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

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Reflections on 2014

So, the end (well nearly the end) of another year. 2014 has truly flown by for me – a whirl of speaking engagements, writing assignments, teaching, advising, assessing  and supporting. 

Picking out highlights is always tough. Sometimes the most special moments come and go without being linked to a specific event, they just ‘happen’ when you meet someone and get into a conversation, or read a tweet or an email, but in true end-of-year style I’m going to try and pick out some of my favourite memories from the last 12 months. 

In no particular order here are five of my 2014 highlights:

1)      Film for Care England 

It was an honour to be asked to make a film for Care England. Partly because I was in illustrious company, with some true ‘heavyweights’ of social care being invited to contribute, but mostly because it was an amazing opportunity to talk about some of the aspects of social care that are important to me, and to direct specific issues towards care providers and policy makers. 

My dad’s 9 years in care homes has left me with an abiding desire to A) celebrate good  care (my dad had some amazingly good care) and B) work to improve poor care practices (which sadly my dad also experienced). Whatever the rights and wrongs of how residential care is provided or funded, every single individual receiving it deserves care that is consistently outstanding. 

 

You can view the film here: http://www.careengland.org.uk/beth-britton-interview

2)      Interview for The Guardian 

Given that I’m someone who is used to doing the interviewing, rather than being interviewed, it was an unusual experience to be on the other end of the questioning! The feature charted my life with my dad, and talked about some of the work I’m doing now, including with CQC. 

It also helped to bring my D4Dementia blog to a new audience, and contained information that I hope was helpful to readers, including my time honoured advice on choosing a care home:  "I always say to people: go with your gut instinct. Don't go for something that looks like a hotel, or promises anything and everything. Go for something that feels right to you." More expansion on that advice is available here. 

Most importantly from my perspective, however, the feature stressed the independent nature of my work, which is something that I am fiercely protective of. 

 

You can read the interview here: http://www.theguardian.com/society/2014/jul/30/beth-britton-care-homes-not-police-states-dementia-blogger

3)      Standing ovation at the Alzheimer Europe conference 

As I’ve eluded to I speak at a lot of events - followers of the D4Dementia Facebook page or my Twitter feed will know this well. Over the last 2.5 years the topic I have found most difficult to talk about has, unsurprisingly, been my dad’s end-of-life care.  

As a result I’ve only spoken about it in depth and publically twice – at the National Palliative Care conference in December 2013 and at the Alzheimer Europe conference in 2014. I remember first writing about my dad’s end-of-life care in this blog post, and being in tears writing it and reading it back. With this in mind, you can imagine how difficult it was to speak to a large group of people, but the reaction from the audience at the Alzheimer Europe conference was so memorable it warranted a blog post all of its own. I will always be grateful to that audience for their support at the end of a very difficult presentation, so if you were one of those people in that room, thank you. 

4)      A day full of hope with BRACE 

Since I came into the health and social care world on a professional level, I have attended a lot of conferences. Truth be told, I have become increasingly fatigued with the endless regurgitation of information that these events produce. For me it has become an issue where we need quality to triumph over quantity. The lives and futures of people with dementia and their families are too important for progress in how we inform and educate to be so achingly slow and uninspiring.

With that in mind, easily my favourite conference of 2014 was BRACE 'Dementia: Hope for the future'. BRACE hold a very special place in my heart. They gave me my first ever speaking engagements in September 2012, invited me to be part of their Question Time panel in 2013 and subsequently made me an Ambassador. Being involved in the planning and delivery of ‘Dementia: Hope for the future’ was another highlight in our on-going relationship. 

This ‘mini conference’ had a strong local focus and offered lots of practical information and advice. It also covered national and international issues. All the major areas of dementia care were represented – Dr Peter Bagshaw covered primary care from the point of view of a GP, social care was represented by Mike Hennessey who is a director at Bristol City Council, secondary care and research was covered by Dr Liz Coulthard who is a cognitive neurologist, consultant senior lecturer and clinical research team lead, and most significantly of all, the views of two people living with dementia – Chris Roberts and Hilary Doxford - and carers present and past – Chris’ wife Jayne, Tony Hall and myself - were present throughout the day. 

The fantastic feedback proved that this event inspired and influenced the people who attended, and I’m certain that they took away many actionable, positive messages and signposts for their professional and/or personal lives. Other conference organisers please take note! And a little heads up for 2015: there will be another BRACE event, so keep your eye on the BRACE website in the coming months.

5)      Training GP’s 

It was way back in 2012 that the idea of me offering training to health and social care professionals was first muted. 2014 saw my first foray into that area as I undertook a GP training session for the first time. 

