It’s difficult, probably impossible, to appreciate what lockdown means to people living with dementia. For the past three months or so, I have been speaking to someone with vascular dementia every week. We’ve become friends, each – I hope – enjoying the regular contact. But it’s been heartbreaking to observe this most sociable of people shrinking as he’s denied the daily contact with friends which were so essential to who he was/is.
He can’t understand why his previous life has gone. Our conversations have become more stilted, more difficult to follow. But, as happened with Mum, shafts of insight remain. Yesterday, as we sang lines of songs and laughed, he stopped and said:
“It’s just hard. You start thinking about yourself…. .”
It reminded me of fractured conversations with Mum, the odd comments that took a knife to my heart:
“It wasn’t supposed to be like this.”
“I don’t know where it is and I don’t know what to do.”
Mum was fortunate – fortunate? – to live in a loving care home, with regular visits from my sister and I. Looking back, though it didn’t seem like it at the time, it was quite a simple world. Mum was in lockdown before the word became part of everyone’s daily conversation. Her steady decline had gathered pace – she was following the expected dementia path.
For my new friend and others, that downward path has become much steeper, the decline speeded up.
Keeping in touch and keeping active has been a theme of the Three Nations Dementia Working Group @3NDWG during lockdown. They’ve worked tirelessly to keep people whose lives are affected by dementia connected. I try to attend every session as a guest and I never fail to learn something. When it comes to dementia, none of us ever stop learning.
Today’s session was about keeping active and it touched on the positive impact of music. I’ve spoken before about Alzheimer’s Society’s joyful Singing for the Brain and today I was introduced to a charity – http://www.musicfordementia.org.uk. It brought back memories of many, many precious moments spent with Mum. Towards the end of her life, music was often the only connection I had with Mum. Meaningful conversation – or at least conversation which seemed to me to mean anything – had all but gone, but the music lived on. There was music in the house when I was growing up – often, it seemed to me, introduced by Jimmy Young or Pete Murray on BBC Radio 2 – but also on record. Mum had a modest collection of 78s and vinyl, all of which I inherited and some of which I still listen to today.
Mum loved the great musicals and had sung in the chorus of the mighty West Bromwich Operatic Society in her younger days. The family connection with WBOS endures to this day although, luckily for them, I have never offered my services to the chorus or in any other role for that matter.
Mum and I sang some songs from the shows – a selection from Oliver, Oh What a Beautiful Morning from Oklahoma, something from Showboat. Mum’s eyes would light up from the first beat. There were her favourites like Magic Moments and Pickin’ a Chicken. At first, she knew most or all of the words. Later, the lyrics went but the tune remained.
I’ve written before about how Mum loved Ronnie Hilton’s Windmill in Old Amsterdam with its various mice scampering up the stairs. And then there was this – another song from my childhood which I introduced as we expanded our repertoire and which, one day, my wife captured in brief – a concert bootleg if you like. This was about six months before Mum died and shows, I think, how much pleasure music had always given her. Apologies for the lead vocal but with thanks to The Bachelors for providing the words and music, I think this shows how something like a song about a unicorn can reach the parts other areas of life can’t.
Mum wasn’t a radical, something you might have gleaned from reading these ramblings over the years. She gave up work when I was born, returning in a series of part-time, voluntary roles after my sister and I had grown and gone out to make lives of our own. In between times, she took care of the family. Unpaid. Her role was full time, her hours went way beyond a traditional 9-5 but, apparently, she didn’t “work”. She did volunteer though. Meals on Wheels, a coffee shop at the local hospital and various charity campaigns. Mum knew her own mind. She rarely spoke out – possibly because of a “traditional” upbringing – but she was strong and resolute. And, along with my father, she encouraged me to think. To reflect on what I hear. And the lockdown has given me more time than I would normally have to do just that.
Recently, I attended an Alzheimer’s Society webinar which confirmed the disproportionate burden dementia places on women. Far more women than men develop dementia – roughly 60% to 40% but when it comes to caring, those figures are even more stark. Globally, 71% of the hours of care for people with dementia are undertaken by women.
