Wednesday 18 December 2013

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.
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...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 11 December 2013

G8 Dementia Summit – Our time is now

Me and my dad in 1980... 
Me and my dad in 1980...
...and 2011
...and 2011
The first ever G8 Summit on Dementia will take place in London today. A historic moment that finally demonstrates an acknowledgement from the world that dementia is THE global health and care priority that governments worldwide are grappling with.

Looking beyond the big vehicles of government and global politics that will dominate the headlines today though, and actually what I see is people. Most individuals in that room will be there because their job demands it, but when they leave their offices, get out of their ministerial cars and close their own front doors, they are first and foremost people.

I hope today’s Summit has a real humanity about it, because like every global focus on something that afflicts the body, it is about raw humanity. It’s about life and death, degeneration and pain, and the hope that we can do something better for people who are experiencing that now and in the future.

Whilst recording my personal experiences of dementia for one of the films that will be shown at the Summit today (you can watch my film here), I broke down in tears. Whilst I may cry in private in those moments that still sting me following my father’s passing after 19 years with vascular dementia, I have never cried in public whilst on a ‘work’ assignment. Professionalism demands that my message has controlled emotion, not the sort of breakdowns associated with those who are grieving – tears suggest you want sympathy, when actually I want action.

Yet in that studio the moment got to me in a way that no other moment quite had in a public arena. The cameras stopped, and looking back now, I wonder how many people who have lost a loved one to dementia had wished in those dark and difficult moments that the world could stop, just like those cameras did. Many of the people watching my recording were also moist around their eyes, on my journey home those emotions were still simmering under the surface, and even now as I watch the film I feel tearful.

Despite all of my public speaking engagements, nothing really prepared me for what sitting in front of those cameras, talking about my personal experiences of my dad’s dementia, would really be like. I hope that despite all of their years as hardened politicians, civil servants and business moguls that nothing really prepares the delegates at today’s Summit either.

If I could ask one thing it would be that everyone in Lancaster House today arrives with a clear mind and a willingness to embrace the message of humanity that I anticipate will be set early on by hearing the personal accounts of people who have dementia, and those who have cared for a loved one with dementia. My message, although sad, has hope in it too, and my wish more than anything is for that hope to shine through.

We need a fresh look at how we approach dementia. How we care for people living with it, how we support them and their families, and how we give everyone who is touched by dementia some of my hope. In short ,a strategy that goes beyond partisan boundaries and political colours and puts people with dementia and their families at its heart: an outcome that is about people and humanity.

In my mind it is also about delivering something that de-stigmatises and empowers people living with dementia and their families. I fear a rush of headlines that depict dementia in the same way that you would wars and disasters. I can tell you now, as someone whose father lived with dementia for 19 years, I largely avoided any dementia related media coverage in that time. That which I couldn’t avoid often demonised people living with dementia, yet my father was a loving, intelligent, family man, not some raging brute who needed to be caged and forgotten about.

Gravitas in the argument around dementia doesn’t come from using ever more extreme language in describing it. Nor does it make improvements in care and support, treatments, prevention and cure any more likely – if it did then they would be here by now. It comes from humanity. From seeing people with dementia as people. The politician who takes his children to visit their gran in her care home. The businessman whose mum has just had a fall at home and is feeling really confused. Me and my dad.

I don’t want to call the G8 Dementia Summit a once in a lifetime opportunity, because I believe the chance to make a difference exists every day, whether you are a scientist, a politician, a journalist, a medic or a care worker. Whatever profession we choose we are still people, subject to human frailty, and foolish if we are not mindful that if dementia doesn’t affect our grandparents or our parents, it might just affect us or our children.

Our time to make a difference is now.

Until next time...

Beth x

Watch the live stream of the summit here:

You can follow me on Twitter: @bethyb1886

Wednesday 4 December 2013

G8 Dementia Summit - My dad’s message

My dad
My dad
I often wonder what life would be like if my dad was still alive. If he had never developed dementia I imagine him still growing a few veggies, reading his books, sitting in his chair enjoying box sets of the old TV programmes he loved so much, watching the Arsenal (he would be happy with the way the season is going so far), listening to favourite music with my mum and them both singing at the tops of their voices, and regularly tucking into the meals he most enjoyed (traditional meat and two veg being the number one - he didn't share my passion for pasta and curry).

Dad would be 86 now, and I think he would still have been pushing himself as hard as he could. My dad was never a man to give up or give in, including in the years that he lived with dementia. He always said that there was no such word as can’t. “Can’t means won’t, and won’t has to be made to,” he would say. An interesting idea to throw into the mix with the G8 Dementia Summit in mind.

