March 2024

I was very pleased to represent Alzheimer’s Society on the first day of the BAPCO annual conference. Who are BAPCO you might ask? I certainly did when I was first asked if I could attend. The answer is BAPCO stands for the British Association of Public Safety Communications Officials. In other words, the conference was all about the technology used by the emergency services. BAPCO have kindly adopted Alzheimer’s Society as their charity of the year – hence the invitation to attend the conference.

So, amid discussions about Fully Immersive Virtual Reality Learning Solutions for Training in Emergency and Hazardous Situations and Learning from a Cyber Attack, there were unplanned and unscripted conversations about caring and coping in a very personal emergency – dementia. I found myself talking about Mum, as I often do in these situations. Everyone’s dementia story is different but there are so many similar threads. We have so much in common but often feel so alone.

So, Mum has been on my mind a lot this week and I can’t let International Women’s Day pass – with Mothering Sunday on the horizon – to reflect how much I owe her. Owe her today, as much as ever.

There are so many inspiring stories of women who have truly changed the world or at least their part of it.

One is my friend Sarah whom I was fortunate enough to work alongside when we were both Trustees of Alzheimer’s Society. Away from her voluntary work, Sarah cracked more than her fair share of glass ceilings in a stellar professional career – the first non-marine MD of a Lloyds broking firm, Head of Arts and Culture for London 2012, CEO of The Design Council. An unpaid carer herself, she was an unwavering voice for people affected by dementia. She taught me a lot about how to challenge firmly but with kindness and support. Sadly, as she contemplated retirement, Sarah was struck down by pulmonary fibrosis which, after an unsuccessful lung transplant, claimed one of the most vivid people I have ever known last December. We will be celebrating her life at a service in London next week. She was much in my thoughts yesterday.

On International Women’s Day, we reflect on the achievements of people like Sarah but also all the women who made and make a real difference to those around them but whose contribution often goes unrecognised. Mothers, volunteers, carers. According to the 2021 census, 60% of “informal care” – i.e. unpaid, behind closed doors – is provided by women. I have several friends who are doing this now for loved ones with dementia, alongside full time jobs. I couldn’t admire them more.

I (No Longer) Wish It Could Be Christmas Every Day

I have always been something of a Christmasphile. I say have – I should say had. Christmas was always a big deal in our house as I grew up. And I loved it. My personal library is filled with festive memories. The flickering tree lights which crept through the crack in my bedroom door in our first family home. Waking up on “Christmas morning”, rushing in to my parents’ bedroom to find out they were just going to bed, not getting up and it was still Christmas Eve. Our first Christmas after relocating back to the West Midlands in 1979. Dad breaking a floorboard in the living room while trying to create The Railway Children in a game of charades. Urging Mum to stay up on Christmas Eve while Dad was a Midnight Mass, so I could tell both together that I was engaged to be married. Christmas in our first married home, hosting Mum and Dad after they’d hosted me for so long.

Happy, happy memories.

This Christmas will be quite different for a number of reasons and the levels of Christmas spirit in my festive tankard are a little lower this year. Lower but I’ll still celebrate and there will be plenty of smiles and laughs. And, as I do every Christmas, I’ll think of those for whom December 24th, 25th and 26th will be like every other day of the year. Those on the streets, those with chronic illness and, closest to my experience, those whose lives are lived in the shadow of dementia.

Mum loved Christmas but in her later years, the festive season meant less and less until it seemed to signify nothing at all. After her diagnosis, I encouraged her to write cards and send greetings – Mum would normally include a letter in many of the cards she sent. I remember popping in just before Christmas in 2009, the year of her diagnosis to find the house festooned in cards. Hundreds of them. Wow. I knew Mum was a faithful correspondent but this was off the scale. I glanced at the cards – two next to each other had suspiciously similar writing…and the same names. Unbeknown to me, Mum had kept every card from the previous Christmas – Dad’s last – and had put them all up again. She was thrilled. She had so many friends (true, but…) and I wasn’t going to do anything to burst that small bubble of joy.

So, despite missing Dad – his Les Dawson rendition of carols on the piano and the recycled festive jokes – Christmas 2009 was a special one for Mum and, by extension, for all of us. Subsequent Christmases, in Mum’s care home, were different but special in their way.

For many, Christmas 2023 won’t be particularly special and will be the same as Christmas 2022 and many before it. And the same as every other day of the year gone by. It might be December 25th but caring is caring and doesn’t change. Very little changes.

The Longest Goodbye

A friend of mine is saying goodbye to her mother this weekend. She’s actually been saying goodbye to her, slowly and painfully, for several years but the last farewell is now close. She and her family, providing a constant presence at her bedside, are very much in my thoughts.

