Carer's questions - Does everyone feel that they can’t cope?

Welcome to the fifth of my seven ‘mini’ blogs for UK Carers Week 2014.

As regular readers of this blog know, I cared for my father for 19 years during his vascular dementia. For the majority of that time, however, I never considered myself a carer - just a daughter looking after her dad. As I said in my G8 Dementia Summit film, "You become a carer, but you don't realise you've become a carer."

For UK Carers Week 2014, I want to focus on questions carers often ask me, and indeed many questions I frequently asked myself during my father’s dementia. 

Day 5 - Does everyone feel that they can't cope?

Possibly not everyone, but certainly most carers feel like this during their caring role and often feel like it frequently. I personally don’t ever recall meeting a carer who at some point didn’t feel that they weren’t coping, and that includes carers from many different backgrounds. 

In my father’s 19 years with vascular dementia I struggled when big decisions had to be made, mostly health-related, or when we were waiting on the decisions of others, usually healthcare professionals. The absolute worst times, however, were when dad was seriously ill in hospital – as a carer you feel helpless and often very excluded from what is happening to your loved one. In those times I honestly wondered how we would get through it – the fear of losing dad was huge and so very real.

It’s easy to believe that you are the only person feeling like this. When my dad was alive I wasn’t involved in the online ‘carer community’ at all, but having become connected to it through my work I can see how valuable it is. A huge number of carers contact me through social media seeking advice, and I’m always very happy to help where I can. I also regularly look at the #dementiachallengers hashtag on twitter - it's a place where anyone and everyone can come together to talk about dementia.

One of the most powerful testimonies of the power of social media for carers comes from the wonderful Sally who tweets as @nursemaiden. She engaged with twitter in the last hours of her father’s life, looking for reassurance with the palliative care that she and her mum were providing. Why you might ask? Simply because twitter offered her instant and informed advice thanks to the huge number of experienced professionals on the site.

A small plea from me though – for all that is great online, and there is a huge amount, we must never forget people who aren’t online. Having a computer and broadband (plus someone to teach you) isn’t an option for everyone due to cost, preference or other associated reasons. It is those people who are possibly feeling like they can’t cope most of all – another great reason why we should all look out for our neighbours and friends more, and signpost to helplines and printed materials.  

Further reading:

D4Dementia: 'Caring for carers'

D4Dementia: 'Be inspired, be very inspired'

D4Dementia: 'The carer's job description'

All D4Dementia blog posts for Carers, including many with tips and advice on coping with particular aspects of your loved one's dementia

External links: 

Carers Direct helpline: http://www.nhs.uk/carersdirect/carerslives/updates/pages/carersdirecthelpline.aspx

Admiral Nursing Direct: http://www.dementiauk.org/information-support/admiral-nursing-direct/

Dementia Action Alliance Carers' Call to Action: http://www.dementiaaction.org.uk/carers

Carers UK: http://www.carersuk.org/

Carers Trust: http://www.carers.org/

Carers Direct: http://www.nhs.uk/carersdirect/Pages/CarersDirectHome.aspx

Carers Week: http://www.carersweek.org/

Next post on 14 June 2014.
Until then...

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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Good to talk?

Having had 19 years of first-hand experience with dementia, I always find it very interesting listening to other people talking about it. By far the most powerful accounts are, for me, those that come from people who are living with dementia, those who are looking after them, and carers whose dementia journey with their loved one has come to an end.

Perhaps that is because of my background and close personal involvement in caring for my father, or maybe it is because there isn’t a theory, concept, project, service, product or sound bite that sums up dementia, explains it, makes it real and shows us a way forward like listening to people who actually know what living with dementia REALLY means. Tales of day-to-day struggles coupled with humour, honesty and warmth are, in my opinion, the greatest education tool for anyone working in dementia care who lacks their own personal family experience of this disease.

I will never look at dementia from a ‘professionals’ point of view. I am not medically qualified, I am not an academic, and incidentally I am not seeking to become either (probably a little too long in the tooth now anyway!). In that regard I suspect that I was in the minority at the 7th UK Dementia Congress, but then again I was also in the advantageous position of listening to people who are living with dementia talk and seeing so much of my dad in them from his earlier years with this disease.

