Bothered and bewildered by the portrayal of dementia

The portrayal of dementia on TV and in the arts has undoubtedly risen since my dad was living with dementia. From major soaps to numerous stage plays, dementia - it seems - is popular subject matter.

I’m not against portraying dementia when it’s done in a fair and equitable way that, crucially, educates. When I say educates, however, I don’t mean in the usual awareness-raising way, or by opting for the predictably negative portrayal that is perhaps most closely associated with dementia on TV or in the arts.

My biggest gripe against the Oscar-winning Still Alice was the total omission of any examples that showed how Alice and her family could have lived better with simple environmental modifications. For example, signage that would have assisted Alice to get to the toilet in time in her holiday home.

My interest in the portrayal of dementia in the arts was ignited again last November when I went to see 'Bothered and Bewildered', one of the numerous stage plays focusing on dementia. The official synopsis of ‘Bothered and Bewildered’ says:

"This is a comedy drama about one woman’s struggle with Alzheimer’s. The play follows Irene and her two daughters Louise and Beth as the girls lose their mum in spirit but not in body."

Comedy and dementia

Those with a keen eye on language will find that synopsis somewhat troubling, and being in the audience was certainly an uncomfortable experience for me. I’ve often debated with myself how I feel about the use of comedy in relation to dementia, and this play laid bare those internal debates again.

Whilst many others laughed, I couldn’t and didn’t throughout the whole play. That’s not to say that I don’t appreciate that humour has its place in dementia care - I sometimes laughed WITH my dad during his years with dementia, but never at him. 

Often people with dementia do things that to those observing them are strange - in these circumstances the first human response is often to laugh to conceal our own lack of intuition and understanding. But look beyond what you're seeing to consider the reasons behind why a person is doing what they are doing and suddenly you think very differently. 

You feel sadness that the person’s damaged brain is leading them to outward expressions that barely conceal what is likely to be an internal turmoil of acute confusion. You might attempt to try and walk in that person’s shoes to imagine how they are feeling, knowing that you can switch off from that state of mind at any time, whereas the person is living with their dementia 24/7.

Supporting family carers

The dubious comedy element in this play wasn’t my most overwhelming feeling, however. More than anything I wanted to jump on the stage and help Irene’s daughters to understand their mum better and cope better as a result.

During the play Louise and Beth were immensely frustrated with their mother, didn’t know how to handle her paranoia and hallucinations, ended up looking for their mother with the police when she’d left the house in the darkness dressed only in her nightie, and felt driven towards seeking a care home place for her. 

The classic unpaid family carer scenario of trying to juggle work with caring responsibilities was also explored, with one of Irene’s daughters giving up work to try and care for her mother. The only professional support shown in the play came from a doctor, who for the purposes of the play asked far more questions than most doctors I’ve ever met. Despite this, however, he offered nothing by way of tangible practical support.

What needs to change

I accept that the portrayal of Louise and Beth’s struggles are entirely reflective of the experiences of so many families. Indeed, there were elements that reminded me of my experiences with my dad, but my frustration is that we don’t move forward from this.

In January 2020, every person with dementia and their family still cannot access universal, comprehensive post-diagnosis support, nor do they have access to their own Admiral Nurse, and most will find that care and support largely relies upon untrained and unsupported family carers until, more often than not, a crisis occurs and professional support is urgently needed.

It’s a disgraceful reality facing numerous families, and the portrayal of this element of a family’s experience of dementia in ‘Bothered and Bewildered’ is perhaps all the more striking when you consider that this play wasn’t written recently - it was first performed in October 2014, proving that so little has changed.

I’m sure that dementia will continued to be portrayed on TV and in the arts in the years ahead, hopefully not just by showing the difficulties, the frustrations and the sadness, but also by showing the environmental changes that can make a difference in someone’s home, the meaningful professional support (Admiral Nurses etc) that can enable families to cope better, and (fingers crossed) even progressive initiatives like peer support groups (DEEP and DAI) and training for family carers.

If we could have all of that, with less focus on laughing at the person living with dementia, we’d be making progress. 

Until next time...

You can follow me on Twitter: @bethyb1886
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A celebration of what is possible

As another September brings World Alzheimer’s Month, there is always the temptation to write a blog that points out how much we still need to do to improve awareness, care and support for people who are living with dementia and their families and friends.

For this World Alzheimer’s Month, however, I have cause for celebration. Over 6 years ago I began D4Dementia to, “Provide support and advice to those faced with similar situations (to those we faced with my dad), inform and educate care professionals and the wider population, promote debate and create improvements in dementia care.” My inspiration was to share some of the positive aspects of my dad’s life and for others to learn from them. As I wrote more posts, I also shared aspects of my dad’s care and support that weren’t good enough, again with the intention that others may learn something. As the years have gone by I’ve diversified from blogging to do more and more training and mentoring to make that mission real, and in September 2018 my educational work has achieved the quality mark of Skills for Care Endorsement.