I can’t help but reflect on Mum’s final days, now more than six year ago. We had been losing her, inexorably, for a decade or more by then. A steady, heartbreaking decline. In the final days, she seemed out of reach, conscious only briefly. But at that point, as in her whole dementia story, Mum had love and care – the best we knew how to offer. Just as my friend’s mother has this weekend. In the end, it’s all we can offer.

I’ve just read an article on how we can describe the reality of dementia while still trying to offer hope. The long-running debate has been given extra currency after an advertisement promoting the search for a cure by Alzheimer’s Research UK was criticised by Alzheimer’s Scotland for portraying “such negativity and hopelessness”. How do we paint a realistic picture of what dementia does to an individual and those around them, while still offering a light, however dim and flickering that might be for some?

Be in no doubt. Dementia is cruel. It brings untold pain and suffering. For some, there is no comfort. Those losing their sense of self, those who watch the people they love most of all slipping away from them, day by day.

There has to be hope, though. Not for those like my friend’s mother perhaps, but for others, still to be diagnosed. New drugs offer new treatments which might, at least, slow down the decline. And the search for the silver bullet, a cure, continues with some of the best scientific brains in the world fully engaged. I know. I’ve been fortunate to meet some of them.

Until that day, the best treatment that most of us can offer is love.

When You’re Alone and Life is Making You Lonely…

…You can always go to a dementia-friendly Memory Cafe.

Regular readers of this blog will know how important music is in my life, and one of the songs which struck an early chord with me was Petula Clark’s Downtown. In my teenage years, my love of that song didn’t put me high in the cool chart and maybe I didn’t advertise it too much but to be honest, I didn’t care. I loved it then and still love it now. Years later, by the way, I went to see Petula Clark singing it live at the Royal Spa Centre in Leamington. Another happy musical memory as well as a rare example of being the youngest member of a concert audience.

But why am I wandering along those downtown streets of yesteryear here, you might well ask? Well, a few days ago, I found myself singing the familiar lines about forgetting troubles and cares at a Memory Cafe, run by the Grand Theatre in Wolverhampton. It’s an award-winning Memory Cafe to be precise with people living with dementia and their carers singing, dancing, smiling and laughing.

As I experienced with Mum so often, music provides a connection which, in the cruel world of dementia, often proves elusive.

I found myself picturing Mum in the room with me, particularly as Julie – one of the two singers – turned to Che Sera Sera, a staple of my setlist with Mum.

There’s a poignancy to songs like Fings Ain’t What They Used To Be but the smiles around the room were infectious. Even I was persuaded to dance – almost strong-armed into it, you might say – and that doesn’t happen very often.

One of the regulars has described attending the cafe as “a lifeline” and “…like being given a great big hug… .” And we all need one of those from time to time, don’t we?

Cricket Should be Unforgettable

I don’t mind admitting to a flutter of pride this morning when the Croydon Singing For The Brain choir launched day three of the final Ashes Test at the Oval with a rousing rendition of Jerusalem. Today’s cricket is about whether England can put themselves in a position to tie the series with Australia, but it’s also about dementia. The day is dedicated to Alzheimer’s Society as part of our Sport United Against Dementia campaign.

It’s more than four years since a group of us sat down to explore ways in which we could harness the power and influence of sport to raise awareness of and money for the challenge of dementia. In that time, we’ve had a pandemic which suppered some of our early ambitions, but we have also been centre stage at Wembley and the focus of campaigning by the men’s and women’s England football teams, and now the England cricket team. There have also been race meetings raising funds for Alzheimer’s Society and there are plans for other sports to take prominent roles too.

We shouldn’t ignore the fact that, in the past, sport’s response to former players living with dementia has fallen short, sometimes shamefully so. There is much still to be done and what’s happening at the Oval, however encouraging it is, shouldn’t divert attention from that. We must do better to help those who’ve entertained us so wonderfully in the past.

Not only can sport help to raise funds, boosting care and turbo-charging research, but the emotional connection can have a significant impact for those living with dementia. Go to the Alzheimer’s Society website – alzheimers.org – for stories which describe this far more eloquently than I can. Mum loved cricket, visiting the county ground at Edgbaston regularly on her way home from school in the early 1950s. When my interest in the sport grew, she’d talk of her favourite players – Tom Dollery, Eric Hollies and Martin Donnelly. The 1972 Ashes series in England was when my love of cricket sparked.

“Stackpole’s out!”

I have a very vivid memory of Mum – very excited – shouting to tell me that Australia’s most consistent batsman of the series – opener Keith Stackpole – had been dismissed. A couple of years later, when Dad and I popped out for fish and chips, England took three Indian wickets for no runs. Mum described each one. No wonder I became a sports journalist. Mum took me to my first cricket match – a benefit game for the former England fast bowler David Brown – my first county championship game and then, in 1975 for my 11th birthday, my first Test match – appropriately enough an Ashes contest.

