Listening and Talking

You might have read this before here, but bear with me. When Mum was diagnosed in February 2009, we didn’t know where to turn, what to do. “Come back in six months” rang in our ears from the consultant who had delivered the devastating verdict after we’d pushed and pushed for a referral. That’s 14 years ago and sadly, as I keep hearing, it’s still the case for many in 2023. There remains a gaping disconnect between diagnosis – if you can get that far – and immediate, practical support.

All those years ago, I turned to Alzheimer’s Society for the answers I couldn’t find elsewhere. The people I spoke to really listened to me and guided us through those painful early months. Being heard meant so much. I’ve now been volunteering for the Society in a variety of roles for more than ten years. And in any of those roles, the best part always involves spending time with people affected by dementia, those living with the condition and those who care for them.

So, the last three days – spent at the Society’s first Dementia Voice Involvement Retreat – have been a pleasure and a privilege. A privilege because I’ve learned a lot, as I always do, and a pleasure because I’ve made new friends, reconnected with old ones and laughed a lot.

The theme of the three days was involvement or co-production. In other words, we work with those who use the charity to provide the best possible outcome for everyone. As an acquaintance of mine put it this week in a well-used phrase: “Nothing for us without us”. Of course, any event like that has its challenges and there were one or two robust conversations along the way. Progress requires understanding different points of view and sometimes compromise but it is worth it. As a friend of mine said more than once during the Retreat, working with people living with dementia can be like herding cats.

But then, as my two faithful felines will attest, I love cats.

The Voices of Dementia

I’ve been actively involved with Alzheimer’s Society for more than ten years. Yesterday, I attended a regional conference at which we discussed the charity’s new five year strategy, Help and Hope and imagined the future of volunteering, amongst other things.

The positive can-do spirit was, as always, infectious and I left inspired by the next challenge. But if I’m honest, I’m more excited by another event which is a week away.

Next Monday, more than 50 of us will gather at a Quaker meeting centre in Birmingham for a three day retreat, designed by the Society’s Dementia Voice team. Everyone invited will either be living with dementia or will be a current or former carer of someone with a form of the disease. It’s the first time the Society has produced an event like this – long overdue, some might say. I was lucky enough to be asked to join the organising committee and I hope we’ve come up with a series of discussions and activities which will work for everyone.

But what I’m looking forward to most is listening – really hearing what people to have to say. If we are really to make a difference with what we say and what we do, then people for whom dementia is an every-day, living reality, have to be involved at every stage of our work. I know what my experience of caring for Mum taught me but my experience is mine and mine alone. Others, who care 24 hours a day, 365 days a year, have a different and much more challenging experience.

Only by listening to as many voices as possible can we be the force for change so badly needed.

What do we want? A Dementia Strategy? When do we want it? Now!

On May 17th 2022, I sat at the Alzheimer’s Society annual conference and was impressed by the words of the then Secretary of State for Health and Social Care, Sajid Javid.

We had been hoping to hear him talk about a five-year National Dementia Strategy. He didn’t. He talked about a ten year strategy and he seemed to “get” dementia. It was genuinely encouraging. His was the fourth Health Secretary’s keynote speech – all by different ministers – I’d listened to. Throw in a couple of Care Ministers, and a round half-dozen government representatives had told our conference that the strategy was very close.

I think the first mention of said strategy might have been around 2012 or 13 but to be honest, it’s so long ago, that precise dates elude me. Suffice to say, 2022 gave way to 23 and in the words of Diana Ross, I’m Still Waiting. And, crucially, so are the many hundreds of thousands of people whose everyday lives are blighted by dementia. Hundreds of thousands of people who still don’t receive the support they deserve. It’s a scandal. Dementia is the UK’s biggest killer and yet, in financial terms, it isn’t covered by the NHS. It’s a social care issue and we all know what a measly price successive governments – of different hues – have placed on social care. As a country, we don’t value those who work in social care and seem surprised when we can’t fill vacancies.

If we can’t or won’t resource social care, then it looks like we don’t care. And if society can’t care for those in genuine need, then I would suggest it’s a failing society.

There, I’ve got that off my chest. For a short while, at least.

