Radically Rethinking Dementia Care: Life-changing, not life-ending by Liz Bell

Through years of community arts and creative writing practice, I’ve been lucky enough to meet many people whose everyday reality has been changed and shaped by dementia.

Image credit: Gerald Bishop

While each one of them has been unique, they have all been introduced to me consistently as ‘the cared-for’ – whether it is in a residential, community, or clinical setting.

As readers of Asylum will know, being ‘cared for’ involves a deeply ingrained power dynamic that can make it difficult for the person on the receiving end of care to retain agency and autonomy. Today – thanks to decades of determined campaigning by disability rights activists, scholars, and advocates – mechanisms have been put in place to mitigate these power imbalances in many areas of health and social care (some more effective than others).

However, when it comes to dementia we are still far behind. Most academic research focuses not on how to live well with dementia, but on identifying its genetic causes. Technology is created and adapted not to support those with dementia to live in the places and ways they choose, but to prevent deterioration of still ‘healthy’ brains. Medicines and treatments are developed not to help manage the physical and functional distress that can be associated with dementia, but to slow disease progression entirely – whatever the cost.

And through it all, the voices of the people whose views are most important are ignored. Almost without exception, the contemporary mainstream narrative about dementia is driven not by the people who are living with dementia, but by those who care for them. In fact, the very idea of someone with dementia being entitled, as well as able, to think, speak, and act for themselves is, in many cases, considered dangerously radical.

Dementia as neurodivergence

As a neurodivergent person who is frequently baffled and frustrated by neuronormative expectations around memory, attention, and communication, I enjoy the company of people living with dementia. We strip away the small talk and the social niceties and find other ways to connect – through the movement of hands; the patterns of light on the floor; thoughts and memories all jumbled up like a joyful box of buttons you can rummage through side by side.

While the companionable joy of interacting with other people who see and experience the world in a non-typical way is something that a lot of neurodivergent people can relate to, the idea that dementia is itself a form of neurodivergence is often met with resistance. This resistance usually stems from a misunderstanding of neurodivergence being limited to diagnostic categories such as autism and/or ADHD.

Image credit: Gerald Bishop

But the concept of neurodiversity, as it was originally proposed by autistic activists in the early 1990s, was never meant to be restricted to a few specific conditions and differences. Anyone who perceives, interprets, or interacts with the world in a way that is different from what is expected within the dominant social and cultural environment can be described as neurodivergent – or as activist Kassiane Asasumasu, who first coined the term, has so emphatically explained: ‘it is not another damn tool of exclusion’.

When we accept that dementia is neurodivergence, we can appreciate more clearly the power involved in shaping the narrative around it. Time and time again, conflicts arise between neurodivergent self-advocates and those whose experience of neurodivergence is limited to their role as carers – and, while the expertise of family and professionals can be incredibly valuable, it is not the same as having direct experience.

The arguments used against self-advocacy when it comes to dementia are typically the same as the arguments used against other neurodivergent self-advocates: ‘If you’re capable of talking about it, you can’t speak for those more profoundly affected’; ’You don’t understand that if they need 24/7 support, then they can’t self-advocate’; ‘I know them better than anyone, and I know self-advocacy is not what they want or need’.

All these arguments assume the existence of an arbitrary point at which someone who is being cared for can legitimately be denied agency and autonomy. But what is that point? And who decides when it is reached? Why should someone with advanced dementia be denied the opportunity for self-determination, any more than a non-verbal autistic person or someone with a learning disability? Requiring high levels of care and support should never mean relinquishing our fundamental human rights and freedoms.

Nothing about us without us

Dementia self-advocacy may still be in its infancy, but it does exist. Over the past decade, local grassroots groups have begun to join forces through the Dementia Engagement and Empowerment Project, or DEEP network. As a user-led, rights-based advocacy network, DEEP encourages people with dementia to identify and speak out about the issues that are important to them – rather than simply being ‘consulted’ about the issues that are important to others.

This is radically different to the approach taken by many dementia advocacy organisations which tend to focus on creating more ‘dementia-friendly’ public environments through top-down ‘awareness-raising’ campaigns and training or accreditation services. While these kinds of initiatives are usually well-meaning, they can end up perpetuating tokenism at the expense of meaningful neuro-inclusion. This ultimately limits the possibility of radical changes that are required to challenge and deconstruct existing power inequalities.

Like so many other neurodivergent communities, people with dementia are beginning to find their collective voice. As more and more local groups come together through the DEEP network to organise and campaign for national change, organisations like Deepness, Dementia Media and Innovations in Dementia are bringing the perspectives of people with dementia into public consciousness through broadcasting, podcasting, and publishing.

Moving towards a more neurodiversity-informed model of dementia care and support is possible, but it requires carers and professionals to listen – not just consult, but really listen – to those with first-hand experience of dementia. This means challenging our own and others’ preconceptions about whose voices matter most. It means exploring and learning new and different ways of communicating with people, including those who are non-verbal. And it means focusing not only on what someone has lost, or what they can no longer do, but on finding and facilitating new ways for them to exercise their agency and autonomy.

The people I have met whose lives have been shaped by dementia have taught me so much about what it means to imagine, create, and share meaning through art, stories, and play. If we want to create a more neuro-inclusive world, we need to recognise that cognition is not the same as humanity – and that caring for someone with dementia means not only helping them to survive, but also collectively nurturing the parts of each other that make us human.

Liz Bell (she/her) is a neurodivergent writer and artist living in the Forest of Dean in the UK. In 2022, she set up The ZIG/ZAG Project to encourage curiosity, creativity, and connection about neurodiversity: www.zigzagproject.uk

Drawings by Gerald Bishop. After a long career as a professional writer, Gerald experienced a stroke that profoundly impact on his ability to communicate through written and spoken words. This, combined with his subsequent diagnosis with dementia, inspired Gerald to take up a regular drawing practice to reflect on and communicate his thoughts, feelings, and ideas.

This is a Sample Article from the Winter 2023 issue of Asylum [30:4].  To read more . . .  Subscribe to Asylum Magazine.