Back then no one really spoke about dementia – now everyone is talking about it. The awareness is fantastic but I do not want dementia to just be another trendy bandwagon to jump on, or for real progress in care to be drowned in jargon, with business people trying to out-do each other for the latest, greatest idea. If there is one piece of advice I have for anyone in dementia care, it is that in my experiences with my father and many others the best aspects of good care are also the simplest.

That does not mean, however, that we cannot embrace new ideas. For me, two of the most enjoyable presentations I saw were from professionals who had come from overseas to explain how they are enhancing the lives of people with dementia. Randy Lee Griffin from the United States spoke about a program to bring the joy of birds, bird-watching and nature to people with dementia – a brilliant idea that reminded me of my father’s love of the great outdoors, how much he enjoyed watching and hearing birds whilst outside, the CD of birdsong that he had in his room, and a life-like soft toy cockerel that his hands spent many hours examining.

Yolanda Brand from South Africa detailed how her care home have enabled residents to keep in touch with their loved ones via social networking – a fantastic idea, not designed to in any way replace visiting or personal interaction, but to enhance communication when families are far away. To me it spoke volumes about the importance of families in dementia care, something that I feel needs to be emphasised far more than it is. It is vital to not only acknowledge and support those who are caring for a loved one with dementia and the many family members who are touched by this disease, but to tap into the unique knowledge base that they offer to professionals and policy makers (something that I wrote about in this post on good dementia policy).

For anyone reading this wondering if all the talking really changes anything, I would say that no matter how good talking is, action is what really matters. Many people are striving to do excellent work and my many colleagues within Dementia Challengers (#dementiachallengers) are testimony to that, but my thoughts during the Congress were predominantly focused on the people who were not there. Those whose dementia meant that they could not attend, those who were caring for someone with dementia whilst we were all talking and listening, those who were hearing a dementia diagnosis from their doctor, and those who were mourning the passing of a loved one as their dementia journey ended. They are and should always be the focus of everything anyone does in dementia care.

Should you need inspiration to keep that focus, I hope my last tale from the Congress will provide it. I was in the reception hall having just arrived when I met, via the person I had travelled with, one of the speakers that day. Introduced to me as Trevor, he greeted me warmly, shook my hand and kissed me on both cheeks. We exchanged a few words and then he left. When I met him I thought he was one of the many professional speakers at the event. I only discovered later, as he took to the main stage, that he was living with dementia.  A moment to reflect, perhaps, on who the real experts are.

Until next time...

You can follow me on Twitter: @bethyb1886

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So how much do you know about dementia?

Awareness is something that is talked about extensively in healthcare. In fact it is fair to say that those of us working in this field are pretty much obsessed by it. Days or weeks designed to highlight particular conditions are important for those wanting to get their message across, but for me every day is an awareness day, offering an opportunity to educate someone who doesn't know about dementia, inform professionals who work within dementia treatment, care or policy making, and most importantly of all, help and support those who are going through their own experiences of dementia.

By far the most challenging aspect of my work comes from getting the message about dementia across to people who do not have any experience, understanding or concept of dementia. They may have some outdated ideas about 'senility', some ‘facts’ they believe that are quickly proven to be fiction, or some very dismissive ideas about how someone with dementia is not worth bothering with, but nothing that represents real life for people living with dementia or their loved ones.

For some people dementia, or as many refer to it by its most common form Alzheimer’s, is actually something to joke about. A quick search on twitter under #alzheimers will soon uncover many people, especially young people, who use this hashtag on tweets about things that they have forgotten, or done that they should not have, to indicate humour. This perhaps sums up many of the wider perceptions that are still out there about dementia, so let me bust a few myths:

• Dementia is not a normal part of ageing (types of dementia are caused by diseases of the brain). 
• There is so much more to dementia than just forgetting things (dementia symptoms are multi-faceted, vary hugely and are individual to each person).
• Dementia doesn't just happen when people get older (young onset dementia, defined as dementia in someone under 65, is increasing and dementia can even occur in children, although this is rare).
• People with dementia are still people, not a disease. 
• Dementia is not contagious. 
• Those living with dementia still want to lead active and full lives and not be locked away and forgotten about (most people want to be cared for at home not in communal establishments).
• People with dementia can make a positive contribution to society if supported to do so.
• You can live well, or live as well as possible, with dementia.

