An edited version of a talk with Innovations in Dementia 14 October 2021
I want to put forward two interlinked propositions, which I hope won’t prove controversial, but which I don’t believe are firmly embedded in understanding and discourse, in policy or practice as they should be:
- People’s experience of dementia as a health condition is as much about the nature of the world they inhabit as it is about the impact of the underlying condition and that people’s health can decline or improve as a result of extrinsic factors that either do, or which can fail to, anchor people in the world and their own selves
- People’s ability to live their lives with dementia, is, as with disability more generally, is a product of the interaction between people who have an underlying health condition and social structures which can either enable or disable them. It is a matter of respecting, protecting and ensuring people’s human rights to remove those barriers and to put support in place for people to live their lives on an equal basis with others.
If you accept these two assertions, then it is both feasible and I would argue, morally necessary, to pursue social change that averts avoidable decline in cognitive, mental and physical health and which removes the barriers that stop people with dementia from participating in society. That is to say, as for everyone, social inclusion is the route to wellbeing.
I’m going to start by talking about my dad, who died just over a year ago in September 2020.
The most important person in my dad’s life was my mum.
His second greatest love was sport.
He loved his home – the place they bought after they retired
But he loved travelling – all over the world they went, from Sidmouth to Sri Lanka
He came to life when with his granddaughter who he adored
He also came to life around custard slices and enjoyed afternoon tea
He was a historian, particularly the first and Second World War. He had taught history as well as PE during his teaching career
He loved his cats. And dozing with his cats.
And he loved music – brass bands were his favourite, but he had catholic taste.
In every picture I’ve just shared, my dad was living with Alzheimer’s. This film clip was taken about a month before he died.
I could have shown you pictures from earlier in his life, when he was a strapping young, English schoolboy-champion athlete, or at his wedding, or holding my or my sister’s hand when we were little – photos that without me saying it would say to you ‘in happier times’.
But so many of the happiest times in his life and our lives together happened after his diagnosis with Alzheimer’s.
His diagnosis was life changing certainly, but it was not life ending.
He did not die that day.
Yet so often this is the unspoken in the stories we tell of and hear about dementia. In particular, the constant slide into nostalgia, around music, images, life stories, as though our task is to remind the person and ourselves of who they once were and why they mattered, not of who they are and why they matter today.
In a powerful piece in the Irish Times on New Years Eve 2019, Prof Suzanne Cahill wrote:
“All too often we hear dementia referred to as the thief that steals the individual; the person is the “patient” or “sufferer”, a “shell of her former self”; the family caregiver is the “hidden victim” and the increase in the number of people with Alzheimer’s disease is a “rising tide/tsunami’.
Words are powerful and influence how we perceive and interact with people. These words do nothing to promote the agency, dignity and humanity of the individual who, no matter how severe their cognitive difficulties, is never gone and is still a recognisable human being that must be treated with dignity and respect.’
This displacement from ones own personhood and identity can start quickly.
Quite early on, and I think because he believed it might offer a cure, my dad decided to enrol on a trial to test a new treatment for Alzheimers. My mum and I accompanied him to some hard-to-find offices near Harley Street. I immediately sensed the impersonal nature of it all, and when the Director came to speak to us about it, and addressed herself to me and my mum, never making eye contact with my dad, our worst suspicions were confirmed.
I’m not going to pretend that it’s all plain sailing. I’m not sharing photos of the hard times. I love that clip of my dad dancing to Cotton Eyed Joe but 10 minutes earlier, trying to get him to try on shoes, I was struggling not to lose my temper, though it ended up with us both laughing.
The first 6 months of last year almost tipped my mum over the edge, trying to support my dad to be at home during the first lockdowns. She succeeded, almost to the very end, but at huge cost to her wellbeing. But they often would break the tension by falling about laughing together at the situation too.
And of course all that I can talk about and represent is my account of my dad’s outer world during this time – not his own inner world, or how my mum, or my sister or his friends encountered him. Nevertheless, while dementia changed things about my dad and about what he could do, for those of us that knew him well, it didn’t change who he fundamentally was.