Dementia acts as a case study for more general trends in society. Take those caring statistics and substitute dementia care for childcare. It’s estimated that a fifth of female carers swap full-time work for part-time employment to create time to care. And those are the ones who have any time to have an outside job at all. The Alzheimer’s Society calculated the cost of dementia to the UK as £34.7bn a year, of which unpaid (usually family) care accounts for £13.9bn.(i) That’s almost 14 billion pounds of care the state should be paying for, as it does for cancer and heart disease.
Very recently, my wife had to win a long drawn-out, painful argument for equal pay. It demonstrated how far we are from true equality. And the very inequality of dementia care – indeed social care in general – feeds that gender inequality. Women pay a greater price in every way.
Of course, Covid-19 has emphasised how people affected by dementia – those living with it and those caring for them – are often paying the ultimate price in this pandemic. According to figures from the Office of National Statistics in May, one in five people dying from Covid-19 were living with dementia. And women with dementia account for 28% of all female deaths from the virus. (ii).
As I’ve had greater time to reflect during the lockdown, I’ve also had the chance to read more and one of the books which is making a real impact is Helen Lewis’ Difficult Women. A History of Feminism in 11 Fights:
“In the west, where populations are ageing rapidly, a social care crisis is looking. Who will look after the elderly if the state cannot afford to? The answer is depressingly simple – mostly women. For no money.” (iii)
Dementia isn’t fair. It doesn’t discriminate and though a good diet, moderate alcohol intake and regular exercise can mitigate against developing symptoms, Mum followed all three and it didn’t save her. And within this lack of fairness, there’s deeper inequality. I like to think that, if she were able, Mum would be banging this drum too.
When Mum was diagnosed with Alzheimer’s Disease eleven years ago, I knew very little about what it meant. There was nothing on offer from the consultant – come back in six months – and I had no concept of what support I might be able to take advantage of. Cue a call to the Alzheimer’s Society and the start of a relationship with the charity which continues to this day. I had no idea – why should I have had? – that it would lead to my becoming a trustee of the charity. I heard someone today – a son like me – describe his mother’s diagnosis leading to an obsession with dementia. Maybe I, too, am obsessed – Mum might have gone but dementia remains a huge part of my life.
But, to return to those days in the spring of 2009 when I knew next-to-nothing and felt quite scared of what lay ahead for Mum. Public awareness of dementia was very limited and often stretched no further than having a laugh about someone being forgetful. I remember clearly a boss of mine forgetting something and a stage whisper from a member of her team – “Alzheimer’s”. I’m ashamed to say I laughed. I had no sense of the impact the disease had, no sense of the unravelling which can follow a diagnosis.
Fast forward to 2020 and things are still far from perfect. There is greater awareness of dementia but its impact usually remains a mystery for all but those whose lives are directly affected by it. It is now spoken about, however. I remember being so proud when Mum said: “I’ve got Alzheimer’s and I’m not going to hide it..” or words to that effect.
If you want to learn about dementia, listen to someone who’s living with it. Today, there are many, many people who share their stories and recently, I’ve been listening to a couple of podcasts which put the people’s lived experience at the heart of what they do.
Today, on my morning run, I was accompanied by someone I’ve come to regard as an old friend – Wendy Mitchell – whose book “Somebody I Used to Know” is probably the best personal account of dementia I’ve read. Wendy was talking on the BBC Radio Sheffield podcast “Dementia and Me.” Later, I dipped into the lives of Chris Roberts and Jayne Gooderick on Pippa Kelly’s “Well I Know Now…”. Chris talked about his experience of the pandemic lockdown, about how he seems to be losing some language. That, sadly, is a common theme. Wendy used the phrase I was taught while taking the first few steps of my dementia journey – when you’ve met one person with dementia, you’ve met one person with dementia. So true.
These podcasts should be required listening for everyone who has any influence over social care policy. I’d pay good money to put Matt Hancock or the care minister – that isn’t an oxymoron in case you’re wondering – in a room with Wendy, Chris, or any of the many people living with dementia who inspire me.