For many people who already have endorsement or another accreditation this may seem routine, but for me it’s something I never imagined was possible. I’m not an academic, backed by a major educational institution. I’m a former carer to my dad, and everything I’ve done since he died has been based on our experiences - a regular family turned upside down by dementia.

I wanted to create a legacy for my dad that wasn’t about mourning his loss however keenly I still feel it, or about beating a drum of hate for the people who let him down so badly when he was at his most vulnerable. I wanted to create positive change - I felt passionately then, as I do now, that if I could help just one person living with dementia, or one family supporting a loved one with dementia, or one professional working in dementia care and support, to find the information and advice that they needed then I’d done something amazing.

I’ve since read and heard similar aspirations from so many other people affected by dementia, most notably recently from reading Wendy Mitchell’s phenomenal book, ‘Somebody I used to know’. The desire to help just one person, to scatter crumbs of hope and positivity, however small those crumbs might be and however uncertain you are of how far they might travel, gives those of us who’ve had any sort of experience of dementia a feeling that there is something good that can come out of a diagnosis and a reality that changes life forever, and in my dad’s case robbed us of him far earlier than we might otherwise have been.

Reflecting on my endorsement as a training provider, it isn’t just for me. It’s not just for my dad either, although I hope and believe that he would be very proud. It’s for every person who’s ever felt a passion to use their experiences of dementia, or any other health condition, to help others but have wondered if A) anyone would be interested in their experiences, and B) whether they have the courage or confidence to share them.

I think we are conditioned from an early age - thanks to the school system - to view education as something delivered by people with far more qualifications than us in institutions with a track record of producing learning that is intended to equip students for whatever life holds for them. Little value is placed on lived experience, which is why I always dismissed applying for any quality mark for my training as something unattainable. It's only thanks to the encouragement of my family that I made that first tentative enquiry.

I hope my experience of endorsement shows that lived experience is now being recognised for the value I’ve always believed it has. Since I began my training and mentoring work I've known from feedback - and most importantly results -  that what I was doing had immense merit and quality, but going through a rigorous process of proving that to an organisation like Skills for Care means that it isn’t just me saying what I do is good, or my lovely clients or colleagues writing me testimonials (which I’m extremely grateful for) - it’s an independent and highly-regarded organisation saying it.

More than me proving a point, however, I hope it encourages others to realise that personal experiences have the power to educate to a level that is worthy of accreditation. Earlier this year I read with immense interest about the training offered by York Minds and Voices with a course entitled: ‘A good life with dementia.’ This is a course, delivered by people living with dementia for people living with dementia. A simple but groundbreaking concept.

This course embodies the peer support element that I believe is absolutely vital in good post-diagnostic support, and I was fascinated to follow its progress. I very much hope that inspired by what York Minds and Voices did earlier this year, training courses like this will become the norm – created and delivered by people living with dementia, financially supported by health and social care organisations and commissioners, and ultimately with the chance to become accredited to show the world their true merit. There can be no greater educators about dementia, or any other health condition, than those living with it.

I am committed to including the experiences and voices of people living with dementia in my training, whether it’s through quotes, showing films, or I hope one day with more personal involvement from people living with dementia. And of course my dad’s experiences are interwoven throughout everything I do - you might think that 6+ years after his death they would have become irrelevant, but in many respects so little has meaningfully changed in care and support, attitudes and beliefs, experiences and outcomes.

My thanks go to all of my clients and colleagues who have supported my application for endorsement, to Skills for Care for considering and ultimately endorsing my application, and to everyone who reads this blog, follows me on social media or has championed my work. Most of all though, I thank every person I’ve met living with dementia and their family members who have taught me something about their lived experience, and of course to my dad. Those last 19 years of his life featured some of the toughest challenges I have ever - and probably will ever – face, but I learnt more than I ever imagined possible, and the privilege of keeping my dad’s legacy alive by sharing those lessons is something I hold very dear.

Until next time...

You can follow me on Twitter: @bethyb1886
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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
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Co-production in health and social care - It really isn't rocket science

Last week was the first ever National Co-production Week, identified on twitter as #CoProWeek. Organised by the Social Care Institute for Excellence, the creation of this awareness raising week marks an important milestone in recognising that if you work in health or social care, it's actually a pretty good idea to listen to, involve and continually work with the people who are using your service(s).