What is important in the long-term care and support of people with dementia is primarily personalisation, compassion and dedication. Personalisation because everyone is an individual and should always be recognised as such in every aspect of their life and care. Compassion because care without it is not care at all, and dedication because dementia is long-term, progressive and terminal, requiring specialised understanding, continuity and commitment to excellence in caring for someone with it.

In the case of myself and my family, we never saw my father as a victim, or considered ourselves to be such. Dementia, whilst cruel in the way it strips back a person’s abilities, can never take their spirit or soul, and with the right therapies glimpses of this are possible until the very end of their life. I have written previously about how we never sought sympathy; what we have always wanted is understanding, acceptance and a will within society to confront dementia and defeat it, and I believe this is true for many people in the same position.

What does dementia teach you? 

• To appreciate the smallest things in life, since they become extremely precious (a simple hello from my dad in his final few months brought a massive smile to my face). 
• To make the most of every day (good days and bad days become an ever-present feature with dementia, and when the good ones come along you want to make the most of them). 
• To never give up (yes there isn’t a cure yet, but there is a lot you can do to make someone’s life with dementia a more positive experience than it would have been ten, twenty or thirty years ago). 
• Finally, in my case, to share our experiences with the world (everything my dad went through is there to inform, educate and influence others. He would have wanted to make a real and lasting difference, and hopefully through me that will be his legacy).

This World Alzheimer's Month, play your part in raising awareness, familiarise yourself with what I've said above, and if your life has never been touched by dementia to date but is in the future, remember the guiding principles in this blog post. Guidance never stands still, it grows as we learn and develop ideas, but the fundamental need for care, dignity, respect, and to be valued and loved never change.

Until next time...

You can follow me on Twitter: @bethyb1886

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Going for gold

As the medals have accumulated for Team GB at this year’s Olympic games, I have often caught myself wondering how amazing it would be if we could translate the dedication, talent, will-to-win, perseverance, commitment and self-belief that our sports men and women have shown at London 2012 into the people whose decisions, policies, beliefs and understanding (or lack of it) affect the lives of the most vulnerable in society.

You cannot work in dementia care, be a policy maker or decision taker and consider it to be just be a job, something that you do to earn your living and then walk away from. If you do, then you are in the wrong profession. If our sports people did not go the extra mile, care that little bit more, put in the hours and believe in better then they would not be where they are in the medal table.

One of my greatest frustrations is that while many talented people work in jobs that shape the current state of dementia care and influence the future of it, too many do not feel the passion for the subject that people like myself, and the many #dementiachallengers out there do. Conversely, at the grassroots, many people who work in dementia care feel a huge sense of pride in what they do, but are often restricted by protocols, policies and procedures that dilute their passion and knowledge so much that they are prevented from bringing their true care and compassion into the things that they do.

Passion is often mistakenly identified as being uncontrollable, unquantifiable and therefore a risk to stability, but it is needed more than any other quality when you are looking to transform the lives of those living with dementia. As people struggle on at home without the help, support and advice that they need, as they languish in acute hospital beds while bureaucrats argue over the care package that they should receive and how it will be funded, as they die needlessly because they are not properly cared for in a residential setting that does not meet the standards it should, is not staffed correctly or lacks the most basic understanding of dementia, passion is what is needed to drive up standards, change systems, improve the rates of diagnosis and the outcomes for people afterwards, make therapeutic care choices fundamental to everyone’s journey with dementia, support families and friends, educate the wider community, engender respect for the person, and provide dignity, compassion and personalisation in every aspect of dementia care.

Passion is about caring so much that you would go to extraordinary lengths to nurture and protect; qualities that are essential when you think about caring for people with dementia. Passion is also about understanding – having a real, intrinsic feeling for what life is like for someone with dementia and their loved ones, sharing their pain and their joy, striving to help them have the best life possible, and most importantly of all, seeing the person, not the disease.

