Monday 20 July 2015

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...
Beth x

You can follow me on Twitter: @bethyb1886

Monday 6 July 2015

Mind the gap

Dementia making the headlines isn’t anything new and today’s make for fairly depressing, albeit highly predictable, reading. Anyone currently involved in dementia care in the UK, be that as a person with dementia, a family member supporting/caring for a person with dementia or a professional within health and social care, wouldn’t have been surprised to learn that findings from an Alzheimer’s Society survey of over 1,000 GP’s that was published today found the following: 

1.     There are big gaps in post-diagnosis support from health and social care services, with social care particularly singled out - two-thirds of GP’s surveyed said patients don't get enough provision from adult social services after a diagnosis.

2.     Unpaid carers (family, friends and neighbours) are being left to care for loved ones without the support they need.

3.     GP’s in areas that don’t have good post-diagnosis support provision are more reluctant to diagnose people with dementia or refer their patients to memory services for diagnosis.

Out of these headlines I suspect that council’s will be criticised for not providing enough social care support (which of course most councils are going to struggle to do in the current climate of austerity and huge cutbacks), carers will be given masses of sympathy (when in reality they would rather have action to help them not public pity), and GP’s will be lampooned for not offering more support themselves and not diagnosing patients who they may suspect have dementia (even though General Practice is under more pressure than it’s ever been in the history of the NHS).
Picking up on the diagnosis point, however, really gets to the heart of the issue for me. When dementia was first declared a governmental priority, the initial focus was on improving diagnosis. Fine, you might think, it’s important we diagnose people. Well yes, except that if you diagnose someone but offer them and their family no support all they have is a label to hang their symptoms from and absolutely no idea where to go next or how they might live well. 
Those issues then quickly fuel the problems that wider family networks have in providing support and care, and of course when the inevitable breakdown comes there is an increased need to utilise health and social care services, which are often either inaccessible, vastly over-subscribed or have disappeared as a result of cutbacks. Even when there is the possibility of localised support, there is often no one to help navigate complex health and social care systems, with GP’s under immense pressure and third sector organisations like Alzheimer’s Society, Dementia UK (Admiral Nurses) and others all needing additional funding from commissioners in order to offer the post-diagnostic support that they are equipped to provide.
I’d like to say there are some positives in this latest Alzheimer’s Society survey, but I can’t see any. Yet I don’t think it should be used as a stick to beat health and social care professionals with. That won’t help anyone, least of all the huge numbers of families who are needing support and just not getting it. The buck stops with government, and as I wrote about in the run up to the last election, I fear that many of our politicians just don’t understand the importance of social care and, whilst most are very sympathetic towards carers, the needs carers have - particularly around financial issues, access to training, equipment and breaks - are never comprehensively addressed in legislation.
Proper integration of health and social care services, rather than piecemeal promises, a decent carer’s allowance, legally enshrined employment protection for carers who are working alongside caring, freely available training and access to equipment and personalised breaks to help carers, and of course those all-important post-diagnostic services that aren’t subject to a postcode lottery and are personalised, innovative, flexible and based on best practice, are what people with dementia and their families need, and frankly have needed for as long as I can remember.
I have repeatedly argued that resolving any potential shortfall in diagnosis is intrinsically linked to post-diagnostic support. More people will come forward with potential dementia symptoms if they feel their local services are ready and willing to help them, and GP’s will naturally have more confidence with the diagnostic process if they know that the best interests of their patients will be served by giving them access to the care and support that they need. The key point here, though, is that the care and support actually needs to exist!
Allowing diagnosis and post-diagnostic support to get so compartmentalised was a huge mistake that’s leaving more families than ever before to pick up the post-diagnosis pieces alone. I suspect that diagnosis was seen as a ‘quick win’ in terms of statistics – by adopting case-finding in hospitals and GP’s surgeries, people who were developing dementia symptoms were always going to be identified in higher numbers than before such an exercise began.
Diagnosis was a major theme in the 2009 Dementia Strategy, and again in the 2012 PM Dementia Challenge, yet in 2015 whilst diagnosis rates have increased to a more ‘politically acceptable’ level, the personalised support that MUST follow that diagnosis is something many parts of the country are still trying to design, and that’s before they even progress to funding and implementation. 
To say this gap in post-diagnostic support angers me would be a bit of an understatement. When my dad was diagnosed, long before strategies and PM challenges, we had about as much support as many families do now. In other words, nothing. The only advantage families have now, as far as I can see, is that with improved awareness of dementia has come a wealth of online and paper-format resources, more helplines, and the hope that with increased political focus will come the action that is so badly needed. 
If I could find one chink of light at the end of the tunnel, and it’s stretching a point a very long way, it’s that dementia has come out of the shadows. That, however, is pretty scant consolation for families affected by dementia who feel isolated and unsupported, and whose loved ones living with dementia could be living so much better if only they had access to expertise, advice and support.
Closing the gap between diagnosis and post-diagnostic support must happen, and it must happen quickly.
Until next time...
Beth x

You can follow me on Twitter: @bethyb1886