would agree with that, there is always a temptation to involve family members in the diagnostic process more than the person themselves, sidelining the very individual who is potentially living with dementia. Clinicians often choose to speak to family members because it’s perceived as easier and the information being gathered is seen as more reliable. At best that’s insulting. At worst it pits family members against their loved one with dementia. Marginalising the person is likely to leave that individual feeling that everyone is ganging up against them, which is a recipe for destroying relationships at the very time when they need to be at their strongest.

3)     The diagnostic process must be fair and thorough

For a person to believe and trust in their diagnosis, the process must be comprehensive, transparent, never rushed and totally individualised. Attempting even preliminary investigations when the person is unwell with another condition or infection is, in my view, utterly unacceptable. The person must be at their best to know in their own mind that they are able to give of their best in tests. Equally from a clinical perspective, you want an accurate measurement of the person’s baseline or, if you are tracking from a baseline, an accurate picture of where the person is now. Diagnosing just to tick a box, earn a financial reward (as has been available in the past in England) or prescribe certain drugs is never, ever justifiable.

4) A few words that change a person’s life

I’ve been very lucky in my work with MSNAP to hear from many people living with dementia and their family members who’ve had nothing but praise for the doctors, nurses, therapists and advisors who they’ve encountered during their diagnostic experience. How the diagnosis is delivered is a key marker we look for during MSNAP peer reviews and with good reason. An empathetic clinician who delivers the news of a dementia diagnosis with kindness and clarity, tailoring the level of information to the person, understanding what a momentous moment it is for the person, and allowing time and space for their carefully-chosen words to sink in is a clinician others less adept in these situations could learn a huge amount from.

5) Don’t abandon the person and their family

I couldn’t write a blog about diagnosis and not touch on one of the aspects of dementia care and support that I am most passionate about - post-diagnostic support. Even when a diagnostic process has fulfilled all of the aspects I’ve outlined above, the weeks and months after the person’s diagnosis can leave the individual and their family feeling abandoned and having to cope alone. This is when the risk of depression for all concerned can exponentially increase, and life can begin to unravel pretty rapidly and most definitely not in the direction of ‘living well’. Accessing peer support (including through DEEP and DAI), carer support, making environmental modifications, exploring rehabilitation, reablement and therapies to combat distressing symptoms are just a few ways to ensure that a good diagnostic experience is followed by an equally positive post-diagnostic experience.

Until next time...

You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook

Why are you a carer?

On the face of it this is a really simple question, yet it is one that can generate so much discussion. It's something I've been asked a lot in the last few years in the context of, "Why did you care for your dad?"

People are often surprised that as a teenager, twenty-something and thirty-something I would have put my life on hold to care for my dad. Yet consider this: when people begin a family they are rarely asked, “Why would you want to have children?” despite the massive life-change and life-long commitment parenthood entails.

Although the motivation for becoming a carer, the reasons people continue with caring (often against a backdrop of significant difficulties), and the way in which many carers struggle to move on with their life after their caring role ends are very individual, there are some common themes that often surface when you talk to carers, and I want to explore those commonalities in this Carers Week 2017 blog.

Why become a carer?

Many people who’ve never been a carer often approach the topic under the premise that people who are carers have made a lifestyle choice to be so. Big mistake. I have never met anyone who woke up one morning and actively decided to become a carer for a relative or friend. Every carer I have met fell into caring for someone they love due to various circumstances, largely beyond their control, and generally never realised they were becoming a carer.

It is a well-worn phrase, but worth repeating: I never considered myself a carer for my dad, just a daughter looking after her dad.

My G8 Dementia Summit film

Do labels matter? In essence no, if you realise that you have taken on a responsibility that has consequences for your life and your health and are proactive in ensuring that you look after yourself as well as the person that you are caring for. In reality, however, the 'carer' label will - in theory - give you access to services (if they exist!) that without that label you wouldn't be able to access. If those services are fit for purpose, they can help to prevent carer ill-health and carer breakdown.

Why do you continue to be a carer?

Again, this question suggests most people make an active choice. They don't. Carers remain as carers often through a lack of choice, and as much as it may be very un-politically-correct to admit it, often through a sense of duty, obligation or necessity.

