In March 2022, Linda Steele was invited by Dementia Reframed to launch a new book called ‘Behind Closed Doors'. In this blog post, Linda shares an abridged version of her launch speech, and situates this important book in the broader context of human rights for people with dementia.
Sarah Wallace’s book, ‘Behind Closed Doors’ offers a rich and critical account of Sarah’s journey through the health and aged care systems with her husband, Bob, following his diagnosis with Lewy Body Dementia.
In the lead up to, and four months following Bob’s diagnosis, Sarah cared for her husband in their home. She was well-positioned to do this with decades of aged care nursing experience. She had the personal drive after 50+ years of marriage, and she also had the support of her children.
Unfortunately, Sarah and Bob were not supported by the health and aged care systems to continue this arrangement at home. During a two-week stay at a dementia specific facility, Bob was medicated in a way that negatively affected the remaining 2.5 years of his life.
His time thereafter was spent moving between hospitals, mental health facilities and dementia care units where he was subjected to forced medication, chemical and physical restraint, detention, social isolation, and neglect in personal and medical care.
Sarah literally takes us behind the closed doors of the various institutions where Bob was detained, places many of us will never tread, and which are rarely featured in any depth in mainstream media. She details specific conversations and actions of staff and makes careful observations of the design and management of various settings.
Sarah’s account demonstrates how violence, abuse and neglect of people living with dementia occurs slowly over time. It gradually and insidiously unfolds in day-to-day routine care provision and the seemingly therapeutic and benevolent decisions and actions of those working in the system.
Sarah was a constant advocate for Bob throughout his time in health and aged care institutions. She sought to offer to treating doctors and staff insights into Bob’s circumstances, but she found the entire system, including individual medical professionals and staff, apathetic towards Bob and was excluded from involvement in his care. Only in Bob’s final weeks, spent at a local aged care facility (Sarah’s former workplace), was he finally treated with kindness, respect and dignity.
‘Behind Closed Doors’ not only provides a rich documentation of Bob’s experiences. We see Sarah become an activist for transformation of how health and aged care systems treat people living with dementia.
I encourage you to read Sarah Wallace’s book, ‘Behind Closed Doors’, and embrace the collective responsibility of working with Sarah and other advocates to transform our systems of care, to give everyone irrespective of age or disability, a better life. Delivering redress in the aftermath of harms such as those documented by Sarah Wallace – which we are exploring in our project – is one part of a broader strategy towards justice and transformative change.
Denial of human rights
‘Behind Closed Doors’ provides many examples of human rights violations being perpetrated in a routinised and normalised way against people living with dementia, right now across Australia.
Bob was denied the right to personal integrity (freedom from interventions in his body) and the right to liberty (freedom from being locked up). He was denied the human rights to freedom from violence and freedom from torture and other cruel, inhuman and degrading treatment.
Being subjected to chemical restraint or to detention without consent amounts to violence – specifically, it is a form of legal violence that the government, the legal system, police and judges all allow to happen by reason of someone’s disability and the assumptions this is necessary, protective, and therapeutic. Moreover, this violence can even amount to torture when done for discriminatory reasons (eg because of Bob’s dementia) or for punitive means (eg to penalise Bob for not confirming to an institution’s rules about behaviour).
Bob was denied the right to freedom of expression. Sarah interprets Bob’s emotional states and physical actions as an understandable response to his medication, the environments he was in and emotional and medical neglect by staff, interpretations which were informed by her deep and empathic knowledge of her husband. However, medical professionals and health and aged care staff generally interpreted Bob’s behaviour as only ever associated with his dementia.
Bob was denied the right to health and the right to rehabilitation, and even the right to life. Dementia is assumed by some in the health system to cast people into a state of near death where no medical care or rehabilitation is necessary. I know other examples of this happening to people living with dementia, such as my colleague, Kate Swaffer, who was told by her diagnosing doctor to go home and sort out her affairs and basically prepare to die.
It is evident from Sarah’s book that Bob was also denied the right to participate in recreation as generally, the environments in which he was detained provided no stimulus. This resonated with my earlier research with colleagues Swaffer, Phillipson and Fleming where advocates and care partners have spoken to me of people being ‘parked’ in front of televisions or walked around and around in circles in small courtyards.
Bob was also denied the right to family. From the very first day of Bob’s institutionalisation, the system worked to erode and even destroy family bonds.
Bob was denied the right to equality and non-discrimination, and he was denied the right to dignity. As Sarah describes:
‘He was robbed of his dignity. Rather than being helped to lead as full a life as possible he was treated as a thing to be controlled.’
The sum of all these human rights violations shows Bob was treated differently, unfairly, and violently, because of his dementia. Much of what happened to Bob is incomprehensible for people without disability. In particular, the chemical restraint Bob was subjected to was made possible because of his disability – we might not like how some non-disabled people behave but we can’t just go and forcibly medicate them – but this is legally possible and socially acceptable when someone has a cognitive disability.
Disability Royal Commission
A current opportunity to achieve change for people living with dementia in Australia is via the Disability Royal Commission. The Commission was established in April 2019 in response to community concern about reports of violence against, and neglect, abuse and exploitation of, people with disability.
The Commission is seeking personal experiences of:
People with disability (including people living with dementia)
Family and carers who support people with disability
The wider community including health care professionals, educators, and others who provide services to people with disability.
The Commission will deliver a final report to the Australian Government in September 2023 with recommendations for improving laws, policies, structures and practices to ensure a more inclusive and just society. For more information about how to make a submission, read our recent blog post.