Purely co-incidentally, the start of National Co-production Week also saw the launch of a report I was involved in creating with Carers Trust that looked at the 'Care Act for Carers: One Year On' (PDF). Amongst our recommendations was an explicit remit (on page 23) tasked to one of the pioneer co-production organisations, Think Local Act Personal, to involve carers (people who care, unpaid, for a friend or family member) in services:

"Think Local Act Personal should work with carers to devise and offer training and materials to support practitioners to work with carers to co-design personalised support."

We also reiterate the importance of ‘co-design’ in our 2018 ‘wish list’ (on page 25):

"Social workers and other care practitioners can show that tailored support plans are routinely co-designed and kept under review with carers."

The history of co-production

'Co-design', or 'co-production' may sound like modern day jargon (they are unpopular descriptions with many people I know), but various incarnations of the basic principles of involving people who use services, and their carers and families, in how services are designed, created and run have been around for many years.

If anything, that is my personal disappointment. Through my work I’ve met stalwarts of the 'co-production scene' who have been co-producing for an incredibly long time and yet they feel little has changed on the frontline. In my view, that lack of change isn't a reflection upon those individuals at all, but more about how our health and social care systems respond to those people and the need to challenge the status quo.

Historically, we’ve been far too keen on ‘doing things to people’ rather than truly involving people in their own care and support. We like to tell our fellow citizens how things will work and what will happen to them, being prescriptive and precise, and expecting them just to go along with it. Their own opinions have been seen as irrelevant, perhaps even dangerous, and of course 'professionals know best' anyway. In other words, citizens (patients, service users, carers and whatever other labels you want to affix to ‘Joe Blogs’) should be ‘seen and not heard’.

In June 2012, I wrote a blog entitled ‘How do you make good dementia policy?’. Much of what I talk about in that blog is about co-production, except I didn’t call it co-production then. To me it was just the simple principle of involving people, which I summed up in this quote:

"My view is that you need those with direct past and present knowledge and experience of dementia to be at the forefront of policy making, privately and publically."

Tokenistic involvement isn’t enough

I have a fundamental belief that within health and social care, there is still an arrogance amongst many leaders to even involve citizens in their work, never mind truly embracing co-production and embedding it within their organisations. Often involvement is tokenistic, piecemeal and descends into glorified talking shops, which are then evaluated poorly and deemed pointless.

Budgets to support true co-production rarely exist, or are extremely limited. Interestingly, these funding arrangements are always decided by people employed by organisations, and I do wonder if being in the safely of a salaried job stifles the desire to engage and create beyond your own job description.

That may sound harsh, but given that in 2012 I was writing about the need to involve people who use services and carers in those services, I simply haven't seen enough innovation to justify a more positive assessment. If we could get to a stage whereby the viability of health and social care services was judged by how well they engaged with the people using their services, and their carers and families, I suspect a rapid improvement would soon follow.

Current, classic examples of organisations not engaging are seen on the conference scene, where too often I still see programmes for events that don't include the voices of experience. From the knowledge I have through my work, I don't believe that enough local authorities co-produce their services with their citizens, nor do NHS trusts or social care providers, and likewise for national government.

And yet, in that 2012 blog post I made the value of lived experience crystal clear when I said:

"The greatest educators are people who have learnt from their own experiences."

Time to change

I am impatient for change, I would freely admit that, and those who are embracing the true principles of co-production don't get enough praise for their work. For everyone else, I come back to this quote from that 2012 blog post:

"If you want to know about frontline warfare, you ask a soldier. If you want to know about famine in Africa, you go to Africa and ask the people who are starving. If you want to know about dementia, ask the people living with it and carers past and present who have dedicated their lives to understanding dementia."

For dementia, read any condition, any service, any experience. There are always citizens to ask about their health and care, always something to learn from listening to them, and always a way of meaningfully and fully engaging them in how you serve them now and in the future. It really isn't rocket science.

Until next time...

You can follow me on Twitter: @bethyb1886

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Dementia takes... and dementia gives

The start of a new year is a time that many people find themselves in a reflective mood, and I have more cause than most to feel that way as 2016 kicks off.

As some readers may know if they follow me on social media, I became a first-time mum last November.

A very proud mummy to a very beautiful daughter, Sophie Rae, born 21 November #totallyinlove pic.twitter.com/gUdhBHlWww

— Beth Britton (@bethyb1886) December 4, 2015

Parenthood opens up a whole new world, and inevitably makes you think about family life in a totally different way. Amongst the flurry of people eager to meet the new addition, you inevitably think about those who will never meet your child, and for me the person at the forefront of my mind is of course my dad. 

In the film I made for the G8 Dementia Summit I said of dad’s dementia: 

"It’s robbed him of opportunities that, obviously, now he will never have"

When I said this I was particularly thinking about potential future grandchildren. My dad loved children, and would have adored being a grandparent. The look on his face had he had a newborn grandchild placed in his arms is one I can picture vividly in my imagination, and I feel a huge sense of loss that I cannot experience that in real life.