However, that isn't to underestimate the human emotions that accompany caring. They are potentially the biggest driving factor towards carers remaining as carers once you remove the 'circumstances beyond your control' element. Moreover, it's emotional ties that often keep a carer caring for longer than is perhaps good for them or the person they are caring for.

As much as caring is immensely difficult, there is something in the depths of the human psyche that wires us to prevent suffering in those we love and give comfort and support. The rawness of this emotional pull isn't the same for everyone though, which may explain why in a large family it's often one person who is the primary carer with other family members very much on the peripheries. And that is no one's fault - again, it's often a mix of circumstances with a good helping of emotions.

Why is it so hard to move on when your caring role ends?

Again, it's those emotional factors biting us in the depths of our hearts and souls. You don't spend that much time with a person, and potentially nurse them through the end of their life, only for your life to return to your pre-caring days afterwards.

For a start, the bereavement experience is very different - you aren't just grieving the loss of the person, but a loss of the purpose and routine you had. Caring, for all its challenges, is something many people become exceptionally adept at, and the feeling of doing something so important so well is a huge source of pride which can be lost when you are no longer caring for the person.

Why is capturing carer knowledge and experiences so important?

One way of combatting the loss of skills and purpose is to go into a social care role professionally, and some of the very best care workers I've met in my consultancy work have a strong background of being family carers. For other people, caring for 'strangers' is just too difficult after caring for a loved one, no matter how much we might say that 'Strangers are just friends you haven't met yet', or indeed the former carer's own health or age make such a career choice prohibitive.

My interview with Havas Lynx where I talk about the wealth of knowledge and experience carers have and the importance of capturing that

The challenge for all of us, however, is to find ways of capturing carer knowledge - at every juncture of a carer's life - to benefit others, be they family carers or professionals. And if you are a health or social care professional, NEVER consider yourself more learned or accomplished than a family carer, be they a current or former family carer. That unique pull of circumstances and emotions creates a rarefied learning experience that really is - both positively and sometimes negatively - second to none.

 

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

 

Why don’t we listen to people with dementia?

Before I get into the substance behind the title I’ve chosen for this blog post, I first want to acknowledge that there are organisations who do listen to people with dementia, and organisations exclusively made up of people with dementia who give those individuals a very prominent voice. However, in both of these instances, this remains a minority representation of people with dementia, and that’s the inspiration behind this blog post.

I chose the title, ‘Why don’t we listen to people with dementia’ purely because the majority of society doesn’t. Despite awareness-raising campaigns that have begun to change the perception of dementia, stigma still looms large, language is still used in a derogatory, belittling way that helps to re-enforce stigma, and people with dementia are largely talked about by others, or ignored completely.

Reflecting on my dad’s life with dementia, he never really had a voice. As a family we didn’t understand dementia for many of the 19 years dad was living with it (and certainly in the first 10 years before his diagnosis), so in essence we were just muddling along together. In the last few years of dad's life, when he lost his more vibrant communication abilities, we did our best to advocate for him, but I appreciate now, more than ever, that the very best we could ever have done for dad was to interpret for him, and where there is interpretation there is margin for error. 

The only true representation of each person’s unique experience of living with a diagnosis of dementia is from that person themselves. Anything else is a substitution.

I understand this more now thanks to some of the inspirational people I’ve been fortunate to meet who are living with dementia. Sharing my dad’s life gave me an education in dementia like none other, but with dad gone, some of the amazing people who are living with dementia that I've met since then help me to keep learning, and that is a gift more precious than I could ever describe.

I was recently asked to compere a launch event for two books – One by Shibley Rahman, an academic, called ‘Living better with dementia’ (which I’ve written a foreword for), and one by Kate Swaffer, a lady living with dementia, called ‘What the hell happened to my brain’. Kate lives in Australia, and I’ve followed her blog since 2012 – a more insightful read would be impossible to find, and I constantly recommend Kate’s writing to anyone looking to learn more about what it’s like to live with her particular experiences of dementia.

Kate Swaffer, Beth Britton and Shibley Rahman

Given the geographical distance between us I’d only ever seen Kate’s presentations on videos, so having the opportunity to listen to her in-person was truly special. Afterwards, I described Kate’s presentation as ‘awesome’ but I’m not sure that really even begins to do it justice.