Today, Alzheimer’s Society delivered a letter to Downing Street, calling on the government to keep its promise to deliver the national strategy. There is a mighty army of people in this organisation and other, vibrant, dementia charities, all committed to force those in power to commit to genuine change. One of the many inspirational people I’ve had the honour of working alongside is Tommy Dunne.

He told his story on BBC Breakfast this morning. Now, I’ve heard Tommy speak many times and every time I do, he says something which stops me in my tracks. This morning, he talked about his wife Joyce, about how much he owes her and the sense of guilt that walks hand-in-hand with dementia:

“I feel I’ve robbed her of her future.”

Untrue, of course, the robber is dementia, but a few words which say so much about living with this most cruel disease.

There’s another Alzheimer’s Society conference coming up. And perhaps another keynote speech, by this year’s Health Secretary. And perhaps another promise that the strategy is close. Perhaps, this time it will happen. Perhaps, Perhaps, Perhaps. In one blog post, I’ve moved seamlessly from Diana Ross to Doris Day. Maybe the government can make a similar move, from promise to delivery. Perhaps.

Every Day is the Same

Christmas – a special time. A time for families and friends to be together. A time to share old memories and to make new ones.

That’s the received wisdom that winks at us from every shop window, that shouts at us from television commercials. Of course, we know that isn’t everyone’s reality at this time of year.

Christmas Day is just another day for many whose lives are blighted by dementia. When I think of Christmases past, I do remember warm, loving family celebrations, but I also recall the years of visiting Mum in her care home, of handing over presents

and then opening them myself, of feeling guilty that I would head home after a while, while Mum sat in her chair, seemingly unaware of what day it was. I’d be with her on Christmas Day but I hadn’t been WITH her.

But I was lucky. For many, who care for loved ones at home, Christmas Day is exactly the same as the 364 days which have preceded it. There is no-one to share the care. There is no Christmas holiday.

Spare a thought for unpaid carers this Christmas. Sometimes unseen, often under-valued, rarely acknowledged. Without them, where would we be?

Bright Lights

It’s been quite a week for those working in the world of dementia. The announcement that #lecanemab might help those diagnosed early with #AlzheimersDisease is, as those who are far better qualified than me to pass judgement, a potential game changer is the most exciting development for some time. https://www.bbc.co.uk/news/health-63749586 The challenge now is to increase the rate of early diagnosis which remains stubbornly and frustratingly very low.

To invest in cure research is to play the long game, funding work now which will pay dividends in the future. Some of the work which led us to this point began in 1989.

But what of today? It’s vitally important that we continue to fund the type of research which has taken us to this point but looking for ways to improve the lives of those already living with dementia is just as crucial. This – too – can be through funding research – into care initiatives and modifications – but it can also be through pooling resources, working in partnership to achieve the best outcomes for all affected by dementia.

On Tuesday, I visited the Peterborough Dementia Resource Centre. It had been recommended to me by a friend who was so positive about what she’d seen there. The Centre is funded by a council contract and managed by #AlzheimersSociety but as well as the core services offered by the charity – dementia support is available every day with a cafe most days for those who want a cuppa – it welcomes other organisations with complementary skills and expertise. Another game changer? In many, non-joined-up areas, it should be. On the day I visited, there was a Falls Prevention clinic, a Peer Support Group for carers and medicine management advice, as well as my old favourite Singing for the Brain. I’ve waxed, probably not too lyrically, on these pages about the power of music to improve the lives of people living with dementia before. Here was further proof.

As well as Christmas favourites – I find it’s never too early to get into practice – I warbled my way through Side by Side and Show Me The Way to Go Home before I indulged in a little time travel – to Mum’s care home more than five years ago.

When words were beyond her in the last year of her life, smiles and a few songs were how we conversed. This song was a favourite of both of us. Mum loved the chorus – “Where?” she’d cry wide-eyed. Suddenly, surrounded by people I’d met only minutes earlier, I was back with Mum.

Every dementia story is different and every person’s experience is unique, but there are some things – even mice in fictitious Dutch windmills – which bring us all together. Bright lights in what can be the darkest of places.

