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