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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Advocacy and dementia – A vital partnership

Dementia poses many challenges for those living with it or those caring for someone with it, not least getting their voice heard. Our wishes, views, needs and preferences are fundamental to our lives, but dementia can begin to erode our ability to articulate those clearly, and as the disease progresses, make it impossible to maintain a clear say in the decisions that govern our lives without some form of assistance.

For many people, this will involve their family stepping in. This was certainly true in my father’s case; we spoke up for him and his interests every day during his years of living with dementia. But what if your family are not willing or able to stand up for you, disagree with your vision for your future, or indeed you don’t have someone close to you who you trust to articulate what you are struggling to? Equally what if you are caring for someone with dementia and simply not being heard by the professionals who are taking decisions that directly impact upon you?

This is when advocacy comes into its own. An advocate is there to provide that voice for you. They are not there to offer their own opinions or second guess yours. Their role is to form a professional relationship with their client, and through that gain an understanding of what that person wants from the care they receive and the decisions that influence their life. Having done that, they are then tasked with imparting those views to ensure that every aspect of that person’s life and care has their needs and wishes at its heart.

People with dementia and their carers are at huge risk of marginalisation, leading to information being withheld, dignity and respect being eroded, decisions being taken for them and without their knowledge or consent, discrimination, inequality, difficulty in accessing health and social care services, loss of independence and opportunities for personal growth, and a general withdrawal from participation in all aspects of their life.

For a long time it was believed that people with dementia were stupid or in need of having their lives controlled. With the Mental Capacity Act and the Deprivation of Liberty Safeguards came a complete change of emphasis, with the prevailing view now being that everyone has capacity until it is proven otherwise.

This has given rise to far greater reliance on advocacy services, simply because we have finally acknowledged that people with dementia must have a voice, and if it can’t come from their lips then they have every right for it to come from someone else’s. Just how do you become an effective advocate for a person with dementia though?

Ideally advocacy is a service best sought in the early stages of someone’s dementia. If the person has had a diagnosis and is prepared to face up to the reality of having a progressive and terminal disease, then they can seek to make plans for their future. This would include considering who will speak up for them when they are no longer able to articulate their wishes as they would like to, and ensuring that if that person is to also be their carer, that they are properly supported in their role. Of course in reality, advocacy is often brought into someone’s life far later, and as a result a very skilled advocate is needed to ensure a correct representation of views that may be very difficult to ascertain by this stage.

The nature of dementia doesn’t make advocacy easy. The disease doesn’t have a rule book, presenting itself differently with each individual, and the fluctuating nature of symptoms can pose significant challenges. One day someone can appear far more lucid than the next, their opinions, views, behaviours and memory can change daily, as can their ability to make decisions, and obtaining consent for support may need to become a constant requirement.

Gaining an insight into how someone with dementia expresses themselves, and judging their level of understanding takes time and patience. Looking at someone’s history and any previous expressions of wishes are also key factors in navigating such a minefield. How much capacity they have on any given day can ebb and flow, and good communication skills are vital to ensure that an advocate is as effective and true as they can possibly be as the voice of someone with dementia.

Being an advocate is a role of huge responsibility, but also huge privilege. Giving a voice to someone who is losing theirs through dementia is a highly rewarding job, but also an increasingly vital one. With more people than ever before living with dementia, and having known people in my dad’s care home whose next of kin was a social worker or a solicitor, I have a huge appreciation for the need to ensure that everyone, no matter what their background, can get their voice heard. To put it simply, in good dementia care advocacy should come as standard.

Until next time...

You can follow me on Twitter: @bethyb1886

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