Mum was so proud when she took her eldest granddaughter Lauren to her first cricket match – a one-day international against India at Lords. I’m not sure Lauren was quite as delighted. Together, Mum and I watched England in Trinidad and enjoyed a thrilling World Cup match between Pakistan and South Africa at Trent Bridge. Wherever we went, Mum insisted on making sandwiches to make sure we wouldn’t go hungry. In fact, we could probably have fed most of the stand in which we were sitting but that was Mum. Never knowingly underfeeding those around her.

After her diagnosis, we went to a one day international at Edgbaston but it wasn’t a comfortable experience for her. Today, sports grounds are starting to make strides towards becoming dementia friendly but in the first twenty years of the century, a stadium could be a frightening, unsettling place.

Mum, though, retained her love of cricket until the last few years of her life. She might not have been able to recall the name of the man to whom she’d been married for nearly 50 years, but she still knew who Ian Bell – Warwickshire’s leading player of recent times – was and loved to hear of his success.

Cricket, like all sport, should be unforgettable but for many – sadly – it isn’t. Together we can make a difference.

Don’t Quote Me, But I’m Quite Excited

It’s more than 14 years since I took my first tentative steps into a world which has claimed a fair proportion of my life since then. In February 2009, when Mum was diagnosed, I knew very little about Alzheimer’s Disease or dementia. In fact,I certainly couldn’t have told you that Alzheimer’s was one of many different types of dementia.

What followed was a crash course in the cruellest of conditions, a lot of tears, some very sad times, but also some of the most rewarding experiences of my life. Today, July 17th 2023, is probably the most exciting day in all that time. Today, at an international conference in Amsterdam, we’ll find out the latest trial results of a drug called donanemab which earlier trials have suggested might slow down the progression of Alzheimer’s by as much as 36%. Cure? No. But if those initial trial results stand up to further scrutiny, then a person diagnosed at an early stage of Alzheimer’s will be able to live better, longer before the disease takes hold. The key words there are diagnosis and early because donanemab, like lecanemab another drug which promises much, is only effective if a patient is diagnosed at the start.

There’s the little matter of government approval and affordability to deal with too, but for the first time,I’m genuinely excited that the game might be changing.

Mum, today is for you. It couldn’t change your life – it might not change mine – but it might just make all the difference for some.

The Love of a Parent

I was very fortunate – I enjoyed a very positive relationship with both of my parents. As I’ve said before on these pages, my relationship with both of them matured into a friendship, first and foremost. The parent/child dynamic evolved into holidays together and evenings spent out of choice not any sense of duty. For that, I will always be very grateful. Not for me, Philip Larkin’s experience in This Be The Verse – one of the most famous opening lines in modern poetry.

Of course, my relationship with Mum changed in the last years of her life. Conversation gave way to shared joy over music and, for a time, sport. I spent this morning speaking to a student who is working on a dissertation on how to improve social care in the UK. Now there’s someone who likes a challenge! We talked of how Mum responded to music and cricket and she told me how her grandfather, in his later days, would respond positively to videos of Welsh rugby and the sound of a male voice choir. Connections – warm and life-affirming.

I’ve been thinking a lot about my parents recently. Alongside the friendship and sense of equality which developed, there was still the common sense, the advice, the non-judgmental response. If ever I wasn’t sure what to do, I could rely on them for support and an answer – or several in my father’s case: “When I was working at ……….. .”

My mind goes back to the day when my A-Level grades fell short of what I needed to go to university, or at least, the university I’d set my heart on attending. Briefly, I was paralysed by a sense of failure but Mum took over. With minutes, or so it seemed, she’d fixed up an interview for me at my local Polytechnic. These were the days before the internet so there was no online clearing to consult. She just picked up the phone, found out whom she needed to speak to, got through to them and that was that – all while I was mopping miserably in the corner. It turned out to be the ideal solution. Much, much later, when Mum needed to move into a care home, I hope I moved with similar speed. I know, like she’d done all those years before, I just wanted the best possible outcome. Mum (like Dad) – a constant, loving support.

Recently, I’ve found myself at another crossroads and I’ve missed Mum and Dad more than ever. Don’t get me wrong, I know what I need to do but I’ve missed that support, that desire to listen, really listen.

I was chatting to an old friend yesterday and realised that nothing ever replaces that relationship – not marriage, not friendship. I have plenty of support – I couldn’t ask for more – but parental love is unique. Not everyone is blessed with what I had and perhaps losing Dad, suddenly, to cancer and Mum, gradually, to dementia was more painful as a result.

But I wouldn’t have missed the love and joy for the world.

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.