For many people with personal, hard, honest and painful experience of dementia, their passion also has to translate into fighting for what their loved ones need. Often in the most difficult circumstances, where their relative’s future, even their life, hangs on the decisions of others, there is nothing more frustrating than knowing that you must convince people with no real passion for dementia, who work within frameworks devised without passion for dementia, to understand why you care so very very much.

Numerous people in authority talk about dementia having never personally experienced it. Many professionals work in influential positions for health and social care organisations, charities, government and the like who could walk into any job in their chosen sector; the fact that they work influencing the lives of people with dementia is more by accident than design. Changing this culture, and getting the voices of people with true passion into places of most influence, will transform how dementia is viewed, treated and understood.

Too many people still see dementia as a lost cause. It is true that changing perceptions takes time and patience, but it must also be borne in mind that for the people living with dementia right now and their families, they are left to struggle on, often in the dark about the journey they are on, feeling lonely and isolated, even ostracised from society. Dementia, because of its complexities and the individual nature of everyone’s journey with it, will never be able to have a one-size-fits-all model of care; something that everyone with a true passion for dementia recognises instantly. Just like our sportsmen and women with their Olympic triumphs that have given the whole country such a huge sense of pride and achievement, their journeys to gold have been individual to them, born from the passion that they have for their sport. The journey to gold-standard dementia care in the UK is still some way off a podium finish, but would be an even greater achievement for our country.

Until next time...

You can follow me on Twitter: @bethyb1886

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What makes a dementia friendly community?

When I last wrote about the UK’s dementia challenge I said that we needed to make our country a place where people who are living with dementia can lead the lives they deserve to, rather than the ones foisted upon them by prejudice and ignorance. In practice, this means every community becoming dementia friendly, embracing this most cruel of diseases, and seeing the people who have developed it as an asset, rather than a problem.

It requires a change in attitudes, approaches and opinions that will not happen overnight, and realistically some people will never be convinced by the argument that everyone with dementia deserves to live well with it, rather than simply die from it. However, given the current numbers of people with dementia, and the predicted number of cases for the future, many more lives are going to be touched by this disease than a lot of people may even want to contemplate at the moment, making this the time for the UK to become both more aware of dementia and more friendly towards it.

At every stage of dementia, from pre-diagnosis to end-of-life care, every service accessed by people with dementia and their carers needs to have an intrinsic appreciation of what dementia means, how it affects everyday life, and what can be done practically to make using services easier. For the wider community, it is about adopting the key principles of compassion, dedication and personalisation to ultimately become more dementia friendly.

None of this is achievable without widespread awareness and education of dementia across all generations, from education in schools to campaigns targeting people in their 20’s, 30’s and 40’s whose parents or grandparents may be showing signs of dementia, and finally to supporting people in their 50’s, 60’s, 70’s and 80’s who may have dementia themselves, be trying to look after a partner with dementia, or are concerned about the impact dementia could have on their life if they develop it.

To do this community healthcare services, community groups, social and charitable groups, local and national media, and technology like social media, apps etc need to pull together as one to reach as wide and diverse an audience as possible. Realistic but also positive coverage of dementia that informs people, rather than terrifying them, will prove that this disease is not a black hole of nothing, and that living well with it is an attainable desire for everyone with dementia and their families and friends.

At the heart of all awareness campaigning must be people with first-hand experience of dementia, whether they are currently living with it, caring for someone with it, or have done in the past. I have written previously about harnessing the power of people’s first-hand dementia experiences to appeal to the hearts and minds of the wider population, and that will never be more important than in the quest to make dementia friendly communities. These people are the pioneers who can lead the way in helping the whole country feel as passionately about dementia care as they do. Small seeds of change do already exist within social media, with the Twitter hashtag #dementiachallengers uniting people, like me, in this common goal.