I know Kate has had many struggles in being recognised and acknowledged as an authoritative individual in her own right, and even more astonishingly, openly demonised by some who disagree with her, frankly, very common sense views. Granted we are all entitled to our own opinions, but I cannot understand why anyone would think Kate shouldn’t share her experiences, or speak out on issues like the use of language around dementia or perceptions of ‘wandering’ and ‘challenging behaviour’. 

The discomfort around Kate’s advocacy for the rights of people with dementia seems to have its roots in the belief that questioning the status quo, the way things have always been ‘done’ and ‘described’, is somehow taboo. Yet surely the reason society has progressed so far in numerous areas of life like medicine, science and technology is precisely because someone decided to question the status quo, do something differently, and find remarkable results.

Like an ostrich, there seems to be a desire to bury heads in the sand, when in reality we should be thanking and applauding people like Kate for having the courage to speak out, and the wisdom to talk so much sense. And yes, the irony of that last statement isn’t lost on me, given that people with dementia have, historically, been seen as being unable to speak out and losing any wisdom they had once dementia is diagnosed.

At the moment I feel there is a perception that a person diagnosed with dementia somehow instantly progresses to having very advanced dementia, with all the communication difficulties that can entail which would make it very difficult to be an outspoken advocate of your personal experiences. In reality, however, for the majority of people diagnosed with dementia, progression is much slower, and the ability to speak out and contribute to debate, policy and the implementation of policy is potentially feasible for a significant period of time, depending on personal circumstances of course.

So where do we go from here? Organisations like DEEP (Dementia Engagement and Empowerment Project), The Scottish Dementia Working Group, the European Working Group of People with Dementia and Dementia Alliance International are increasingly finding that their membership, made up entirely of people who are living with dementia, are finding a voice, but in comparison to the numbers of people who are actually living with dementia, the proportion is tiny.

Amongst the total number of people living with dementia in England, I fully appreciate that the majority may well prefer to keep themselves to themselves – my dad would almost certainly fit into that category if he was still alive and newly diagnosed. People who are diagnosed at a younger age are often more widely heard voices, not least because individuals in that demographic may feel more confident in using social media and blogging. In the end, I’m not sure it matters so much who speaks up, just so long as every person with dementia has equal opportunity.

Then of course it is down to organisations, both national and local, governmental and private corporates (including dementia conference organisers), to listen, and that is perhaps the hardest part of all. Home truths don’t often sit easily, nor does challenging the status quo, as Kate Swaffer has already proven. But 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.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook  

Talking about dementia... with your patient

Welcome to the last of my seven ‘mini’ blogs for UK Dementia Awareness Week 2014.

Concerns that a person is developing dementia aren't just restricted to that individual - they also affect those closest to them, bringing complex relationships into play. Over this Awareness Week I want to look at some of the emotions and reactions that underpin the difficult conversations thousands of people are having, or thinking of having, as they open up about dementia.

Day 7 - 'A good bedside manner'

Even for professionals who have (we hope) been trained in how to broach the subject of dementia, it can be a difficult step. Many doctors and nurses have told me that despite the increased awareness of dementia, raising concerns about the potential development of it to a patient isn't easy. Indeed, one of the key objections to the idea of screening people for dementia was the way in which it could potentially alter the doctor/patient dynamic, and force very uncomfortable (and in many cases inappropriate) conversations.

During the period of my father's diagnosis, the medics we met really didn't cover themselves in glory in terms of their method and manner of communication or their ability to explain, empathize, reassure, personalize or indeed work with us as a family. It was a very prescriptive experience, and we didn't appreciate the feeling that we were being processed through a system.

A doctor with a genuine concern that a patient is developing dementia should be one of the best-placed people to help that patient, but it should never be about ticking boxes. An empathetic conversation that includes signposting to support and advice is a doctor’s role, but in amongst raising those concerns it is vital to remember that for the majority of patients there will be other people in their life, as I have explored in my last six blog posts, who will also be affected by any potential diagnosis.
 
Opening up to a person you know about your concerns that they may be developing dementia is a conversation most people dread and many seek to postpone for as long as possible. For help and advice on how to broach the topic of dementia, read my blog post 'Having THAT conversation'.

 

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

Caring for carers

For many years I’ve thought of carers as the forgotten millions. As a family we certainly felt forgotten on many occasions during my dad’s 19 years with dementia, both before and during his years in care homes and his spells in hospital, and given what I hear at conferences, events, through my writing, social media and email, little has changed.