I have come to realise that from a professional point of view nothing gives me greater pleasure or pride than being able to make a difference to frontline practice in a practical and personal way. Drawing on my own experiences with my dad, and the experiences of the countless other people who are living with dementia and their families whom I have been privileged to meet, can have a really powerful and positive impact on any audience, including seasoned professionals like my group of GP’s. 

For 2015 I hope to grow this side of my work, in both health and social care, with my number one aim being, as it was when I began D4Dementia, to make a real and lasting difference to the lives of people who are living with dementia and their families. 

I could add many more highlights, but I will end by thanking each and every one of my readers, social media supporters, colleagues and friends who have made 2014 another very special year for me. 

This will be my last D4Dementia blog post for 2014. I’m taking an extended Christmas break to spend time with family, but rest assured that D4Dementia will return in 2015. The first D4Dementia blog of the New Year will be published on 19 January 2015. 

Until then I wish you all a very happy Christmas.

 

You can follow me on Twitter: @bethyb1886

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Living with dementia as a younger person

In amongst the figures announced recently by the Alzheimer's Society on the scale and cost of dementia in the UK, the data on the numbers of younger people developing dementia was particularly notable. It is estimated that 42,325 people are now living with younger-onset (early-onset) dementia, a number considerably higher than previously thought. Given the problems younger people often have around obtaining a diagnosis it is probably safe to say that the actual figure could be even higher.

Dementia is traditionally associated with older people. That is the prevailing view amongst the general population, and in truth little has been done to dispel it. Occasionally there will be a newspaper or magazine article about an adult under 65 with dementia, and rarer still a child with dementia, but such coverage is often more sensationalist than really educational.

We know that dementia remains stigmatised generally, but if you are a younger person with dementia that stigma is likely to be far more significant. We know too that there aren't enough good quality, personalised and responsive post-diagnostic support services for people who are diagnosed with dementia - again, if you are a younger person that dearth of support is potentially even greater. 

It is well documented that carers of loved ones with dementia generally don't have anywhere near enough support to carry out their caring role. However, that situation can even more acute if your loved one is younger and your family is plunged into a completely different type of crisis around jobs, housing and the care of under-age children. It is also worth noting that dementia in younger people often progresses quicker than for older people. That isn't always the case, and many younger people live well with dementia for many years, but such wellbeing is usually in spite of rather than because of the level of support and care that they are offered from their local health and social care systems.

Issues around the progression of dementia are challenging enough, but adding in the potential requirement for residential care makes the picture even more complex. Many families find it difficult, if not impossible, to source a high quality care home that specialises in caring for younger people who are living with dementia. Mostly the only option is aged care, where a person in their 50's could be living with people in their 80's and 90's with very little in common in terms of hobbies and outlook.

Combine the factors of increased stigma, inadequate post-diagnostic support, challenges for family carers, likely progression of younger-onset dementia, and the lack of specialist residential care together and there is absolutely no doubt that if you are a younger person who is living with dementia you are facing numerous obstacles to living well. Even many of the therapeutic products that have been developed to help individuals who are living with dementia are based on reminiscence of eras that will mean little to younger people.

There are numerous societal pressures too. Because most individuals don't understand that younger people can develop dementia, if you are a younger person with dementia you face being disbelieved when you disclose your diagnosis. You may well become more isolated because friends of the same age cannot comprehend your diagnosis, and if you are working and find that your employment ends you can face huge financial pressures around paying your mortgage etc.

Your local services, if you have any, are generally aimed at older people (be they day centres, singing groups or dementia cafes), although there are some notable exceptions which I will cover at the end of this blog. Vital connections into peer support and international mentoring are often not made at the point of diagnosis, and so isolation is further compounded, added to by difficulties in travelling if your driving licence is taken away.

To say that the UK is badly failing younger people with dementia is something of an understatement. Why this group of people have been ignored for so long is, I suspect, due to that prevailing societal view that dementia only affects older people. If that is the case, then these latest figures should be a big wake-up call to our politicians and policy makers. Whilst specialist services may not be cheap, the cost of providing nothing is far greater, both for the health service and for every single family affected by younger-onset dementia.

Whilst the powers that be mull over that prospect, I couldn’t write a blog post about younger-onset dementia without mentioning some of the inspirational individuals and organisations who are leading the way for younger people with dementia. In their own way each challenges the stigma and discrimination faced by younger people with dementia, and together they form a powerful, collective voice. I hope that through them not only will society learn more about living with dementia generally, but that the particular needs of younger people living with dementia become better understood and more comprehensively addressed.