As I have often touched on, whilst I wish my father had never had dementia, his years with it gave us as a family many memories and experiences that changed our lives in a positive way, finding hidden depths to our feelings and resources, and giving us the privilege of supporting a wonderful man in his life with dementia that, whilst he would have hated it, also gave him the opportunity to show great courage, dignity, good humour and warmth in living with it.

Although much has changed since my dad’s life with dementia began, there are still significant barriers for people living with dementia today. Access to services is still very much a postcode lottery, people are often not informed or supported regarding what they are entitled to, there is not enough emphasis on providing therapeutic dementia care (through the arts for example), not enough access to some of the great design and technological advances that can improve the lives of people with dementia and those who look after them, and there are many day-to-day obstacles to overcome. Even a simple trip to the shops, or going out for a coffee, can turn into people staring at you, whispering, being unhelpful, or refusing to make allowances for the needs of someone with dementia, and that is assuming you have the resources to even get out of the house or care home to begin with.

So much can be done to remedy this, however. Organisations can train staff to become dementia aware, not just to assist customers but also as part of the pastoral role good employers should adopt in supporting their staff in their personal lives, recognising that many of their employees will have family, friends or neighbours with dementia who rely on their help. Improving customer advice and liaison roles to encompass helping people with dementia who may be disorientated, confused, aggressive or upset, simplifying signage to help people with dementia to find their way, supporting people with financial transactions, adapting menus to reflect the needs of people who require soft or purred food because of a swallowing problem, and providing toilet facilities that help carers to change incontinence pads in privacy, are just a few simple but important issues businesses can address to become more welcoming for, and understanding towards, people with dementia.

It is not just down to businesses and service providers to make our communities dementia friendly though. If everyone understood dementia, recognised the symptoms in family members, friends and neighbours, and provided a supportive environment where we look out for each other, help with simple tasks, are able and willing to call for professional help when it is needed (and for that help to be forthcoming and appropriate), and took the time to offer kindness, a listening ear, a compassionate touch and a caring outlook, then all vulnerable people, not just those with dementia, would be able to live far more fulfilling lives that offer quality and richness.

Ultimately dementia friendly communities will only exist if there is a shared will between the people, policy makers, media and businesses to make this happen. Creating communities where people with dementia are welcomed, supported and enabled to get the maximum out of life will require flexibility, forward-thinking, huge commitment and above all instilling within our society how valuable people with dementia are.

Recognising the contribution people have made in their lives prior to having dementia, celebrating that, tapping into it and helping them to be as active, healthy and happy as possible during their life with dementia will need the rest of us to show the same courage and determination that my dad, so many before him and so many right now, are showing in battling their own personal dementia challenge.

Until next time...

You can follow me on Twitter: @bethyb1886

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How do you make good dementia policy?

Dad and I, 15 October 2011, a very happy day

Having spent 19-years graduating in dementia, I can honestly say that I think I know dementia pretty well. Its highs and lows, the surprises and quirks, the sadness and pain, and the endless battles you fight for the care your loved one needs and deserves whilst endeavouring to keep yourself from falling apart! You know how you would like the support systems to work, you know what you’d change if you could, and you would go above and beyond to make the lives of everyone going through that same journey as you a little bit more bearable.

The fact that I can say that there are highs at all may leave some people rather baffled, but dementia isn’t a black hole of nothing. We focus so much time on what is lost when someone develops dementia, but there are occasionally unexpected moments of tenderness and happiness too.

Take for example my dad; he was generally never a man to show huge emotion or emotional engagement. He was a loving and caring father, but not someone who showed their feelings very much.  Yet one afternoon, as I sat with dad in his care home in a state of fairly obvious upset over a boyfriend (not for the first time where this particular boyfriend was concerned I might add!), dad’s kindly smile and request to know what was wrong was so very touching, and so very un-dad like. Equally his, “Thank you for everything,” said so clearly and with tears in his eyes as I kissed him goodbye one Christmas Day, totally crumbled my steely resolve to have a good, British, stiff upper lip. Put both these moments in the context of dad’s very limited communication skills, and you see why their impact was so keenly felt and so totally unforgettable.