There is just one subtle difference though – I feel the voice of carers is becoming louder, more persistent and more difficult to ignore. Slowly but surely there is a movement growing in momentum, spirit and immovability that will, I hope, one day ensure that the needs, rights, knowledge and skill of unpaid carers is recognised and enshrined in the fabric of society.

If anything it amazes me that health and social care have for so long undervalued the role of people who care for a loved one, be they a family member, friend or neighbour, near or far, living with complex needs and long-term conditions or someone older and/or immobile who requires crucial daily living support. There is no archetypal carer – they may be young or older or anywhere in between. They will undoubtedly have a life of their own that they will often indefinitely put on hold. I guarantee the majority will be driven by love and devotion, but exhaustion and frustration will also play a big part in their life. What unites them all, however, is the need for far greater support and recognition.

Support is vital because you simply cannot be a 24/7 carer for what may be an unspecified amount of time before the cracks begin to appear in your own health and wellbeing, your caring suffers and therefore so does the person who you are caring for. When the carer breaks down and then needs care themselves, there is often no one to care for them and indeed no one to step into their caring shoes, meaning effectively two people become highly dependent on society.

Recognition goes hand-in-hand with support, because if a carer is recognised as a carer there is more chance that their needs will be met, hopefully avoiding that crisis situation. Recognition goes further than this though. It is about seeing a carer and the person that they are caring for as a joint entity, rather than seeing the vulnerability of the person needing care and totally ignoring how that vulnerability also makes the carer very vulnerable. Recognition is also about valuing carers – their knowledge of the person that they are caring for is vital for any professional providing healthcare or social care for that person. That knowledge must be fully integrated into the provision of professional care.

How we make this happen in relation to healthcare is part of the new NHS ‘Commitment for Carers’ – an initiative that recognises that the health service can and must do much better when it comes to responding and reacting to carers, their needs and their knowledge. It must be hoped that this ‘Commitment’ will forge a workable, long-term plan that will benefit carers, those that they are caring for, and the professionals who should be partners in that care provision.

Very close to my heart, of course, is how we support those who are caring for a loved one with dementia. Very early on in the focus on dementia, the Dementia Action Alliance (DAA) was born (I am a national member), and from that we now have the DAA Carers Call to Action (CC2A). The aim of the CC2A is to, “Ask the right questions, explore examples of good practice and find solutions to address the needs and rights for family carers of people with dementia.”

The fact that any of these initiatives exist at all is, ultimately, down to carers themselves. Despite being people with exceptionally busy, stressful and hugely demanding lives they have found time to speak to media organisations, effectively used social media to highlight their experiences and, perhaps most powerfully of all, have spoken out at many key events, often supported by fantastic teams from carers’ charities.

In the case of carers of people with dementia, this has often been through Dementia UK’s ‘Uniting Carers’ – a group that I am very proud to be a member of and very sad to see disbanding. Fellow members, alongside people with dementia, blew me away at last year’s Dementia Congress, and this year I was literally moved to tears hearing their often heart-breaking accounts.

Sheila Wainwright’s story in particular was something that a packed Congress hall of people with dementia, carers, health and social care professionals, business people and media representatives, alongside Care and Support Minister Norman Lamb MP, really needed to hear. Recounting her husband’s dementia, and the impact it had on both of their lives, Sheila told of the "Shear daily misery" of their life, how "No one" answered her questions, and that over the years "Many people came and went, and came and went" but there was simply no continuity of support for her or her husband.

Sheila admitted that she was, "'Planning how to end our lives before a call to Admiral Nursing Direct saved my life." Her husband eventually passed away in hospital after an agonising end to his life, with Sheila movingly recalling the actions of a nurse as her husband was finally at rest, "That sprig of flowers put on his chest when he died was one kindness I will never forget."

It can never be acceptable that we wait until someone’s death before we show kindness to their carer who has valiantly stood by their side as, in Sheila’s words, her husband, "Screaming and snarled, pooed in the shower and pushed it down the drain, lost the ability to walk and talk, and went from 13 stone to just 7 stone when he passed away."

Sheila said she felt bereft and bewildered. I had tears in my eyes from the pain in her voice and her story, and I know for certain that I’m not the only person at this year’s Dementia Congress who was similarly emotional. Although Sheila’s husband is at peace, the psychological ramifications of caring for him and all of the struggles that she faced live on two and a half years later. It is for Sheila, and everyone who walks in her shoes, that we MUST ensure that we care for carers.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

Does the world really stop?