Thanks to them, dementia is spoken about more than it was when Mum left her consultant’s room with a diagnosis and nothing else on that cold February morning in 2009. There’s a long way to go but at least there’s now a conversation.
It’s a question I asked in this blog many years ago, when Mum was still trying to live independently at home. I feel like something of a fraud when I talk about being a carer myself – I was strictly part-time, caring from a distance. I moved in with Mum for a while when Dad died and Mum was coming to terms with her diagnosis of Alzheimer’s Disease. As her dementia tightened its grip, and before we arranged for a caring company to visit her morning and night, I would sometimes pop in to prepare a bite to eat for her and get her ready for bed. Nudging her in the direction of the shower – something she grew to hate – and then cajoling her to go to bed when it seemed the last thing she wanted to do, always required some ingenuity. I found it exhausting, emotionally rather than physically. I could only imagine the toll of doing that, day in and day out, but I knew that was the reality for many people.
I always felt I should be doing more and quickly learned that was the perpetual state of supporting a loved one with dementia. However often I visited, whatever help I offered, it never seemed to be enough. The logical extension of my internal monologue was to move in with Mum full time and I thought about it often. Dad had made it clear before he died that both my sister and I should continue to live our own lives and that’s what we did, although those lives were now lived in dementia’s shadow.
I took Mum on holiday twice. Both were happy occasions, filled with love and challenges. On one occasion, I was awoken by Mum heading downstairs, fully dressed for the day ahead, at 2am. I tried to coax her back to bed but her logic was impeccable. “I’m not tired and I’m up now so I might as well stay up.”
There are charities which support carers but – and I hate to sound like a cracked record – the cost, financial and emotional, to those who care is enormous. It’s time that was recognised. The fact that we still don’t have a coherent, costed social care policy in this country speaks volumes. Time and again, we’ve heard politicians tell us that definitive thoughts on social care, in the form of a government green paper, is imminent. Time and again, we’ve been let down.
What better time for that policy to take shape than in Carers’ Week, in the heart of a pandemic, which has taken a disproportionate toll on people who require care? Don’t forget, a quarter of the people who’ve died from Covid-19 in this country had been living with dementia.
The time for empty words is well and truly over.
When Dad was first diagnosed with Non-Hodgkins Lymphoma, less than four months before the disease claimed him, he talked about us looking after Mum after he’d gone but continuing to live our own lives at the same time. Both my sister and I were working full-time – she had three children at home too – so it was always unders
“We’re on the beach, waiting for the tsunami with a bucket and sponge.”
The words of someone at the front line of dementia care and support during the Covid-19 pandemic. It chilled me. I know that supporting people living with dementia during a lockdown brings its own particular challenges but some of the stories were truly shocking. Alzheimer’s Society staff can’t provide the face-to-face support that many have to come to rely on. Telephone support, the best alternative at the moment, is often challenging for the recipient and draining for the person providing trying to help.
It’s often said, and usually by politicians, that coronavirus doesn’t discriminate. The high rates of death in BAME communities suggest otherwise and it’s hard, perhaps impossible, to argue that there aren’t economic and social factors at play here.
From talking to carers, I was aware that people with dementia were often hidden victims of this pandemic but figures released by the Office for National Statistics lay bare the extent of the suffering. According to the ONS, of the 33,841 deaths from Covid recorded in England and Wales between March 1st and April 30th, 20% had dementia.* Think about it – one in five of those killed by this pandemic were living with a form of dementia.
There are other, equally frightening statistics about deaths in care homes and of people being cared for by agency staff in their own homes. Of course, not all of these people were living with dementia but the ONS reports that of people with pre-existing health conditions, 42% of those who died in care homes had dementia.
These are often untold stories. Stories of people living with dementia who don’t understand or remember why their loved ones no longer visit them. Stories of those loved ones who say a final goodbye via Facetime, denied the chance of one last hug. In Mum’s final days, I held her hand constantly. I hope it brought her some comfort. I know it did for me. I’m grateful I was able to offer one final, simple act of love.