Yet speak to most members of the public who have no experience of dementia and they will probably paint a picture of huge negativity, if indeed they have much concept of dementia at all. They may also have very little appreciation of how dementia impacts upon the life of both the person living with it and their nearest and dearest. Yet I would venture to suggest that most people have huge capacity for learning more about dementia, showing kindness and compassion to people living with it, supporting improvements in services and attitudes and, hopefully, have a demonstrable desire to avoid developing dementia so that we may have some hope of reversing the very alarming predictions for future cases.

So how do we change perceptions, educate, and encourage everyone to bring positivity to the lives of people living with dementia? 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.

Without that personal touch, the policy you end up with may be scientifically perfect, clinically expert, and from the point of view of politicians, business leaders and the health and social care sectors achieving a level of awareness that reflects their own expectations, but it lacks human emotion, and without true appeal to the hearts and minds of society as a whole, it will only ever achieve limited success.

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. We are the people who are more than just the eyes and ears; we are the lifeblood of the campaign to raise awareness, challenge dementia, and make every community the best place it can be for someone throughout their journey with dementia.

The greatest educators are people who have learnt from their own experiences, and in the case of carers past and present, from experiences that they never anticipated or welcomed but that they embraced wholeheartedly. Policy makers are missing a fundamental chance to build on the current profile of dementia if they do not welcome, engage, and put at the forefront of policy and campaigning all the people who have truly graduated in dementia. We are the UK’s greatest asset as we give dementia the greatest challenge it has ever faced.

Until next time...

You can follow me on Twitter: @bethyb1886

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Can the UK rise to the challenge?

Whether you are living with dementia, caring for someone with it, have encountered dementia at some point in your life through friends or family, work within the health and social care sectors, or are someone whose life has never been touched by this cruel disease, I am sure we can all agree that living in dementia friendly communities would be beneficial for everyone.

That we don’t already is down to, amongst other things, stigma, intolerance, an inability to make allowances for anyone who falls outside of the considered 'norm', and ultimately that since dementia is believed to be a disease of the old (which it isn’t exclusively, far from it), and the older generation are not valued anywhere near enough, it is somehow considered unimportant, even an irrelevance to many. In short, something that should be hidden way until people die with it.

Now society needs to make the same leap it has in accepting other minority groups and adapt itself for those living with dementia, thus enabling them to remain valued within their communities throughout their journey with this disease. In fact with cases of dementia predicted to rise to 115 million worldwide by 2050, far from being a minority disease, dementia will be something that is affecting huge swathes of people both directly and indirectly, including those who, for now, are completely untouched by it.

Massive strides have been made to help disabled people, children, and those of different ethnic backgrounds and sexual orientations to get a fairer deal, and in the medical sphere many other diseases are now widely recognised, talked about, and those living with them are assisted to lead lives that are active and full, so it is not impossible, but it is a big task.

You realise just how far the country as a whole must go when you encounter discrimination against those living with dementia from within the very sector caring for them. On my travels as a singer in care homes last year I visited one particular nursing home; it was very large, bright, airy and outwardly extremely welcoming. I discussed my background in dementia care and they wondered if I would be prepared to come and sing for the residents of their dementia unit. They admitted that, although they knew that those residents living with dementia loved music more than any other activity, they always booked the entertainers to come and sing for the 'normal' residents on the non-dementia unit. They thought that maybe it was about time they changed that, but if I was going to come and sing for their dementia residents they would like to pay me less! My reaction isn’t printable.

In balancing the argument I would admit to having had other, far more positive experiences which I will talk about at a later date, but it is pretty damning that if the whole of our care home sector isn’t even producing dementia friendly communities from within their own walls, we have got a job on our hands to convince the population as a whole to value, appreciate, support and help people living with dementia, and all those whose lives are touched by this disease.

I actually think that, despite the odds, it is possible to make the UK a place where people who are living with dementia can lead the lives they deserve to, rather than the ones foisted upon them by prejudice and ignorance. For such a quest to be successful, however, the people at the heart of it need to be those who know what everyday life with this disease is really like.

In another blog I will write about my vision for dementia friendly communities, and what I think would improve the lives of all those for whom dementia is a reality now, or will be in the future.

Until next time...

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