But that’s because who we are is not something over which we have complete control. Translated, the South African philosophy of Ubuntu means ‘I am human because you are human’. My dad was my dad because I am his son. My mum his wife, because he was her husband. Our identities are formed, affirmed and reaffirmed through our relationships with others and with the world around us. Today I am only the author because you are reading.
As Hilde Lindeman argued in her beautiful essay ‘Holding one another in a time of dementia’:
“….an identity is a representation of a self. It consists of a tissue of stories, constructed from not only first person but also many third-person perspectives, depicting the more important acts, experiences, relationships, and commitments that characterize a person and so allows that person and those around him to make sense of who he is. Because we change over time, some stories in the narrative tissue cease to depict us faithfully and fade into the background, to be replaced with newer narratives that represent us more accurately.”
She explains that ‘Our identities matter morally because they function as counters in our social transactions, in that they convey understandings of both what we are expected to do and how others may or must treat us’
And she goes onto say that:
“It’s not only other people who hold us in our identities. Familiar places and things, beloved objects, pets, cherished rituals, one’s own bed or favorite shirt, can and do help us to maintain our sense of self. And it is no accident that much of this kind of holding goes on in the place where our families are: at home. ‘‘The home,’’ observes Iris Marion Young, ‘‘is an extension of and mirror for the living body in its everyday activity,’’ and thus is ‘‘the materialization of identity’’ (Young 1997, 150). Our homes manifest who we are at the same time as they provide the physical scaffolding that supports who we are. They are the solidly familiar axes around which our changing world revolves.”
In my own writing about this, inspired by Hilde’s piece, I’ve used the metaphor of an anchor – of how these various things anchor us in the world and in our own selves. They reaffirm our identity and are what provide us with meaning, purpose and a sense of belonging. And that anchor can be pulled up, allowing us to drift away before our time, if we fail to respect and sustain them.
I believe that’s what happened to my dad and it’s why he died when he did.
Lockdown upended all of our lives, breaking connections, disrupting routines and rituals, stopping us from being in the places or doing the things from which we derive meaning and purpose and identity. For people living with dementia, whether in the community or in institutional care it has proved catastrophic. Anecdotal evidence is now confirmed by academic research on the impact of isolation on people living with dementia. The Long Term Care Covid project had already begun to include mortality rates of people with dementia that had died not with Covid-19 but because of the impact of the restrictions on their health and wellbeing.
Covid-19 did not kill my dad. But he died because of it. He had food, shelter, could get washed and dressed, support with medication – all the things to keep him alive. But lockdown unravelled the life that provided him with his identity and sense of self – his reasons to be alive.
He didn’t see his granddaughter. Didn’t eat custard slices. Didn’t go to watch rugby or see the friends he watched rugby with. Didn’t go for walk. Didn’t go on holiday or day trips. Couldn’t chat to neighbours.
Unable to really understand why, he came to see my mum and latterly me, as the ones depriving him of these things. And so he fought back by refusing his medication, to get dressed, to have a wash. He rejected the support we brought in from a homecare agency, not least because the careworkers did not respect his identity and agency. On their first full day, they ignored my mum’s request that my dad get dressed himself with their supervision and support should he need it and just went ahead and did it. As challenging and inconvenient as all this was for us, in reflection I think he was protecting the one thing he could protect: his autonomy and sense of self.
And then he ended up in hospital, for 9 avoidable days. And it finished him off altogether. After being briefly discharged to a care home, my dad became ill and returned to hospital where he died on 12 September 2020. As I said earlier, his death certificate lists Alzheimer’s as the cause of death. What actually killed him was kidney injury, most likely caused by severe dehydration. The factors which lay behind his becoming so dehydrated are unclear, but I worry that in having attributed his death directly and solely to the condition of Alzheimer’s itself, we have no incentive to look at the extrinsic factors that may have influenced his willingness to eat or drink, or at the quality of care.
With respect to people with learning disabilities we have coined the phrase ‘diagnostic overshadowing’ to describe situations when a health professional makes the assumption that a person with learning disabilities’ behaviour is a part of their disability without exploring other factors such as biological determinants. Might the exact same thing be happening with respect to people with dementia? And not only overlooking other biological determinants, but the extrinsic factors shaping a person’s wellbeing too?
