Reparations for Harm to
People Living with Dementia
in Residential Aged Care
EXECUTIVE SUMMARY
by Linda Steele and Kate Swaer
Funded by a Dementia Centre for Research Collaboration
Dementia Australia Research Foundation Pilot Grant
2 Executive Summary
About this document:
This document provides a summary of the Project Report of
the project ‘Redressing Abuse and Neglect of People Living
with Demena in Residenal Aged Care’ funded by a Demena
Centre for Research Collaboraon – Demena Australia Research
Foundaon Pilot Grant.
The document was authored by Linda Steele (ORCID ID: 0000-0001-
6944-7888) and Kate Swaer (ORCID ID: 0000-0001-8963-2431).
This anthology is distributed under the terms of the Creave
Commons Aribuon + Noncommercial + NoDerivaves 4.0 (CC-BY-
NC-ND) license. Copyright is retained by the authors.
Suggested citation:
Linda Steele and Kate Swaer, Reparaons for Harm to People
Living with Demena in Residenal Aged Care – Execuve Summary
(University of Technology Sydney, 2023)
Further information about the project:
Project Report: Linda Steele and Kate Swaer, Reparaons for Harm
to People Living with Demena in Residenal Aged Care – Project
Report (University of Technology Sydney, 2023).
Demena Reparaons Principles: Linda Steele and Kate Swaer,
Reparaons for Harm to People Living with Demena in Residenal
Aged Care – Demena Reparaons Principles (University of
Technology Sydney, 2023).
Project website and blog: Demena Jusce: Demena Redress
Project www.demenajusce.org.
Reparations for Harm to People Living with Dementia in Residential Aged Care 3
The starting point
When people living with demena are harmed in residenal aged
care their human rights are violated, and they must have equal
access to jusce and reparaons.
Background
There is a signicant and longstanding problem of harm to people
living with demena in Australian residenal aged care, along with
a failure to recognise, redress and repair the harm and hold people
accountable for this harm.
In 2019, there were an esmated 57.4 million people living with
demena globally, and it is esmated this will increase to 152.8
million in 2050.
1
There are an esmated 487,500 people living with demena in
Australia
2
and, without a medical breakthrough, this number is
expected to increase to almost 1.1 million by 2058. In Australia in
2020, demena was the second leading cause of death overall
3
and the leading cause of death in women (almost two-thirds of
people who died from demena were female).
4
It was reported that
many people with likely mild cognive impairment or some form of
demena living in residenal sengs also lack a formal diagnosis.
5
In Australia in 2021, more than 371,000 people were using
residenal aged care (permanent or respite, approximately
191,000), home care (approximately 176,000) or transion care
(approximately 3,700), two-thirds being women.
6
In 2021, there
were 830 providers delivering residenal aged care through
2,704 services.
7
People living with demena are harmed in Australian residenal
aged care. This harm is the result of various factors: instuonal
sengs of residenal aged care are coercive due to limited other
opons; physical and sexual assault; use of restricve pracces
(such as chemical and physical restraints); connement; non-
consensual medicaon; and neglect in personal care, medical care,
disability support and social parcipaon.
This harm is also the result of lack of access to community-based
support and housing, and living in residenal aged care – including
in segregated demena care units – out of necessity rather than
choice.
8
Although there has been limited formal reporng – for
example, to the police or the courts – of harm to people living
with demena in residenal aged care,
9
mulple formal inquiries
and the Royal Commission into Aged Care Quality and Safety has
reported that the incidence of violence, abuse and neglect of
people living with demena in Australian residenal care facilies is
a signicant and persistent problem.
4 Executive Summary
Some key facts and gures related to residenal aged care are:
• 39.2% of people living in Australian aged care facilies
experience elder abuse in the form of neglect, emoonal abuse
or physical abuse; the most prevalent were esmated to be
neglect (30.8% of people), emoonal abuse (22.6%) and physical
abuse (5%).
10
• The number of alleged incidents of unlawful sexual contact in
2018–19 was esmated to be as high as 2,520, or almost 50 per
week;
11
in the last quarter of 2021, 530 incidents of unlawful
sexual conduct or inappropriate sexual contact were reported,
or a rate of around 44 per week.
12
• Levels of poor nutrion and low hydraon are high.