Dementia has robbed us of that opportunity, that moment that would have become etched into our family history and captured by camera to preserve forever. The reassurance that comes from feeling dad's constant presence is a consolation, but it doesn't replace the real thing and never will. For that I hate dementia and I hate the fact that by developing it, dad's life was limited and, in my view, ended before its natural conclusion.

In the midst of those feelings it's hard to see positives, but they are there. Dad's legacy is one our daughter can learn from and be proud of. Dad's life with dementia left a story for me to tell that has much to inspire an enquiring mind as it grows and develops, and nothing will make me prouder than having our daughter in an audience one day when I'm speaking at a big event. I hope that even if she doesn't want to follow in her mum's footsteps in her working life that she will see the good, the kindness and the love that goes into what I do every day.

None of those things will replace learning from my dad's wisdom or having his cuddles, but she will come to know and appreciate everything that made him such a special man. In that way, dementia gives a little - it gives her lessons to learn, kindness to emulate, and a foundation to lead her life embodying the qualities my dad so admired and strove to teach me every day - humility and respect.

Since I would give anything to be able to introduce our daughter to her maternal grandfather, it makes me very sad to think of the many children that could be part of the lives of their older relatives and aren't. Without any reservations whatsoever I would have ensured our daughter was part of my dad's life during his years with dementia, including taking her to visit him during the nine years he spent in care homes.

I am certain that the interaction between the two of them would have been magical. Children don't judge people with dementia in the way that adults often do. Babies in particular have an innocence and a vulnerability that could never threaten, intimidate, or make a person with dementia feel inadequate or less of a human being. There is so much that we as adults could learn from the unconditional love and trust a tiny baby gives us, and use those lessons to impart the aforementioned qualities into our interactions with others, particularly people who are living with dementia.

My memories of my dad, and the many things I learnt from him both before and during his life with dementia, will undoubtedly influence the kind of parent I am and will grow into being in the years ahead. I can't help feeling that those lessons belong in some way, shape or form in parenting classes - proof, if it were ever needed, that intergenerational learning and intergenerational work in dementia awareness has never been more relevant, or more needed.

Until next time...

You can follow me on Twitter: @bethyb1886

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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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Do something new... and learn something new!

Welcome to the fourth of my seven blog posts for UK Dementia Awareness Week 2015.

This year's Dementia Awareness Week centres around the theme of doing something new for people with dementia, under the mantra that ‘Life doesn’t have to end when dementia begins’. For many people living with dementia in care homes, however, a lack of opportunities to have meaningful occupation and activity, or even just enjoy the simple pleasures that many of us take for granted, can lead to life feeling like it really has ended.

Over this Dementia Awareness Week (DAW2015) I want to look at some of the positive things relatives and staff can do to enhance the lived experience of people with dementia in care homes. They may be new things, or they may be old favourites, but they all share in the ability to turn a boring day into something a little bit more special. 

Day 4: Learning

Very few people associate education with people who live in care homes. The common misconception is that individuals who move into care homes have learnt all they are going to learn and are either incapable, or will soon become incapable, of learning anything new. If you ever wanted a greater example of how to debunk these myths, however, then look no further than this inspiring film from ‘Learning for the Fourth Age’.

Learning is both possible, and in fact highly recommended for people at any age and stage of life. For people who are living with dementia it can help with self-esteem, mental agility, confidence, independence and offer a really tangible opportunity to enhance wellbeing. Learning is also a great way to bring families together, with education bridging gaps between generations and enabling younger relatives to teach their older loved ones new skills that they have already mastered (perhaps with technology, a topic I wrote about for yesterday’s blog), and indeed vice versa – never underestimate the things you can learn from spending time with older people.

Education in care homes really can be anything from gardening to pottery, painting to learning a musical instrument, reading books to learning songs or even a new language – the only limit is your imagination and the interests the person with dementia, their family and care workers have. If your budget allows you may consider bringing in external tutors who can provide specialist learning support, but don’t ignore the often untapped talent that lies within the many individuals who make up a care home. Residents, staff and family groups are often very diverse in their skillset and interests, including cultural diversity and the ability to teach skills learnt in distant childhood lands that you would otherwise have to travel many miles to experience.

Whether you decide to pursue group learning or one-to-one classes, just make sure you never forget the power of people with dementia as educators in their own right – with rich life histories, you might just be surprised what people remember how to do and could teach you!

More information, tips and advice on learning can be found in my Huffington Post blog:

Never stop learning: http://www.huffingtonpost.co.uk/beth-britton/never-stop-learning_b_5723358.html

Next post on 21 May 2015.
Until then...

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