Of course, none of what I am saying or observing is new – Tom Kitwood set it out almost 30 years ago in Dementia Reconsidered. To support people to live as well as possible, we must start with their personhood and identity and that, as Hilde Lindeman says, is rooted not just within us, but in the world we inhabit.
And as she concludes her essay:
“If the familiar places and objects of home importantly hold us, it is better for us, all things being equal, to stay in our homes as long as we possibly can. However, when home care for people with progressive dementia is left almost entirely to family members, the familial capacity for care may be exhausted well before the benefits to the demented person of living at home have come to an end.”
Which brings me to the vision and approach for the future of social care promoted by social care future. This vision was co-created by members of our movement, including people living with dementia, and tested extensively on public audiences. But I led the drafting of it and my parents experience of dementia was at the forefront of my mind as I did so.
Echoing Hilde Lindeman, it begins by offering a North Star:
‘We all want to live in the place we call home, with the people and things that we love, in communities where we look out for one another, doing what matters to us’
But we won’t achieve this based on how we organise social care today. So we go on to say that:
‘When organised well, social care is about weaving a web of support and relationships in our local community that we can draw on to live the lives we want to, whatever our age or stage in life.’
That is to say, it is about respecting identity and personhood by focusing on the things that ‘hold us’ and on how to ensure they continue to hold us.
What does this mean in practice? I think there are already countless examples of innovative good practice that, if brought together could completely transform the way support is organised, moving away from institutional care and transactional time and task homecare, and in turn the quality of people’s lives.
When we centre on what matters to people, not what’s the matter with people.
Where we focus on strengthening, not on exploiting important relationships.
Where we see people as part of a warm wide web of community, and as important to other people in that community.
When we remember that people are loved.
And when we remember that the most important thing for a person isn’t the homecare worker putting a ready meal in the microwave, but sitting eating an enormous custard slice in Barton Grange Garden Centre.
And this is not just about health and social care systems and support. In common with the struggle for disability equality and inclusion more generally, it’s about removing barriers, changing social attitudes, reforming discriminatory policy and practice and making reasonable adjustments to open up society more generally and to secure everyone’s right to be in the world.
I want to finish with a real-life example that exemplifies what I’m talking about, and on something that hugely helped my dad and mum – the facilitation of a community circle
As my dad’s need for support increased, so they both found it harder to continue doing the things and going to the places together or separately that gave them both meaning and purpose.
My mum and dad’s family, friends and neighbours had indicated that they were there for them and would offer support and my mum had begun to reach for support. But she didn’t feel able to ask for that support to become routine sufficient that she could rely on it and plan her and my dad’s life accordingly, and there was hesitation on the part of friends and neighbours about what they should offer, both because they didn’t know what was needed and sometimes felt uncomfortable asking or suggesting.
So with the support of Helen Sanderson and Cath Barton from Community Circles we invited people around to my mum and dads, while my sister and I joined by Zoom. Helen facilitated, first inviting my mum to explain their situation and then friends and neighbours and ask questions and make suggestions. It was a very emotional meeting, not least because you could literally see the weight lifting from my mum’s shoulders first as she shared the challenges they faced and then as the others began to problem solve together and offer to do things to help. As a result, my dad was able to carry on going to watch the rugby, my mum was able to carry on going to choir, friends would come ‘round to see my dad so my mum could go to the shops. The people that ‘held them’ were invited to work out together how to hold them while they lived with dementia. And as a result they were better able to be in the place they called home, doing the things that didn’t just keep them alive, but which gave them reason to live.
Crucially, the family, friends and neighbours, in their coming together and reaffirmation of their relationships with my parents, were held by them. Take my dad’s friend, Simon, for example, with who my dad had journeyed all over the country to watch Leigh Centurions, who – for a little while longer at least – could continue to do so.
Sometimes though, it’s the power of an apparently simple gesture that really captures how different an approach is and the radically different values underpinning it.
When I first read the quotes I shared from Hilde Lindeman they were in an article by the now UN Special Rapporteur on disability rights, Professor Gerard Quinn, in which he summarised her argument as saying ‘home is the scaffolding of the self.’
So I will never ever forget how when she first met my parents, Helen Sanderson started by honouring their personhood and identity. The the very first words she said to them were:
‘Thank you for inviting me into your home’
Making rights make sense 
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