I’d Have Loved To Be With Mum and Dad Today

I’m not an ardent Royalist but I can recognise the love so many had for the late Queen Elizabeth II. Her death has affected a large number of people and, perhaps, left the monarchy at a crossroads. And it’s left me with a gnawing ache – an ache to speak to Mum and Dad. Both loved the Queen and while neither was the sort to don Union Flag clothing, both had a reverence for the institution. They would have been moved by today’s funeral and and I would loved to have talk to them about it.

My mind went back to the summer of 1977. On her Silver Jubilee tour of the United Kingdom, the Queen visited our home time of Walsall in the West Midlands. Excitedly we elbowed ourselves into a position in Ablewell Street from which we would have a glimpse of the Royal car. I had just been given a Kodak Instamatic camera for my 13th birthday and this was a chance to capture something other than blurred family images. And capture I did. The Queen’s hat was a vivid green. I’m told Her Majesty was wearing it but the photo gave nothing away. To my credit, the hat was in focus.

I felt drawn to look at photo albums and even family cine film today. I miss Mum and Dad – as this blog attests – but that sense of their absence has been more striking since the Queen died. And I now feel the gap between us is greater than before. The Queen stood for a sense of permanence, a sense we have all lost.

By the way, that photo of the Queen’s hat is long lost but this, from Mum and Dad’s 40th wedding anniversary party in 2003, shows I haven’t lost (or found) my touch.

Back Home

This morning – more than five years after Mum left us – she came home. My sister and I took her ashes to a place she loved to walk to, less than a mile from the family home. The sun shone, a breeze whispered in the trees and we felt at peace. Why so long? I don’t honestly know but it hardly matters.

Mum remains as vivid in my mind today as five years ago but as we climbed the hill to gaze over the village, it was the pre-dementia Mum who was with me, the Mum who loved this place and its people – well, most of them. Dementia takes away but, for me, it can’t take everything.

Under The Bonnet

“Would you want to know if you were likely to develop dementia?”

It’s a question I have pondered often since Mum’s diagnosis and I still don’t know the answer. I was asked it by a research student and I’m not sure even I was convinced by my answer. More to follow but, first, a bit of background.

I grew up with a mild form of science-phobia. I was interested in science but when it came to learning about it in school, I was hopeless – bottom of the class hopeless. Recently, though, I’ve been trying to conquer that phobia, partly through taking a closer interest in the research undertaken by Alzheimer’s Society.

Nevertheless, it was with the tiniest bit of trepidation that I found myself going to dinner with a group of academics and research students a couple of weeks. It was part of an Early Years Researchers Retreat for Alzheimer’s Society funded students. I was to give a talk on communication – specifically talking to the media – as part of the programme of events and decided to take advantage of a dinner invitation to meet some of the participants in advance. Wisely, I thought, I chose to pass on the pub quiz – the memory of 1970s classroom humiliation has never completed faded. In the event, the decisive question had been about James Bond films so I might not have been such a liability.

My companions for dinner came from Lithuania, Italy and Suffolk. One – the latter whose name is Coco – asked me the question with which I started this ramble. Coco is a doctoral student at the University of Cambridge. Her Twitter handle explains she is, and I quote: “A PhD researcher at the intersection of spatial navigation…” No, me neither.

But, in terms a Duncan can understand, she is using Virtual Reality to help detect an early risk of dementia, before any symptoms. She works with Dr Dennis Chan, who uses the phrase “Under the Bonnet” as a way of describing attempts to identify people at risk of dementia who are experiencing changes to the brain which will one day lead to dementia.

So, Coco asked me the question. Would I want to know if my brain is changing?

Without a cure, is there any point in knowing ahead of time if I’m likely to develop dementia? I’ve seen what it did to Mum and albeit hers seemed a largely contented dementia, if such a phrase can ever be used, I’m not sure I’d want to know what was around the corner. Then again, if early treatment and medication could slow down the progress of dementia, surely that is worth it?

But my inability to come down on one side or the other – my Johnsonian Brexit conundrum perhaps and look where that led – is not the point of this post.

The point is….I have fallen in love with scientific research. I still don’t understand most of it but I’m drawn to its potential, its sense of the possible, maybe the probable. The enthusiasm and energy of the Early Career Researchers was infectious and gave me a palpable sense of hope. And hope isn’t something I’ve readily associated with dementia.