13
• Some people’s deaths in residenal aged care involve high-risk
medicaons.
14
• There is reporng of inappropriate use of anpsychoc agents,
especially regarding inial dose and excessive duraon of
treatment.
15
Addionally, there is widespread overprescripon
of anpsychocs for people living with demena in residenal
care, despite major Australian studies conrming that ‘by using a
mul-strategic and muldisciplinary approach to deprescribing,
anpsychocs can be tapered and ceased’.
16
• There are long waing periods for access to home care – more
than 50,000 older Australians have died while waing for home
care since 2017–18.
17
The impacts of this harm on people living with demena are
diverse and wide-ranging. People living with demena can
experience physical and psychological injury, trauma, increased
disability and greater need for support, and even death. Families
and care partners can experience moral injury and ongoing loss,
guilt, betrayal of trust, trauma and anger about the harm to
the individual living with demena. Trauma and anger are oen
exacerbated by a lack of closure due to internal and external
complaint processes that are ill-adjusted to their needs and do not
deliver any validaon, accountability or change.
18
The harm to people living with demena in residenal aged care is
a systemic and structural problem. It is facilitated by environmental
factors (including geography and architecture), economic, legal
and regulatory frameworks, and the operaon of residenal aged
care.
19
Exisng jusce, regulatory and polical systems have failed
to recognise, redress or repair the harm, to hold perpetrators
accountable and to ensure transformave systemic and structural
change to prevent harm from connuing.
The Royal Commission into Aged Care Quality and Safety, which
drew aenon to harm to people living with demena in residenal
aged care,
20
is just the latest of numerous inquiries over the past
two decades to idenfy problems with residenal aged care.
21
Reparations for Harm to People Living with Dementia in Residential Aged Care 5
Incredibly and regreably, none of these inquiries has
recommended a process for recognising, redressing and repairing
this harm. Indeed, rather than enhancing accountability of
residenal aged care providers, in the aermath of the Royal
Commission into Aged Care Quality and Safety the Australian
Government instead legislated to provide immunity to residenal
aged care providers from civil and criminal liability in relaon to the
use of restricve pracces in certain circumstances.
22
We have a current situaon in which the Australian Government,
residenal aged care providers, and the sta, board members and
legal and health professionals who work within this system are
largely unaccountable to people living with demena, their families
and care partners, and broader society.
This harm to people living with demena violates their human
rights under internaonal instruments such as the Internaonal
Covenant on Civil and Polical Rights and the Convenon Against
Torture. As people living with demena are people with disability
(nong that the World Health Organizaon has recognised
demena as a major cause of disability for well over a decade), the
harm also violates rights under the Convenon on the Rights of
Persons with Disabilies. Specic human rights violaons include
violaons of rights to:
• freedom from violence and torture
• liberty
• personal integrity
• health
• rehabilitaon
• legal capacity
• independent living, and
• equality.
23
The UN Declaraon on the Rights of Indigenous People provides
that Indigenous People have rights to self-determinaon, pracce
cultural tradions and not to be forcibly removed from their lands,
all of which can be violated in relaon to First Naons people living
with demena who are compelled to live in residenal aged care.
The UN Guiding Principles on Business and Human Rights provide a
framework for residenal aged care providers to see themselves as
actors in realisaon of human rights and for governments to hold
residenal aged care providers accountable as a maer of public
procurement when they fail to meet these expectaons.
The failure to deliver recognion, redress, repair and accountability
to people living with demena in the wake of this known harm
violates their rights to equality and non-discriminaon and to
equal access to jusce. People living with demena, and their care
partners and family members, encounter barriers to accessing civil
jusce through the courts, barriers to reporng harm to the police
and ineecve complaint and prosecutorial processes.
24
6 Executive Summary
Moreover, people living with demena have been treated unequally
in relaon to specialised redress; there is no redress scheme for
people living with demena who are harmed in residenal aged
care, in stark contrast to recommendaons and ocial responses to
similarly widespread harm in other Australian instuonal contexts.
For example, the Naonal Redress Scheme for survivors of
instuonal child sexual abuse was introduced by the Australian
Government in 2018 following the Royal Commission into
Instuonal Responses to Child Sexual Abuse.
25
Over the past
decade Australian state and territory governments have introduced
reparaons schemes for members of the Stolen Generaons and
their surviving family members.