Every death from Covid-19 is tragic, leaving families and friends bereaved but please don’t tell me that coronavirus doesn’t discriminate..
I keep thinking of the image of the beach and that mop and bucket.
*Office for National Statistics – Provisional figures on deaths involving the coronavirus (COVID-19) within the care sector, in England and Wales. May 2020
The first lesson I learned when Mum was diagnosed with dementia 11 years ago was one which particularly resonated with me today. When you’ve met one person with dementia, I was told, you’ve met one person with dementia.
Today, I attended an online session run by Innovations in Dementia. It featured three people living with dementia talking about their experiences of lockdown and the pandemic. The reflections ranged from fear and uncertainty:
“…it’s a bit like being diagnosed again…”
to a sense that the lockdown has been liberating:
“…we have become more because of the lockdown…”
to the idea that little has changed:
“For us this is normal. We spend a lot of time in lockdown.”
Confusion was a common theme:
“I know where we stood yesterday. Now I’m confused. We need straightforward information for us to be able to cope.” I’m not sure that only applied to people living with dementia, by the way. A bit of straightforward information would be extremely welcome at the moment.
The experiences we heard about were as individual as the people who shared them but there was one, over-riding emotion – that the pandemic should be the start of something more positive for people affected by dementia. There was talk of a “new normal” (I’m beginning to tire of that phrase) “where we don’t talk about dementia – we just talk about people.”
And a challenge:
“Isn’t Covid a wonderful opportunity to change society?”
It is indeed. I’d love to think that perceptions of dementia will change forever. Perhaps they will. For the time being, all we can do is live in the present which is the experience of everyone whose life is directly affected by dementia. The thought which stayed with me longest after today’s session was this one:
“I’ll worry about the end of this when it happens.”
It’s three years this week since Mum died. Three short years in some ways and yet, in others, it seems like an eternity. I found myself thinking about how I felt when she died when I wrote an email to a friend whose husband has died after living with dementia for several years. The gradual decline associated with many forms of dementia means we have years to prepare for the end and yet it still comes as a shock.
Some things have changed in the world of dementia since May 2017. I think there is greater awareness of the disease amongst the general public and the growth of dementia friendly communities hopefully means life is slightly easier to navigate. So much hasn’t changed, or hasn’t changed enough, though. Care for people with dementia remains in the social care arena and this government, like many before it, appears to have no idea how to fund it. The disparity between hospitals and care homes during this pandemic confirms a lack of understanding of chronic diseases like dementia. It’s as if instances of Covid-19 in care homes took some by surprise. The reluctance to publish statistics until pressured into doing so offered further evidence of the long-term failure to address the issue of social care.
So, will I be able to strike a different tone if and when I mark the fourth anniverary of Mum’s death? I hope so. There are few positives to cling to at the moment but a realistic appraisal of the challenges of providing care to people who need it outside of a hospital environment might be one. We’re told we’re heading for the worst recession in living memory and beyond and ghat means money to solve the care conundrum will be hard to find. But find it we must. As the number of deaths from Covid-19 continues to rise, even as we’re told we’re “over the peak” (not for some, Mr Prime Minister), we must address the issue once and for all. If not, what does that say about a country which doesn’t care?
Three years on, I still miss Mum. Or rather two Mums. The Mum who lived with dementia and the one, pre-the early 2000s, who gave me every opportunity I could have asked for. But I’m glad she was spared this. At least I had the chance to say goodbye.
Three years ago, Mum was in the last two weeks of her life. Her final dementia-generated decline was underway. I’ve been thinking a lot about that time recently and not just because the anniversary of her death is so close. Rather, I’ve been trying to imagine going through what so many are going through at the moment. Forced separation from those closest to them and the fear that they might not be able to spend precious closing time with them. I can’t really appreciate what that must be like. My sister and I spent Mum’s last four days at her bedside. She was barely conscious to start with and then not conscious at all. But we had the chance to say goodbye: To tell her that we loved her and, perhaps most importantly of all, to give her permission to leave us. She had lived with the later stages of dementia – depleting, demeaning dementia – for several years and it was time to go. We were grateful, if heartbroken, to spend those last days with her.
Despite everything, Mum was still Mum. She was still a person, right to the end. And that’s why I’m so angry that, throughout this pandemic, the impression has been given that people in care homes – residents and staff – are an afterthought. Leaders in the care home sector have spoken of frighteningly-large percentage rises in recorded cases – Care UK referred last week to a 74% rise in Covid-related deaths in its facilities in only six days. And yet, yesterday (Monday April 27th) the Prime Minister said this:
“If this virus were a physical assailant – an unexpected and invisible mugger, which I can tell you from personal experience it is – then this is the moment when we have begun together to wrestle it to the floor.”
If you have a loved one in a care home, it doesn’t feel like that. If those who run care homes are to be believed, that isn’t the experience behind their closed and locked doors. According to Public Health England, in the week to 19th April, 651 of the 682 coronvirus outbreaks reported across the whole of England occurred in care homes. So, while hospital admissions might be falling and reported deaths might have reduced, it wouldn’t appear to be the case in care homes. And these are people – not statistics. People who’ve lived long and often very fulfilled lives. People who deserve to be cared for by staff equipped with the same personal protective equipment as hospital staff. People who deserve better than to die away from family, often not understanding why they are no longer seeing familiar, loving faces.
We’re often told that Coronavirus does not discriminate. Why, even the Prime Minister and The Prince of Wales have had it. But discrimination isn’t down to the virus, it’s down to the national response. There’s a troubling trend on social media and in some areas of the national press that to question or dare to criticise our national response is to be disloyal at a time of national emergency. Trust in the science, trust in the government and we’ll get through this together.
Infection control in care homes is more difficult than in hospitals. Isolating someone living with dementia is a challenge, for example. But the least we can expect, the least we deserve,is for everyone in a care home – residents and staff – to have as much value as the rest of the community. And sometimes it just doesn’t feel that way.
These are strange and troubling times. Every day, the threat posed by coronavirus seems to increase and I don’t know about you, but that threat seems to creep ever closer.
As we keep being told, Covid-19 is no respecter of age or station-in-life. Early evidence suggested that those with underlying health conditions were most vulnerable and while that is almost certainly still true, leading an active and healthy lifestyle seems to be no guarantee of escaping the worst of the virus.
For people living with dementia, coronavirus carries a special threat. Many are isolated and fear that the advance of their dementia will be accelerated by this isolation. I heard from one lady last week who feared that if she didn’t have someone to talk to regularly, she would lose the ability to speak. She would simply forget how to form words. How must that feel?
And what of carers? I know someone who has to explain coronavirus to his mother every day, several times. How can we expect that person to follow hand-washing guidelines or social-distancing?
At Alzheimer’s Society, we are launching Companion Calls, a weekly ‘phone conversation with someone living with dementia or a carer. People who are isolated must not be forgotten. These calls alone can’t make up for going to a Singing for the Brain session or spending time in a Dementia Cafe but they should make people affected by dementia feel they haven’t been forgotten.
But there is much more to do. At the moment, people living with dementia do not fit into Public Health England’s “Increased Risk” category. That category gives access to restricted supermarket opening, the times some shops are open only for people at increased risk or to key workers. Surely dementia – as the biggest cause of death in the UK – should be in the restricted category.
And what of people with dementia who show symptoms of Covid-19? Some might not be able to describe their symptoms because of communication difficulties. It could lead to delayed diagnosis with all the danger that entails.
We also need assurances from government that people with dementia will get equal access to critical care. If someone with dementia goes into hospital, particularly alone as restrictions on visiting remain tight, will that person receive the most appropriate care? Without the input of a carer or family member who knows that person better than anyone, it might be hard for clinicians to make the best decisions. I know from experience with Mum. Even at a relatively early stage of her Alzheimer’s, she was unable to describe how she’d come to fall at home. Without me able to explain about her condition, I’m not sure she would have merited the treatment she received.
People with dementia are not a special case in the coronavirus crisis. Their rights are no greater than anyone showing symptoms of Covid-19. But nor are their rights inferior.