Time for Action

It’s @Alzheimerssoc Dementia Action Week. It used to be called Dementia Awareness Week but raising awareness, though important, simply isn’t enough. As those lovable 1970s mods Secret Affair had it: This is the time/The Time for Action.

In truth, every week is about action for colleagues at Alzheimers Society as it is for all the dementia charities, big and not-so-big. And while politicians occasionally make grandiose statements, promising overdue change, it’s the often-unheralded work of charity staff and volunteers which makes a real difference for those who need support in whatever area of their life.

But back to Dementia Action Week. This year’s focus is on diagnosis. Tens of thousands of people are living with dementia but without a diagnosis in this country. Due in part to Covid restrictions, diagnosis rates are at a five-year low. Without diagnosis, there is no medication and probably no support. We already know that people living with dementia suffered disproportionately during the pandemic – higher death rates, greater isolation, increased speed of decline.

It’s now more than 13 years since Mum received her diagnosis.

Mum celebrating her 70th birthday in 2007. There were already some signs that things weren’t right but it was two years before we had a diagnosis.

If things have improved since then, it isn’t by much. It took well over a year, probably over two, after Mum started exhibiting signs of dementia – memory loss, confusion, lack of concentration to name but three – before her GP finally agreed to refer her to a specialist. He only did that because my sister and I sat in his office – I had no right to be there as he wasn’t my doctor – and made it quite clear we weren’t leaving until he listened, really listened, to what we were saying. We knew Mum better than anyone and we knew that her changing behaviour wasn’t down to getting old as she was told.

Asking the same question over and over again is not called getting old. It’s called getting ill.

Research by Alzheimer’s Society has revealed that more than 90% of people affected by dementia believe that receiving a diagnosis has benefitted them. But as the National Clinical Director for Dementia in England, Professor Alistair Burns says, it isn’t only about the diagnosis itself, it’s about the quality of the diagnosis. Being told to go away and come back in six months, as Mum and I were, is cruel. We didn’t know what we were facing, what to expect, how to cope. A friend Tommy Whitelaw – @tommyNtour – has told of how he and his Mum travelled home on the bus after her diagnosis, cast adrift by a society which didn’t seem to care. Check out his blog – tommy-on-tour-2011.blogspot.com.

Tommy Whitelaw – a tireless and inspirational campaigner.

The Secretary of State for Health and Social Care spoke of putting dementia on a par with cancer at this week’s Alzheimer’s Society conference. This would mean a ten year strategy to make a significant difference, amongst other things. Bold words, encouraging words, but nothing without action. There it is, that word again! Sajid Javid’s challenge is to do what few politicians have done – to permanently change the landscape for people affected by dementia. He talked of “seismic change” being required. I hope he means it and is true to his word.

The Secretary of State for Health and Social Care, Sajid Javid, being urged to be true to his word by Alzheimer’s Society Ambassador and campaigner Joy Watson.

Perhaps, if I’m still wittering away on this blog is 13 years time, things will really have changed. I hope so, I really hope so.

Mum and her Mum

I’m writing this a couple of days before Mothering Sunday. My sister and I provided cards and gifts every year but it wasn’t a day Mum was particularly fond. I think she felt it was more a commercial exercise than anything else. And, as we both had such a strong bond with Mum, we didn’t need a special day to celebrate our relationship.

Still, Mum will be in my mind and heart on Sunday. That bond remains and almost five years after she died, and 13 years since the diagnosis which kicked off the long goodbye,

Much has been written of the chord which binds mothers and children. Of course, not all relationships are as positive. I was very lucky – I know that and I’m very thankful.

Mum – too – had close ties with her mother.

Mum’s mum on her wedding day 92 years ago.

A family holiday for Mum – in the middle with glasses. The bond with her mum was very strong.

I recall the day my grandfather died and we had to wait for my grandmother to wake to tell her the news. Mum said it was one of the worst things she’d ever had to do. They cried together.

Years later, in the closing months of Mum’s life, she would cry again, calling out for her mother in her confusion and despair. If one moment summed up the cruel heartbreak of dementia for me it was my mother – at the age of 80 – crying unconsolably:

“I want my mummy.”

That memory will never leave me but fortunately other, much more positive memories, endure. And it’s those memories which will cheer me on Sunday, as they do constantly.