In March 2019 I went up to the North West to stay with my dad for a few days, so that my mum could have a few days with my sister in Scotland where she lives.
My dad’s Alzheimer’s had already begun to express itself quite markedly, especially with respect to being able to communicate, but also in accomplishing hitherto basic tasks like making himself a cup of tea and so on. But there was plenty he could still do and he remained interested and engaged in his one true love: sport.
On the Saturday we went to watch his beloved Sale Sharks. As we walked across the muddy, windswept car park underneath Barton Bridge I heard my dad muttering to himself. Thinking he was talking to me I asked him what he said and he replied ‘I was just saying to myself “oooo I’m at the Rugby”’. The rituals, the crowd, the smell, the cold wind, the game – he loved being there, something he’d rarely managed to do for a while, instead watching matches on TV.
On Monday afternoon we were due to meet my mum at Wigan train station, on her way back from Scotland and I would get on the train back to London, so we had much of the day to kill. I asked my dad what he’d like to do and he said ‘let’s go for a drive.’ I asked where and he replied ‘there’s a place north of Preston – it has stuff – let’s go there’. So we set off, along the M61, then off onto the A6, north of Preston. I asked a few more questions about our destination but got no nearer a clear answer. We took a turn off the A6, and got briefly lost. At this point I admit I had lost confidence so sent a text to my mum to ask for clues. While waiting for her reply we set off back up the A6 and just as my phone pinged with my mum’s reply on our left appeared the largest garden centre in Europe, Barton Grange. This surprised me as my dad has no real interest in gardening. Moreover we had about 4 hours before we needed to meet my mum. But I guessed the real reason we were there. A lot of garden centres in the North West of England pull in the punters because of their culinary offer above all else, and well….. into the café my dad headed, straight to the counter to order…. this enormous custard slice:
He had been very clear about our destination. And as soon as we’d finished we decided to leave, for a walk along the front at Lythm-St-Annes and fish and chips before heading back to Wigan.
Why am I telling this story? 18 months on and my mum and dad are taking their first steps into ‘service land’, drawing on some targeted support, and I find myself more and more involved in discussions about the future of care for people with dementia. I think the story of my and my dad’s weekend gets to the nub of what great support should be and do and to what is wrong with the way we support people with dementia today.
Fundamentally great support is about honouring and reaffirming personhood and identity and putting in place the conditions for human flourishing. That means understanding and attending to the things that hold our personhood and identity: family, friendships, place, the things we like to be and do or are known for. It means working out what matters to someone and where they want to get to in life, however challenging that might be. And it means going on adventures, even when the destination is unknown and focusing on possibilities rather than risks.
Ubuntu & the scaffolding of the self
In Western philosophy, public policy and law we have tended to take an individuated approach to personhood and autonomy, imagining each person as an island. Other cultures do not understand personhood and autonomy in this way. For example, the South African philosophy of Ubuntu tranlasted means ‘I am because we are’. Challenges have also come from the fields of gerontology, from feminism and from those advocating the rights of people with learning disabilities, advancing ideas of shared personhood and relational autonomy. For example, in ‘Holding One Another’, Hilde Lindeman talks of the ‘scaffolding of the self’ noting how ‘It’s not only other people who hold us in our identities. Familiar places and things, beloved object, pets, cherished rituals, one’s own bed or favourite shirt, can and do help us 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…is an extension and mirror of the living body in its everyday activity and is thus a materialization of identity…our homes manifest who we are at the same time as they provide the physical scaffolding that supports who we are.’ Our homes and what goes on within them is central to our personhood and identity. So are the things we do and the roles that we play. I was told recently of a friend’s auntie, who has been an active member of her church community, helping to run a community café. When she developed dementia, her friends with who she worked adapted things so that she could continue to be part of the team (until the council began funding it and risk assessed her out). I was reminded of this story reading a quote from Cormac Russell’s new book ‘Rekindling Democracy’, where he muses that ‘if empathy were the driver in food banks, we would not be able to tell the difference between the helpers and those receiving help.’ It also reminded me of this quote by Eduardo Galeano ‘I don’t believe in charity. I believe in solidarity. Charity is so vertical. It goes from the top to the bottom. Solidarity is horizontal. It respects the other person.”