For anyone who is UK-based, there are a huge amount of resources on the Young Dementia UK website, including a regional breakdown of specialist support services for younger people who are living with dementia: http://www.youngdementiauk.org/support-across-uk. Young Dementia UK also have a list of blogs written by people who are living with younger-onset dementia, including Kate Swaffer and Chris Roberts, two very active campaigners for the rights of younger people who are living with dementia: http://www.youngdementiauk.org/blogs.

Although not exclusively working in the field of younger-onset dementia, I would also recommend checking out Dementia Alliance International, and the work of Norman McNamara, Innovations in Dementia and Dementia Mentors.

Until next time...

You can follow me on Twitter: @bethyb1886

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Reflections on 2013

Reflecting on a whole year is never an easy task. So many different events, milestones, and most importantly people have contributed to the last 12 months, each leaving me with that most precious gift – a memory.

My collection of memories for 2013 is fairly eclectic – I’ve spoken at conferences, run workshops, taken part in debates and appeared on radio and TV. I’ve become a Dementia Friends Champion and a member of the Dementia Action Alliance, as well as fundraising for Dementia UK and Alzheimer’s Society. I’ve become an Ambassador for BRACE, won ‘Best Independent Voice on Older People’s Issues’ at the Older People in the Media Awards, and made a film that was shown at the first ever G8 Dementia Summit.

Attending the Summit, and having tea with the Prime Minister afterwards, is arguably the most high-profile memory of 2013, but could it also be the one that has the most impact in the years ahead? I was asked after the Summit whether I thought the G8 would stick to their commitment to, “Find a cure or disease-altering therapy by 2025.” My answer is that it is up to all of us who are passionate about dementia to ensure that they do.

But for this, my last D4Dementia blog post of 2013, I want to share some memories with you that aren’t going to make huge headlines but will live in my heart and mind for a long time. So, in no particular order:

Meeting Kate Swaffer: Arguably the greatest privilege of the year, and certainly one that I’ve spoken about extensively since, was meeting Kate, an online friend who became a real life friend over a #dementiachallengers lunch in London. Kate’s grace, poise, humour, kindness and wisdom is inspirational - she also happens to be living with dementia. Kate, along with the lovely people who featured in the G8 films (Hilary, Trevor and Peter), are shining a vital light into what living with dementia REALLY means.

Moral of the story: Think myths and stigma about dementia and then think again.

Our Memory Café:  It’s been a tough year for dementia services in my area. Our Singing for the Brain (SFTB) closed down, and our Memory Café is mostly being propped up by people attending from the local care home. Alongside the sadness of hearing about the deterioration of some of our friends from SFTB, came the joy of seeing ladies from the local care home singing along to some of their favourite tunes at our impromptu music group at the Café. As one of the ladies said, “I thought I was only going to get a cup of tea. I didn’t know we would have singing too. Thank you so much.”

Moral of the story: Sometimes the small things in life bring the most pleasure (and don’t require huge sums of money to deliver).

My dad’s last care home: I’m somewhat ashamed to admit that since we cleared out my dad’s room following his death in April 2012, we hadn’t been back to the care home that looked after him in the last two weeks of his life. That isn’t because we didn’t want to, but despite the loveliness of the home I still picture answering the door to the undertakers and seeing dad being wheeled out of the home on their trolley. However, when I was asked if I could show a colleague from NHSIQ around a good care home, there was nowhere else I could have taken her. It was emotional to be back there again, but the huge smiles, hugs and warm welcome from the amazing people working at the care home reminded me yet again what a special place it is.

Moral of the story: For all the negative reports you hear about social care, there are far more good places and people that are never spoken about.

Finally…

People: I’ve met such a huge array of people this year – politicians, health and social care professionals, managers, civil servants, business owners, academics, families from all walks of life, and many inspirational people who are living with dementia. From the youngest to the oldest, from those who are extremely knowledgeable about dementia to those who feel completely baffled and are desperately seeking help, it’s fair to say that each and every person has managed to inform and educate me in some way.

Moral of the story:  We all have something to offer, and to dismiss others is to do ourselves a great disservice.

So, it is with my precious collection of memories from 2013 that I close this blog post by wishing you all a very happy Christmas and a peaceful, healthy and fulfilling 2014. My next D4Dementia blog will be in January, and I’ve taken the difficult decision that D4Dementia will become fortnightly from next year, so suffice to say it will take me somewhat longer to reach my next century of blog posts. What won't change, however, is my passion for raising awareness of dementia, tackling 'difficult' topics, and providing positive and practical advice.

Thank you all for your amazing support over the last 12 months.

Until 2014...

You can follow me on Twitter: @bethyb1886

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