Dementia robbed me of my dad. I can only guess what he would be doing now, I will never know for certain. He lies in a wooden box six feet under the ground; all I have left are my memories and the chance to imagine what life might have been like if we were still together. Of course we all have to die of something at some point, but a 19-year struggle with vascular dementia, a slow and often painful decline resulting in complete dependency finally ended by aspirating on your own vomit five times (resulting in a catastrophic pneumonia that engulfs your body over a four week period) isn’t, I would venture to suggest, the way in which most people would like to go when their time comes.

For my dad read many more mums and dads, grandmas and granddads, aunties and uncles, cousins, brothers and sisters and, because dementia can affect younger people too, sons and daughters. People from all walks of life, all ethnicities, religions and sexualities – no family is immune from watching a loved one developing, living and eventually dying with dementia.

Is it worse than watching a loved one living with any other disease or condition? I can’t honestly answer that since I’ve never cared for someone with any other terminal disease, but I can tell you that it takes a hell of a lot out of you. Even though you find strengths to compensate, they don't make up for the deficiencies that can feel overwhelming, or help you to deal with the emotional rollercoaster that you find yourself on, most starkly illustrated by the sense of loss that pretty much every person I’ve known who has been personally affected by dementia will talk about.

In the future many more families will be experiencing those same feelings that we did. Alongside the emotional toll will come the financial toll, which I imagine will be talked about extensively by the G8 on 11 December. In truth, I suspect much of the impetus for this Summit and the popularity it has found with other nations is, ultimately, down to money. Dementia costs governments a fortune – more than cancer, heart disease and stroke combined in the UK alone - and it will only cost them more in the future if the predicted rises in the numbers of people living with dementia are correct. If they can find a way to treat the many different types of dementia better, or indeed cure or prevent even just the most common ones, it would have a huge financial benefit.

Any family would welcome better treatments, and even more so a way to prevent or cure their loved one’s dementia, but looking back over those 19 years with my dad what we really wanted more than anything in the world was to understand how to care for him to give him the best quality of life possible. We had little choice but to accept that he had dementia, and in a constantly changing landscape we didn’t have time to cling to hopes that he could be cured. We just wanted him to feel happy and well cared for.

As it happened, through luck or judgement, I’d say we actually made a pretty good job of that in the end, but I think of every family who are currently poking around in that dark wilderness of feeling totally baffled and bewildered and my heart sinks. Surely in 2013 we can offer people with dementia and their families a personalised plan of care that puts them, rather than dementia, in control once more.

Looking back at what I imagine my dad would be doing now if he was still alive and hadn’t developed dementia, I realise that even WITH dementia he could, and should, have been able to continue to do all of the things that he loved, even if they needed to be modified for him. A loss of memory is not a loss of life, and yet lack of awareness, understanding and knowledge puts up so many barriers to that golden aim of ‘living well with dementia’. All of those can, in some way, be addressed by the G8 Dementia Summit.

To the Health and Science Ministers, advisors, bureaucrats and business leaders at Lancaster House who will be searching for common ground and a positive way forward for people with dementia -  potentially hitting a few stumbling blocks along the way - I think my dad’s message to you would be this: “Can’t means won’t, and won’t has to be made to.”

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 27 November 2013

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'
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...
Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 20 November 2013

Caring for carers

For many years I’ve thought of carers as the forgotten millions. As a family we certainly felt forgotten on many occasions during my dad’s 19 years with dementia, both before and during his years in care homes and his spells in hospital, and given what I hear at conferences, events, through my writing, social media and email, little has changed.

There is just one subtle difference though – I feel the voice of carers is becoming louder, more persistent and more difficult to ignore. Slowly but surely there is a movement growing in momentum, spirit and immovability that will, I hope, one day ensure that the needs, rights, knowledge and skill of unpaid carers is recognised and enshrined in the fabric of society.

If anything it amazes me that health and social care have for so long undervalued the role of people who care for a loved one, be they a family member, friend or neighbour, near or far, living with complex needs and long-term conditions or someone older and/or immobile who requires crucial daily living support. There is no archetypal carer – they may be young or older or anywhere in between. They will undoubtedly have a life of their own that they will often indefinitely put on hold. I guarantee the majority will be driven by love and devotion, but exhaustion and frustration will also play a big part in their life. What unites them all, however, is the need for far greater support and recognition.

Support is vital because you simply cannot be a 24/7 carer for what may be an unspecified amount of time before the cracks begin to appear in your own health and wellbeing, your caring suffers and therefore so does the person who you are caring for. When the carer breaks down and then needs care themselves, there is often no one to care for them and indeed no one to step into their caring shoes, meaning effectively two people become highly dependent on society.

Recognition goes hand-in-hand with support, because if a carer is recognised as a carer there is more chance that their needs will be met, hopefully avoiding that crisis situation. Recognition goes further than this though. It is about seeing a carer and the person that they are caring for as a joint entity, rather than seeing the vulnerability of the person needing care and totally ignoring how that vulnerability also makes the carer very vulnerable. Recognition is also about valuing carers – their knowledge of the person that they are caring for is vital for any professional providing healthcare or social care for that person. That knowledge must be fully integrated into the provision of professional care.

How we make this happen in relation to healthcare is part of the new NHS ‘Commitment for Carers’ – an initiative that recognises that the health service can and must do much better when it comes to responding and reacting to carers, their needs and their knowledge. It must be hoped that this ‘Commitment’ will forge a workable, long-term plan that will benefit carers, those that they are caring for, and the professionals who should be partners in that care provision.

Very close to my heart, of course, is how we support those who are caring for a loved one with dementia. Very early on in the focus on dementia, the Dementia Action Alliance (DAA) was born (I am a national member), and from that we now have the DAA Carers Call to Action (CC2A). The aim of the CC2A is to, “Ask the right questions, explore examples of good practice and find solutions to address the needs and rights for family carers of people with dementia.”

The fact that any of these initiatives exist at all is, ultimately, down to carers themselves. Despite being people with exceptionally busy, stressful and hugely demanding lives they have found time to speak to media organisations, effectively used social media to highlight their experiences and, perhaps most powerfully of all, have spoken out at many key events, often supported by fantastic teams from carers’ charities.

In the case of carers of people with dementia, this has often been through Dementia UK’s ‘Uniting Carers’ – a group that I am very proud to be a member of and very sad to see disbanding. Fellow members, alongside people with dementia, blew me away at last year’s Dementia Congress, and this year I was literally moved to tears hearing their often heart-breaking accounts.

Sheila Wainwright’s story in particular was something that a packed Congress hall of people with dementia, carers, health and social care professionals, business people and media representatives, alongside Care and Support Minister Norman Lamb MP, really needed to hear. Recounting her husband’s dementia, and the impact it had on both of their lives, Sheila told of the "Shear daily misery" of their life, how "No one" answered her questions, and that over the years "Many people came and went, and came and went" but there was simply no continuity of support for her or her husband.

Sheila admitted that she was, "'Planning how to end our lives before a call to Admiral Nursing Direct saved my life." Her husband eventually passed away in hospital after an agonising end to his life, with Sheila movingly recalling the actions of a nurse as her husband was finally at rest, "That sprig of flowers put on his chest when he died was one kindness I will never forget."

It can never be acceptable that we wait until someone’s death before we show kindness to their carer who has valiantly stood by their side as, in Sheila’s words, her husband, "Screaming and snarled, pooed in the shower and pushed it down the drain, lost the ability to walk and talk, and went from 13 stone to just 7 stone when he passed away."

Sheila said she felt bereft and bewildered. I had tears in my eyes from the pain in her voice and her story, and I know for certain that I’m not the only person at this year’s Dementia Congress who was similarly emotional. Although Sheila’s husband is at peace, the psychological ramifications of caring for him and all of the struggles that she faced live on two and a half years later. It is for Sheila, and everyone who walks in her shoes, that we MUST ensure that we care for carers.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 13 November 2013

100 not out

Back when I began D4Dementia I have to admit I never thought I would make it to 100 blog posts. Indeed I was unsure I would make it to 10, and even more unsure if anyone would actually want to read them!

How wrong I was. My humble little blog has become beloved by thousands, and I am eternally grateful for the support of each and every one of you, whether you are a one-off reader, an occasionally viewer or a regular to these pages.

Despite the fact that many months have passed since my first post, and so many exciting things have happened for me in that time, the values, passion and dedication that persuaded me to start D4Dementia remain as strong as ever.

Back on 20th May 2012 I told you that following my dad’s passing just a month earlier after 19 years with dementia, I was on a quest to, “Provide support and advice to those faced with similar situations, inform and educate the wider population, promote debate, and campaign for improvements in dementia care and changes to the care system in general.”

My appraisal of this, on my 100th D4Dementia blog post, is that this quest is coming along nicely. I’ve learnt that I will never succeed 100 percent with any of these aspirations no matter how successful and sought after my work becomes, simply because life is about learning and sharing and reaching every single person, family, professional and organisation will always be tantalisingly beyond reach. But that is exactly how it must be, since to fully succeed would be to stop trying, and I don’t ever plan on doing that.

I’m not sure if my passion in itself is unique, or simply just uniquely driven, but I know it is heartfelt and sincere, and no matter how many years separate me from the day of my dad’s passing, he will always be the focal point for everything I do. He gave me so much to be proud of in him as a father, a man, a role model and a person living with dementia – nothing can or ever will erase those memories.

As D4Dementia has grown in popularity, so more doors have opened for me, and I’m very excited about what 2014 holds for my work. There have been a few references to my ‘celebrity’ and ‘fame’ recently – all highly embarrassing. I’m just a normal girl, from a very humble background, sharing my experiences and trying to make a difference. That is not to underestimate my determination, but not to overstate my view of myself either. Hard work, humility and respect were my dad’s watchwords and they will always be mine.

So I guess the only way to conclude this post is to raise a glass to another 100 D4Dementia blog posts – right now I’m unsure they will ever happen, but then I’ve been wrong before!

Keep reading, enjoying, learning, sharing links and recommending D4Dementia, and I promise I will endeavour to keep on making all of those activities worthwhile. With your support everything is possible.

Thank you.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 6 November 2013

Does the world really stop?

There is a prevailing view that when someone is told that they have dementia, everything in their life must stop. If they were working or studying that must stop. They must stop driving. They stop being spoken to and start being spoken about. They stop being given tasks to do, or even being allowed to complete simple tasks that they feel comfortable tackling.

Any deviation from this is considered to be a lack of compliance, but since when did people with dementia have to become compliant? Being told you have a terminal illness is likely to make most people want to become as incompliant as possible. A diagnosis of many other terminal illnesses is often associated with the formation of a bucket list, a compendium of all the things someone wants to achieve, all the places they want to visit and all the people they want to meet. Not with dementia though.

We expect people with dementia to just crawl home and stay there until potentially a medical emergency brings them into contact with their local hospital. Then they will encounter the giant beast that is healthcare, followed by social care, followed by huge confusion and frustration for a person who is likely to already be hugely confused and frustrated due to their dementia.

So is this mismanagement on a grand scale or just a fact of life? Personally I don’t think this reality is right for anyone. No one is likely to live well with dementia if their life is reduced to a model of isolated dependence, where joy and happiness is in short supply and irritation and depression are the daily norm.

I’ve written previously about the need for everyone with dementia to be given the opportunity to achieve, and that can be achievement at every stage of dementia. You may associate achievement with hitting huge milestones and pushing yourself to extremes – for someone with dementia it may be something as simple as making a cup of tea or buttering some bread, but it’s achievement, it is an element of self-sustainability and it’s priceless.

I lost count of the young doctors who saw my dad during his 19 years with dementia and questioned the point of treating a man who a) had a terminal disease, b) was immobile (as dad was for many years), c) doubly incontinent, d) had a swallowing problem (for the last four years of his life) and e) apparently in their narrow-minded judgement, had no quality of life whatsoever.

He did, in fact, have quality of life, just not what most people with limited understanding of dementia perceive to be quality of life. He enjoyed his food and had an amazing appetite. He loved listening to music and would sing along. He rested peacefully and relaxed with simple pleasures. He looked forward to going outside and would snooze in the sun under his panama hat. He was emotionally alert and showed that when he saw the people he cared about. He was loved and showed love to those he cared for. All of these things represent quality of life.

My dad had that, however, in spite of the systems that try to wrench this away from people with dementia. Systems that want to dehumanise and disempower people with dementia, pretty much from the earliest point in their dementia to their last breaths at the end of their life. My dad had quality of life because he had a family. How many people don’t have an actively involved family or indeed any family at all? Relatives have been known to run for the hills when they hear that a member of their family had developed dementia (some fearing that it is, in fact, contagious).

My dad’s world could easily have stopped. I’m sure on some days it did, no one in our family would claim to be a superman or woman – none of us were capable of removing every negative feeling and experience from the life of my dad, however much we tried. That is, however, the point: we did at least try.

For us the world didn’t stop, it kept on turning. Yes it was different, but life doesn’t stand still. It can happen around a person with dementia, or we can all make a conscious decision to ensure that person is part of their world. Indeed, to give someone the best chance of living well with dementia nothing needs to ever really stop. Yes they may not be able to carry on with a particular type of work or hobby, but there is no reason not to try something else that they enjoy, or indeed something new.

If paid employment is out of the question, volunteer, campaign and spread the word. Talk about your experiences; I guarantee that there will be people who want to hear about them – I definitely do. Driving a car may not be possible, but look into every other form of transport and make sure that you are getting out and about regularly. Tasks may need some supervision occasionally, but as observers we should never jump in to ‘correct’ unless it is absolutely necessary to prevent harm. It’s ok to do things ‘wrong’ – it’s better to have tried, experimented and come up with something unique, than to have sat back and decided that you can never do anything ever again and it’s time to just give up and admit dementia has won.

Throughout history the most innovative people have often been incompliant – the mainstream wasn’t for them, and they set about putting their own mark on the world. In many ways, I’m hugely incompliant and actually proud of it. Facing up to a future with dementia may be terrifying, but let it also be liberating. Make your bucket list and don’t let your world stop – it’s far harder to start again than it is to just keep going.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 30 October 2013

Lessons from my virtual world

Earlier this month I experienced the Virtual Dementia Tour for the first time. Along with 24 people who work in social care, we went through the tour in pairs, with most of us then observing others on the tour. The results weren’t exactly surprising to me – we all experienced ‘dementia’ differently, and were united in feeling very unnerved by the realism of the tour.

Ours was just a snapshot of this product, and yet for many people it was a very long 10 minutes. I for one hugely disliked the constant noises I had to listen to and the way in which my senses became distorted. Reflecting afterwards, however, has produced perhaps even greater insight than those 10 minutes of ‘living with dementia’.

My naturally practical side immediately kicked in once I began the tour; I was determined to illuminate my new reality and then find a task to do. I couldn't hear the instructions at the start of the tour due to the noises being played into my ears, so I decided to set about accomplishing the only task I felt fit to perform, regardless of whether that was the task I was actually charged with completing.

Thus I began to fold clothing and linens, putting them into relatively neat piles, a task I regularly do at home so it came naturally to me. In the feedback I had about my tour, I am reported to have stomped around (I’ve been accused of doing that thundering up and down the stairs at home), made small noises (not uncommon for me, I’m the master of a whole range of small noises to voice everything from irritation to happiness), sniffed a lot (I’d only just got over a heavy cold), jumped at the loud noises (very common for me) and been territorial over the folding (again not surprising, I’m a bit of a perfectionist).

So, despite experiencing some very unpleasant sensory disturbance, I drew upon many of my natural personality traits and gravitated towards familiar tasks in order to cope, and apparently once I became immersed in the folding I was significantly calmer. So what do we learn from this?

Lesson 1) People with dementia are still people, they are not a disease or a raft of symptoms – their personality, likes and dislikes remain with them.

Lesson 2) People with dementia can still achieve things, and they want to achieve things.

During the tour, I did something that the trainer said only one other person in the UK had done since they had been delivering the training over here. I won’t tell you what it was in case you are planning on taking the tour, but in conversation with the social care workers afterwards, the feeling seemed to be that I’d acted differently to most people precisely because I’m not a professionally trained social care worker.

Lesson 3) Does the way in which we educate our professionals really reflect lived experience? Personal experience of dementia is invaluable in helping to produce care and support that is actually caring and supportive for people with dementia.

The fact that so many of the people on the tour found it eye-opening was a great testimony to the effectiveness of the product, but it does make you wonder how many other social care professionals lack insight into dementia and yet deliver frontline care and support every day.

Interestingly for me the tour, rather than being an insightful experience, was actually a reassuring confirmation that everything I’d believed in for my dad’s care, and that I now champion through my work, is very much best practice. Examples of this would be:

Lesson 4) Constant background noise, especially from TV’s and technology, is very unhelpful for making people with dementia feel calm and relaxed.

Lesson 5) Giving a stream of instructions to a person with dementia isn’t likely to produce a positive result, and you can apply that to constant direct questioning too.

Lesson 6) Anyone is capable of behaviour not normally associated with them when they are living with dementia, including swearing or aggression. Don’t take it personally.

Lesson 7) Dementia naturally produces a different reality. We should not try to correct that but instead embrace it.

Lesson 8) People with dementia shouldn’t be restricted any more than is absolutely necessary for their safety and wellbeing. We must avoid being risk adverse, and care should never be controlling or about imposing our will on the person with dementia.

Lesson 9) Dementia is a serious, multi-faceted cognitive disease that could leave anyone aimlessly searching in a permanently unfamiliar place – we must offer kindness, compassion and support to make that search more bearable. 

Lesson 10) Communal living can be very problematic for people with dementia, and where it is necessary, specialist care is vital.

Lesson 11) We are all different and must be treated as the individuals that we are.

My only real criticism of the tour is that it gives everyone the same experience, the only differentiation is in how individuals behave when subjected to that. So, whilst it undoubtedly gives a great insight into an example of dementia, those taking it must be mindful of the huge variations in the different forms of dementia, and how different symptoms can be magnified or reduced for each individual.

Lesson 12) Many of the sensory issues you go through on the tour are related to what you can see and hear. It should be remembered that some people will live with dementia but have very good eyesight and hearing, whilst others may be completely blind and deaf (as I wrote about here).

Lesson 13) We were all fit and healthy individuals, but people who are living with dementia could have a variety of mobility and health problems that again will affect their individual experience. Consider how problems like immobility, incontinence or dysphagia would greatly affect how a person lives with dementia.

Interestingly, the trainer said that most people completing the pre-tour questionnaire answered yes when questioned about whether people with dementia got the care that they needed. I replied no to that question both before and after the tour. Why?

Lesson 14) Ultimately, however much we think we know about dementia, and however great we think the care is that we are providing, we can always do better.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 23 October 2013

15-minutes of shame

As a light was shone, yet again, on the huge inadequacies within our home care services as the issue of 15-minute visits hit the headlines, I decided to time my morning routine. Just how much could I as an able-bodied thirty-something, fairly fit and known to be someone who is constantly on the go, get done in 15-minutes?

Well, the answer was that I couldn’t get out of bed, make a cup of tea, cut, toast and butter my breakfast bread, use the loo, have a wash and get dressed within my 15-minutes. Something had to give for me to make my target, in fact quite a lot had to give in the end, as I like a shower rather than a quick rub over with a damp flannel, I needed to blow-dry my hair, and we’d run out of butter for the toast, so I had to pop to the shop.

It will come as no surprise to my family that it took me more than 15-minutes to get ready for the day ahead, but I hope it provides a sobering thought for anyone who believes that 15-minutes is long enough to fulfil the care needs of an older or disabled person.

This may be a person who will take most of the 15-minutes just to be helped to get out of bed. They potentially then have to choose between having a hot drink, something to eat, visiting the loo or having their incontinence pad changed or catheter checked, having the sort of wash that they would want (imagine never having the chance to enjoy a bath or shower because there is no time to help you with that), getting dressed and having their medication. Even something as simple as a hot-water bottle may not be filled in time to help keep you warm.

All that is before we even get onto the personal interaction (a chat in other words) that so many vulnerable and isolated older people crave, or the care worker addressing any unexpected problems of a personal or domestic nature (health problems, heating breakdowns or water leaks for example – things that cannot be ignored as they could put the person in danger). You cannot possibly even begin to tackle all of these needs within a 15-minute window – it is degrading to the person who needs care to even try, and insulting to the care worker to expect them to hit that type of target.

We need to understand that care isn’t a luxury. It’s not a Gucci handbag or a Ferrari parked on your driveway. It is the most basic, fundamental thing that we all need. Most of us take care for granted because we can care for ourselves without any assistance, and then we have children and naturally find ourselves caring for them without giving it a second thought.

Imagine trying to give a baby all of the care it needs in the morning within a 15-minute window. We have maternity and paternity leave not just so that parents can bond with their child and establish their family, but because that child will need a lot of care. Many adults need similar levels of care and support, in a different context of course, yet many councils believe that it is achievable within 15-minute timeframes.

Our social care system is broken at the point in which we place a stopwatch on care, and why is that stopwatch there? Time is considered to be a useful way in which to price work, and the price on care is being continually squeezed. Public money either isn’t available, or hasn’t been made available, to fund the increasing care needs of our ageing population who are living longer but with far more complex long-term conditions. Even most people who privately fund their care do not have a bottomless pit of money and are still subjected to 15-minute care visits.

I fear as a nation we simply do not understand what care involves. The complexities of it and the fact that it cannot be rushed. We don’t place enough value of the importance of human interaction and the joy and comfort that it can bring. We don’t see care as an investment a compassionate society should be making, but rather see it as an annoying drain on resources that must be cut back to the bone. We bypass basic human rights, we tolerate the fact that it is undignified and lacking in compassion, and ultimately ignore the reality that it’s dangerous to try and provide care within 15-minute windows. We effectively treat prisoners better.

Yes social care needs more money, and sadly I don’t hold the purse strings, but it also needs an overhaul. Councils, commissioners and care agencies need to look at themselves and be honest – are they really proud of the work that they do? Can they achieve what they expect the average care worker to achieve in 15-minutes, and have they ever put themselves into the shoes of the person needing care?

I challenge you – time yourself. How much can you get done in 15-minutes that involves your personal care, basic nutrition and hydration, and caters for your need to be kept warm? Then consider how mobility problems, reduction in your sight and/or hearing, or any other medical problem might affect your ability to fulfil those needs. Then factor in having someone to help you so that you can overcome the limitations your body places on you. Then check your watch. I guarantee that you will need far longer than 15-minutes to achieve this.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 16 October 2013

Caught on camera

CQC’s launch of their document ‘A fresh start for the regulation and inspection of adult social care’ has created a barrage of debate. Amongst the raft of changes and proposals to overhaul the inspection and regulation of care services for adults are some ideas that CQC want to discuss with the public, including the “Potential use of mystery shoppers and hidden cameras to monitor care”. Concerns have been raised about whether hidden cameras are ethical, if their use would be legal, and whether we even need them.

To begin to illustrate my views, I want to pose a scenario to you:

A man of 84 is living in a care home. He has advanced dementia, and requires all of his needs to be met by a skilled team of care professionals, assisted by his family. His family are not present 24 hours a day, so much of his care is provided by different care professionals. His family become concerned for his welfare when the ownership, management and staffing of the home changes . The home is frequently short-staffed and running on agency staff (who don’t even know who each resident is). The man becomes more frail, has more infections, begins to develop pressure sores and is being kept in bed more than normal. This is also true of other residents. The few remaining regular staff, including the man’s keyworker, express concerns about the way that they are being instructed to care for the man and how new staff are caring for him. The man is eventually admitted to hospital with pneumonia after aspirating on his own vomit five times. The hospital are so concerned about the condition of the man that they make him the subject of a safeguarding order. He never fully recovers from the pneumonia and passes away four weeks later, less than two weeks after his 85th birthday.

That man was my dad.

I repeatedly raised concerns about my father’s care with the care provider after the changes in ownership, management and staff. Eventually I had to resort to phoning CQC three times before they would take my complaint seriously. They inspected, but then took two months to produce a report. It was too late for my dad. His keyworker, a wonderful care professional who had diligently looked after my father for eight years, was as heartbroken by the way in which the care deteriorated as we were. Indeed that care professional, and his colleagues who had  assisted with looking after my dad for many years, found alternative employment and left the home: they simply could not stand to deliver care in the way that the management wanted it delivered.

On the night my father aspirated on his own vomit, we believe he was put to bed too early and given a milky drink in bed without being properly upright – all of those actions going directly against our wishes and the recommended advice for his care from doctors (the management made their own care plans without our consent). The doctors treating my father at the hospital didn’t believe he would pull through the night – aspirating on your own vomit is a bit like pouring acid into your lungs they said. Imagine how that felt.

We will never really know what happened that night, because despite asking the staff on duty, no one could explain. I dearly wish we had had a hidden camera in my father’s room that night, and indeed in the months leading up to that fatal incident. I know it would have proven the poor care my father was subjected to, and it would also have proven some of the good care people like his keyworker provided, often fighting against the management to do what was best for my dad.

Do I think cameras should be routinely installed into care homes? No I don’t. But potentially they do have a value in certain specific circumstances when there are grave concerns for a person’s welfare that only indisputable footage can prove. Currently surveillance is limited to the few families who have installed hidden cameras to prove that their relative is being abused, or places like Winterbourne View that needed Panorama cameras to expose the appalling treatment being meted out.

It must be remembered that some people don’t have a family to monitor their care. People with dementia, learning disabilities and other conditions cannot always articulate what is happening to them. Proving how injuries are sustained can sometimes be one person’s word against another’s. Poor care many only really come to light following a crisis point when a person is admitted to hospital in a condition that no amount of treatment can cure, or it many only become evident on investigation after death.

I want to pose another scenario to you:

A lady living with dementia in a care home, almost completely deaf and blind, begins to lose a dramatic amount of weight and is always thirsty when her family visit. The family suspect she isn’t being fed enough. They often find drinks that have been left out of her reach, and suspect that staff aren’t communicating with her appropriately. She eventually passes away at a weight that would be considered severely malnourished.

I knew this lady, and her family agonised over what happened to her – a camera would have given them answers, and potentially ensured she received better care.

Dignity, privacy and respect are all vital in any care setting, but there is nothing dignified or respectful about elder abuse or premature death from negligence that hides behind a veil of privacy. Such practices – that are in the minority - must be rooted out: they taint the vast majority of wonderful care that is being provided. A hidden camera can prove or disprove allegations and suspicions, and it could potentially work in many different ways. For example: It can prove that a care worker is acting inappropriately. It can prove when a provider is negligent in not giving their staff the equipment or training needed to perform a task or to keep a person safe. It can assist a care provider to root out poor practice that they suspect an individual employee of but need to prove. It can show if a person receiving care has had a harmless accident or is self-harming. It can provide evidence if a family are being abusive, either towards their own relative or towards staff (yes, it does happen).
Cameras could also be helpful in certain specific circumstances in people’s own homes, where they are receiving home care or care from a family member, friend or neighbour.
Consider this scenario:
Two elderly sisters live alone at home. A neighbour ‘befriends’ them. That neighbour manages to persuade them to sign a Power of Attorney and then gets control of all of their money. She tells them that they are now so poor they cannot afford heating. Professional carers often come in to find these ladies cold and hungry. One of the sisters develops hyperthermia. Eventually they end up in care, virtually penniless.
I knew these ladies – could a camera have helped them, and brought the person who prayed on them to justice?
Clearly there are huge ethical, moral and legal issues with the use of cameras in any setting, particularly if those cameras are hidden. Whether a policy allowing the use of hidden cameras in adult social care will ever be created and implemented isn’t yet decided – this is merely an idea that has been put into the public domain for debate. Personally I welcome healthy discussion on any proposal that could help to safeguard our most vulnerable people and stamp out elder abuse. I don’t believe sensitive use of such cameras in a minority of isolated cases would undermine the morale of social care professionals. In my mind, those who are providing good care have nothing to fear.
Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 9 October 2013

Why, oh why, oh why?

Incensed. Appalled. Outraged. Indeed there are a plethora of words to describe how I felt on hearing reports of a rise in suspected cases of elder abuse in England, but I’m not sure any of them accurately do my feelings justice.

What I cannot, have never been able to, and will never be able to comprehend is what motivates anyone to commit such abuse. Of course you could equally argue the case for the abuse of children, women, the disabled and indeed any person, or any animal, in a vulnerable position – it is never, ever justifiable, and the perpetrators should be held to account for their actions.

Why we have a rise in possible cases of elder abuse is, I fear, about more than just a growing older population or the opportunism some may see in that. I would suggest it has as much to do with the societal approach to ageing, mostly because I see and hear so much in everyday practice that constitutes the foundations of elder abuse. The demeaning of older people, the view that they are a drain on resources, complaints that they are a sector of society that doesn’t ‘contribute’ and that they are simply ‘in the way’.

One of the great arguments against legalising euthanasia is the concern that it would lead to many older people being pressured into ending their lives simply because they are at a stage of life when they need more from ‘the system’ than they are currently putting in. This of course conveniently ignores all the years they did ‘put in’, worked hard and contributed to the defence and prosperity of the nation, not to mention parenting and grand-parenting the younger generations we have now.

In our desire to measure so much in monetary terms, we lose sight of the priceless contribution that our older generations bring to their communities – their wisdom, their experiences, their link to our past, their guidance in the present, and their observations on our future. It may be really simple stuff, but it is incredibly important if we are ever to regain the community spirit that we’ve lost, and to teach our younger generations about humility and respect.

I was bought up within an environment that steadfastly instilled in me respect for my elders. Perhaps this was because my parents were older when they had me (my mum was 40), or because we had strong ties with older relatives throughout my childhood (including the great sadness of my grandmother passing away). Or maybe it’s a simple case of engendering a system of values – to speak when you are spoken to and for children to be seen and not heard (my dad’s favourite).

It probably sounds really old-fashioned, but it worked. Knowing your place as a child within your family means that as an adult you have a grounding that no amount of money can buy. I’m a staunch defender of our elders not because my dad lived with dementia for 19 years and became one of those very vulnerable older people, but because my mum and dad taught me about the value of generations and the place of each generation within the overall tapestry of life.

We will all be old one day if good health prevails upon us, and how do we hope to be treated? As a piece of dirt on a younger person’s shoe, or as a valued and respected member of the community? Moreover, for anyone with children, how do you want them to be treated when they get older? Would you be prepared to tolerate them being neglected or physically or mentally abused simple because they cannot fight back?

Ultimately the point about elder abuse is that it could happen to any of us. It isn’t something that only happens to other people. None of us know what care and support needs we may have as we grow older. We may hope to never rely on other people, either within our own family or professionals who are otherwise strangers, but we just don’t know.

Amongst the majority of wonderful care that my father received, he was subjected to treatment which in my mind was undoubtedly abusive, a view backed up by doctors when he was admitted to hospital with aspiration pneumonia (he had aspirated on his own vomit five times) and pressure sores. My dad became the subject of a safeguarding order, and that was despite having an actively involved family who tried to stop the dreadful treatment meted out to him. He never fully recovered and passed away four weeks later.

We know from the scandals at Mid Staffs and other hospital Trusts that abuse isn’t just confined to care homes, and the exposé TV documentaries on bad care only highlight certain individual organisations.  I don’t believe that the cases of abuse in people’s own homes that hit the headlines tell the whole story either. My greatest fear is the abuse we don’t hear about; the people who are in pain, soiled, sworn at, neglected or isolated. The people who are fearful of having enough money to pay their bills because someone has conned them. The people who are being told they are worthless and should just die.

Every single one of those people needs us. They need strong voices to highlight their plight, a person to talk to who will help them, effective whistleblowing procedures, a robust system of regulation from CQC to ensure that they are safe, well cared for and happy, and from everyone who lives in their community, respect. It costs nothing, but if it was engendered within all of us, elder abuse and indeed all forms of abuse would never exist.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886
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UK readers can get more information on Elder Abuse from Action on Elder Abuse: or call the Age UK helpline: 0800 169 6565