Moreover, looked at this way, honouring the personhood and identity of one person, can only be achieved if we honour the personhood and identity of those with who they share their lives. This means recognising my mum in her own right, as my dad’s wife and our mum, and not simply as my dad’s carer. To dishonour her personhood and identity by recasting her as my dad’s carer is to dishonor my dad’s personhood and identity by recasting him as the ‘cared-for’ no longer her husband and our dad. The Swedes have a name for this – authentic love – and it underpins their welfare state, aiming to ensure people are not forced into relationships of dependency against their will
Sparking the will
The question of ‘scaffolding’ also pertains to the exercise of autonomy, and the possibility that people’s will and agency can be dialled up and down, despite the onset of dementia, for reasons related to their social context. I think we are hard-wired to seek control over our own day-to-day lives. When rendered an object, or left with a sense of limited power, we sometimes strive to exercise that control by withholding cooperation or through little acts of defiance or protest. These can in turn be misperceived as an absence of rationality or capacity and cited to justify further incursions into our agency and power by others in the name of ‘care’. This is because authorship of our own lives is core to establishing and maintaining our identity and our sense of self worth. I was first struck by this when watching ‘The toddlers who took on dementia’ on BBC 3 a year or two ago. Several pre-schoolers spent a week hanging out with adults with dementia in a day centre, matched by their interests. By the end of the week, the psychologists noted how the adults had, to the best they could, reasserted their adult responsibilities. Remarkably, one woman, who had not uttered a word while at the day centre for 3 years, spoke fluently to the children, giving them adult advice. The psychologists assigned the results to it being children. I couldn’t help but wonder whether it was equally down to not spending so much time only with other people with dementia and feeling the object of professional ‘carers’.
If this all sounds a bit academic, think about your own experience of the first 6 months of 2020. Lockdown has deprived all of us of the things that create ‘the scaffolding’ – we’ve had to live with limitations on our freedoms, unable to be with people we care about, do things that matter to us when we want to do them, make plans for the future, or be in control of our lives. Without those things we can all lose a sense of who we are or who we are going to be. We struggle to exercise agency when we become accustomed to not being able to. Autonomy is a muscle we learn to flex, and when not used, muscle memory is lost.
We know the horrifying toll of Covid19 on people with dementia in care homes in terms of the numbers who have died as a direct result of the virus. But the impact of lockdown measures on the health and wellbeing of people with dementia in care homes and in their own homes is likely to be enormous because of isolation and disconnection from other residents and family, disruption of routines, not being able to be and do things that give meaning and purpose. Many will have endured huge distress and suffered delirium. Many will I imagine have been heavily medicated. This is because people’s identity and personhood has not been held. The scaffolding has been dismantled.
Escaping the invisible asylum
To these ends, we tend to think of institutions and institutionalisation as about being in a place. But institutionalisation is really about the dismantling of the self, through the dismantling of its scaffolding: not respecting or upholding routines and rituals, familiar people and things, one’s own bed, the clothes one wears, the food one eats, the places one can go, the television one watches or the music one listens to. This may be more likely in congregate care facilities, but it can also happen out side of them where risk averse policy and practice, or life and limb care pays no attention to personhood, identity and autonomy. That our response to dementia, characterised as a disease that is robbing the person of their personhood and identity, should be dismantle the very scaffolding that holds it together seems perverse at best, downright abusive at worse. Well-intentioned ‘reminiscence’ focused measures, such as decorating hospital wards with décor from a bygone age, or playing old films and music also risk displacing personhood and identity unless they are highly specific to and of value to the person in question.
Valuable, not vulnerable
This displacement of the person from their own life is manifest in discourse concerning dementia. As Professor Suzanne Cahill has noted:
‘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.’
Language that displaces personhood and identity softens things up for violating human rights and I think underpins a culture of complacency about the lives of people living with dementia today with an over focus on finding a cure for tomorrow.
People with dementia have a right to be in the world.
Towards truly personalised care and support
Truly personalised care is then rooted in human rights. Its starting point is to honour personhood and to put in place the conditions for human flourishing. It aims to spark the will and to nurture agency. It deeply understands, respects and strives to sustain the ’scaffolding of the self’. That includes respecting and protecting important relationships and the identity and personhood of other important people, not disfiguring them by reassigning people as ‘carers’ and it means paying attention to the place the person calls home, how they live their live, to what they choose to be and do and to the roles they occupy and the breadth of their relationships. It means focusing relentlessly on what matters to people. It means people living with dementia can, despite their condition, flourish and maintain control over their own life. And it comes with a narrative that celebrates the person who is, not one that mourns the person who was.
Crucially, it means going on adventures, even when – or perhaps especially when – a custard slice is all that’s waiting at the end of the rainbow.