Your voice

Sometimes I meet people who seem genuinely perplexed by my passion for the work that I do. Trying to convey the warmth and genuine love I have for my vocation isn’t always easy, particularly amongst those with very negative viewpoints of older people and people living with dementia. In my mind, however, if I can plant just one small seed of positivity into their mind then our conversation will have been worthwhile.

As those who have followed my work will know, I began D4Dementia for two main reasons: To help others and to ensure that the legacy of my dad’s life makes a real and lasting difference to society. What I never imagined was that just 18 months later I would receive a very prestigious award.

Being named ‘Best Independent Voice on Older People’s Issues’ at this year’s Older People in the Media Awards is undoubtedly the highlight of these last 18 months. My only sadness is that my dad isn’t here with me to share in this award, and be part of the photos and the memories, but I hope that he is very proud of the legacy his life is creating.



Winning 'Best Independent Voice on Older People's Issues'

I have been truly blessed to receive so many congratulatory messages, every one of which I am very grateful for, and as you can imagine my family, and in particular my mum, are incredibly proud. This award is about more than just my personal celebrations, however. It is a huge honour to have received it, but it is an even greater responsibility.

Our ageing population is growing on an unprecedented scale. The prevalence of dementia is also increasing, as are the numbers of people living with other long-term health conditions that require health and social care support. Against this backdrop there are also many other factors that are affecting older people’s quality of life. Do we have enough suitable housing? Can our elders manage to keep warm and eat healthily with the incomes that they have? And with more older people living alone, how do we support them with social interaction, combat isolation and loneliness, and ensure that they can live a meaningful life?

Huge questions that sadly I don’t have all the answers to. My role, however, is to continue to ask these questions, support campaigns that try to address key shortcomings in society (including the newly launched ‘Silver Line’ that offers older people a free, 24 hour, confidential helpline), and provide a voice to articulate the issues that concern older people. I have never, and will never understand why as a society we struggle so much to support and care for our citizens as they get older, but a particular tweet recently bought an element of thinking around this issue into sharp focus.

Put simply, the person sending the tweet said that as a society we lose interest in any group of people who do not contribute monetarily to our country. Although this goes vehemently against my viewpoint, I have to admit that I fear this person is painfully accurate in their observations. It has long bothered me that in a world obsessed by celebrity, image, technology and money, many older people are deemed irrelevant, surplice to requirements and a burden on society.

I’ve written previously about how we don’t see older people in a positive light because they aren’t young and sexy. Many older people simply couldn’t care less about the superficial nature of celebrity and image, and frankly I would argue that they have a very good point! Some older people have embraced technology (my mother had a smartphone before I did), but many others prefer more conventional methods of communication and avoid social media and having a house full of wires and ‘devices’. Should they be ostracised from society because of this? No of course not.

Meanwhile, for many people retirement means a fixed income that over time can leave them struggling to cope against the rising cost of living. I would point out, however, that people on a pension are still taxed once their income goes over a relatively meagre threshold, and of course many people end up having to use their life savings, and even sell their home, to pay for care.

Despite all of the negative perceptions of older people they are still consumers, contributing hugely to the economy in the retail, tourism and leisure sectors to name just a few. They were the people who pioneered the early inventions that have led to the technology we have today, and indeed defended the freedoms we now take for granted. Whatever Mr Google can tell you, he will never be as engaging as listening to an older person imparting their unique brand of knowledge and wisdom, complete with the wrinkles and grey hairs that are the trademark of a life lived to the max. And perhaps most engagingly of all, our elders offer us a once-in-a-lifetime opportunity to connect to generations who have now passed away, a connection that we often take for granted until it is too late to make it.

I’m proud of our older people. Their stoicism and resilience. Their dignity and wisdom. Even in the darkest days of my dad’s dementia, he had the fundamental qualities of being a good and decent person that many people much younger than him could learn from. Our elders have an elegance that a lot of my contemporaries cannot match, and they have a charisma that draws you into their stories and memories that I only hope I can match when I’m in my 70’s, 80’s and 90’s.

Being positive about ageing is about more than just pointing out what makes our older people so wonderful, however. It’s about realising that, health and luck permitting, we will all be older one day. Technically, as every day goes past we take another small step towards being an older person. Personally I want to approach those days with positivity, enjoying the wisdom I’m accumulating and the stories I will have to tell, and in a society that I know will value me.

Receiving my award gave me a particularly special story to tell, and I hope that as YOUR ‘Best Independent Voice on Older People’s Issues’ I will make many more.

Thank you for all your support.

Until next time...

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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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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