There is a prevailing view that when someone is told that they have dementia, everything in their life must stop. If they were working or studying that must stop. They must stop driving. They stop being spoken to and start being spoken about. They stop being given tasks to do, or even being allowed to complete simple tasks that they feel comfortable tackling.

Any deviation from this is considered to be a lack of compliance, but since when did people with dementia have to become compliant? Being told you have a terminal illness is likely to make most people want to become as incompliant as possible. A diagnosis of many other terminal illnesses is often associated with the formation of a bucket list, a compendium of all the things someone wants to achieve, all the places they want to visit and all the people they want to meet. Not with dementia though.

We expect people with dementia to just crawl home and stay there until potentially a medical emergency brings them into contact with their local hospital. Then they will encounter the giant beast that is healthcare, followed by social care, followed by huge confusion and frustration for a person who is likely to already be hugely confused and frustrated due to their dementia.

So is this mismanagement on a grand scale or just a fact of life? Personally I don’t think this reality is right for anyone. No one is likely to live well with dementia if their life is reduced to a model of isolated dependence, where joy and happiness is in short supply and irritation and depression are the daily norm.

I’ve written previously about the need for everyone with dementia to be given the opportunity to achieve, and that can be achievement at every stage of dementia. You may associate achievement with hitting huge milestones and pushing yourself to extremes – for someone with dementia it may be something as simple as making a cup of tea or buttering some bread, but it’s achievement, it is an element of self-sustainability and it’s priceless.

I lost count of the young doctors who saw my dad during his 19 years with dementia and questioned the point of treating a man who a) had a terminal disease, b) was immobile (as dad was for many years), c) doubly incontinent, d) had a swallowing problem (for the last four years of his life) and e) apparently in their narrow-minded judgement, had no quality of life whatsoever.

He did, in fact, have quality of life, just not what most people with limited understanding of dementia perceive to be quality of life. He enjoyed his food and had an amazing appetite. He loved listening to music and would sing along. He rested peacefully and relaxed with simple pleasures. He looked forward to going outside and would snooze in the sun under his panama hat. He was emotionally alert and showed that when he saw the people he cared about. He was loved and showed love to those he cared for. All of these things represent quality of life.

My dad had that, however, in spite of the systems that try to wrench this away from people with dementia. Systems that want to dehumanise and disempower people with dementia, pretty much from the earliest point in their dementia to their last breaths at the end of their life. My dad had quality of life because he had a family. How many people don’t have an actively involved family or indeed any family at all? Relatives have been known to run for the hills when they hear that a member of their family had developed dementia (some fearing that it is, in fact, contagious).

My dad’s world could easily have stopped. I’m sure on some days it did, no one in our family would claim to be a superman or woman – none of us were capable of removing every negative feeling and experience from the life of my dad, however much we tried. That is, however, the point: we did at least try.

For us the world didn’t stop, it kept on turning. Yes it was different, but life doesn’t stand still. It can happen around a person with dementia, or we can all make a conscious decision to ensure that person is part of their world. Indeed, to give someone the best chance of living well with dementia nothing needs to ever really stop. Yes they may not be able to carry on with a particular type of work or hobby, but there is no reason not to try something else that they enjoy, or indeed something new.

If paid employment is out of the question, volunteer, campaign and spread the word. Talk about your experiences; I guarantee that there will be people who want to hear about them – I definitely do. Driving a car may not be possible, but look into every other form of transport and make sure that you are getting out and about regularly. Tasks may need some supervision occasionally, but as observers we should never jump in to ‘correct’ unless it is absolutely necessary to prevent harm. It’s ok to do things ‘wrong’ – it’s better to have tried, experimented and come up with something unique, than to have sat back and decided that you can never do anything ever again and it’s time to just give up and admit dementia has won.

Throughout history the most innovative people have often been incompliant – the mainstream wasn’t for them, and they set about putting their own mark on the world. In many ways, I’m hugely incompliant and actually proud of it. Facing up to a future with dementia may be terrifying, but let it also be liberating. Make your bucket list and don’t let your world stop – it’s far harder to start again than it is to just keep going.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook