Monday, 20 January 2014

On the move

For everyone who is fortunate enough to be able to move around independently, I would estimate that most take that for granted. Likewise, I would suggest that one of the key ideas people have about ageing is that immobility is likely to come hand in hand with getting older.

Along with wearing dentures, losing your driving licence, becoming incontinent and living with dementia, immobility is right up there in most people’s vision of what ‘being old’ is like. It’s a hugely stigmatised view of course, since many people live a very long life without encountering any of these problems. Indeed I once knew a lady in her 90’s who was still driving her little Mini around, was perfectly able to get to the toilet when she required it, still had all her own teeth, and most definitely didn’t have dementia.

Nevertheless, the image of the older person with their walking stick or zimmer frame looms large in most people’s vision of ageing and indeed of living with dementia. It is worth pointing out, however, that I’ve known many people who never really had mobility problems during their years with dementia, and only became confided to bed when they became ill with an infection that they died from shortly afterwards.

Supporting mobility is a key aspect of helping a person to live well with dementia. The exercise is good for their general health, the independence is good for their mind, and mobility ensures a sense of normality is retained when many other aspects of their life may be changing. That’s not to say that being mobile doesn’t present risks, particularly around the desire to walk a lot (as I wrote about here) and the potential for falls and accidents that can result in broken bones, cuts and bruises. All of these can take a longer to heal for an older person, and if a hip is seriously broken it can be a threat to someone’s life.

These risk factors often lead to worries about a person’s safety and security if their mobility is actively encouraged, but we shouldn’t become too risk adverse. Mobility is vital part of a person’s life that as families and professionals we should make sure we support. Keeping people seated or in bed simply to protect them from the potential for injury is likely to do a huge amount of harm to their physical and mental wellbeing, and even more so if restraints are used.

Seeing immobility as some kind of cosy cotton wool world is totally inaccurate. If someone becomes immobile it produces a whole range of added problems, most notably around pressure sores and increased risk of infections. My father had far more chest infections when he became immobile, and his GP was firmly of the belief that his lack of movement was contributing to his inability to effectively remove the secretions from his airways. Imagine being unwell with chest, bladder or stomach problems and unable to move – a fairly unpleasant thought for anyone to contemplate.

Maintaining an individual’s mobility when they are living with dementia does, however, produce challenges. If a person becomes unsteady on their feet and requires a walking aid, trying to support them to learn how to use that correctly can be very difficult. Keeping people mobile if they are beginning to struggle with independent mobility also requires a huge amount of commitment from professionals and/or family members.

In care settings, including hospitals, you need high staffing levels to ensure that there is enough support to help people to move around. Movement often takes time and patience and cannot be rushed. In almost every care setting there are never enough physiotherapists, occupational therapists and indeed supporting care staff who are ready, willing and able to help someone to walk down the corridor, go to the loo or indeed venture further.

Even if an individual does eventually become immobile, that doesn’t mean that they should be dumped in a room and left there all day, or excluded from events or activities simply because no one has time to give them the opportunity to move. One of the big problems in my dad’s care home was always the lack of wheelchairs; you would often have to beg and borrow in order to find a wheelchair for him to be moved from his room. It would be utterly unacceptable for someone to not have clean clothes or food in a care home, but apparently it’s perfectly acceptable to restrict their chance to move around just because they are unable to walk anymore.

Immobility has huge implications for a person’s quality of life. It can affect the opportunities they have for engagement, fun, new experiences and environments, and the pursuit of hobbies and interests. It is also likely to affect emotions, often producing frustration, anger or boredom. Indeed, whenever you feel someone who is immobile is producing ‘challenging behaviour’ ask yourself how you might feel in their circumstances. Some people can even lose the will to live through immobility.

For many years the Paralympic movement has shown us what people can do when they are restricted by mobility or movement (see my blog on the positive approach of Paralympians), yet we often see older people, people living in care homes and particularly people with dementia, assume immobility is a natural part of their life and simply give up on helping them to maintain their mobility. I’m not suggesting our older generations are likely to want to become Olympians (well you never know!), but they should be given every opportunity to keep moving, however much they can and for as long as they can. After all, wouldn’t you want the same chance afforded to you?

Until next time...
Beth x






You can follow me on Twitter: @bethyb1886

Monday, 6 January 2014

A rallying call!

For the start of 2013 I wrote 'My dementia wish list’. Arguably I could just re-blog that for the start of 2014, since everything I described in that post is just as relevant now as it was 12 months ago.

Does that mean 2013 was a failure in terms of achieving those aims? Some may argue yes, but I’m not naïve enough to believe that those 10 objectives can be met in just one year. In my mind they remain a benchmark against which we should all be judged, and I include myself in that.

So many people talk about the end of the Christmas holidays conveniently forgetting that for many people the last two weeks haven’t been a holiday. For family carers and many front-line health and social care staff, Christmas Day, New Year’s Day and the other 363 days of the year are interchangeable; the relentlessness of what these individuals do, combined with their dedication and selflessness is what keeps our most vulnerable people safe, well and happy. If we recognise nothing else in 2014 it should be that.

Sadly with existing budget cuts, and more in the pipeline for 2014, services are closing or being restructured in a way that often appears to bear little resemblance to what might benefit family carers and frontline staff. Granted I’m biased after my experiences with my father, but I do genuinely believe that there are some things a civilised society should hold sacred, and looking after its most vulnerable people, and those who are charged with caring for them, to the best of that society’s ability should be sacrosanct.

Of course if evolution makes it possible to do things better and spend less money in the process that is a win-win for all, but the shear logistical requirements of health and social care will always have a high price tag, and to only see that rather than the requirements of the people accessing desperately needed support is the mind-set of someone who has never needed help for themselves or a loved one.

That mind-set is also completely at odds with the experiences many readers of this blog have had. A glance at the top 5 most-read posts on D4Dementia offers a very interesting insight into the priorities my readers have:

5) End-of-life care: A very personal story

4) Hydrated and happy (Dehydration)

3) So how much do you know about dementia? (Awareness)

2) The voices of experience (Experts by experience)

1) Hard to swallow (Swallowing problems/dysphagia)

The social media activity around my blog has shown, time and time again, that the posts involving practical advice on how to cope with common experiences of caring for a person with dementia (as delivered by ‘Hard to swallow’ and ‘Hydrated and happy’) are as widely read by professionals as they are family carers - indeed perhaps even MORE widely read by professionals.

Likewise the need to understand what good end-of-life care looks like will affect us all at some point, and as much as it is a difficult and potentially even a taboo topic, people from all walks of life are driven to seek out that advice. Then, of course, there are posts 2 and 3 on my list that exist to remind everyone about the value of the lived experience, and the need for basic awareness delivered in a meaningful way from said experts by experience.

The popularity of these five posts alone, alongside a look at the search terms statistics that tell me what individuals are searching for when they find D4Dementia, proves just how much this information is needed and how interchangeable it is (IE: not confided solely to those who are caring for a person with dementia). It doesn’t take much more of a leap of faith to link that need for information with the real-world need for care and support.

Fast forward another 12 months and I suspect that at the start of 2015 this may have become an even more desperate situation for many people. What of course will be looming on the horizon by then will be the UK General Election, expected in May 2015. In order to ensure that the needs of the UK's most vulnerable people, and those who care for them be they family members or professionals, are not forgotten, 2014 will be a pivotal year to continue to highlight the difficulties that they are facing and push for the care, help and support that they need.

If I could give you a rallying call for 2014 it would probably read ‘Let’s be united and determined’. In my mind there is no greater challenge for the year ahead than to ensure that health and social care is given the priority anyone who has needed it, or worked in it, knows it deserves.

Until next time...
Beth x






You can follow me on Twitter: @bethyb1886

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.
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...

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: http://dementiachallenge.dh.gov.uk/

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