26
Addional to recognion and delivery of redress to individuals,
there is also a need for ‘moral repair’ at the collecve level of
society at large. ‘Moral repair’ refers to society confronng its
harmful history and present, to take responsibility for that harm
and to undertake to restore hope and trust.
27
Internaonal human rights norms provide for reparaons for
gross human rights violaons.
28
While aged care might not be
convenonally understood as a site of gross violaons of human
rights, we argue that ‘the paradigm shi brought about by the
CRPD in terms of how human rights of people with disabilies are
understood necessitates a ‘disabling’ of how the [internaonal
guidance on reparaons is] interpreted and applied’ in order to
extend to specic experiences of people with disability, including
people living with demena.
29
Reparaons can take mulple and diverse forms, including
compensaon, rehabilitaon, apologies, truth-telling and legal
reform.
30
Reparaons can be a material and praccal contribuon
to healing individuals, repairing damaged moral and social
relaons, holding perpetrators accountable and transforming
systems. Reparaons are not dependent on the unlawfulness of a
perpetrator’s conduct, nor are they dependent on what remedies
can be delivered by a court.
31
Reparaons have similaries to the Naonal Redress Scheme and
Stolen Generaons reparaons schemes, which focus on individual
reparaons in the form of monetary payments, counselling and
individual apologies, but can oer a broader range of opons,
including those that operate at a collecve and structural level.
To date, reparaons have not been implemented or even explored
in relaon to people living with demena in residenal aged care.
However, there is emerging internaonal human rights commentary
and academic scholarship on reparaons in the broader context of
people with disability.
32
There are some examples of reparaons
being used in overseas countries in response to sterilisaon of
people with disability.
33
Claims have been made in Australia by
people living with psychosocial disabilies who have used mental
health services, as well as their families, carers and supporters
in some instances.
34
These developments provide a compelling
basis for extending reparaons to people living with demena as a
specic group of people with disability.
Reparations for Harm to People Living with Dementia in Residential Aged Care 7
There is a dearth of exisng research and pracce on reparaons in
relaon to people living with demena and in the specic context
residenal aged care.
Project Aim
The aim of the project was to develop an evidence-base on the
necessity, scope, forms and processes of reparaons for harm to
people living with demena in residenal aged care in order to
support realisaon of their human rights, parcularly the right to
equal access to jusce and reparaons.
We sought to contribute to Australian policy and law reform
discussions around residenal aged care, access to jusce and
human rights for people living with demena; raise awareness
amongst policy-makers, lawyers, advocates, and human rights
praconers about the need for acon on reparaons for
people living with demena; and iniate an internaonal eld of
scholarship and advocacy on reparaons for people living with
demena who have been harmed.
Project team and advisors
The project was led by chief invesgator Associate Professor Linda
Steele. Kate Swaer was an associate invesgator on the project. Dr
Evelyn Rose and Hope Siciliano provided research assistance.
The project was supported at all stages by the project
organisaonal partners Demena Alliance Internaonal and People
with Disability Australia and by the Project Advisory Group of
people living with demena, family members and care partners,
disability and demena rights advocates and lawyers, and social
jusce lawyers:
• Cheryl Day (Demena Alliance Internaonal)
• Lyn Rogers (Demena Alliance Internaonal)
• Barbara Spriggs (care partner)
• Francis Quan Farrant, Giancarlo de Vera and Karen Kobier
(People with Disability Australia)
• David Skidmore (Mulcultural Disability Advocacy Associaon)
• Sam Edmonds (Older Persons Advocacy Network)
• Bill Mitchell (Townsville Community Law)
• Dr Emma Phillips and Sophie Wiggans (Queensland Advocacy for
Inclusion), and
• Ariane Dozer (Naonal Jusce Project).
8 Executive Summary
Project methods
The project ulised a disability human rights methodology. This
methodology involves research directed towards emancipaon
rather than marginalisaon of people living with demena and
priorising people living with demena as leaders and parcipants
in the research.
35
The dearth of exisng research and pracce on reparaons for
harm to people living with demena in residenal aged care
provided the research team with a unique opportunity to develop
a foundaonal conceptual and empirical knowledge-base on the
topic driven by the perspecves of people living with demena
and people who are close to and advocate with them. Thus, the
primary research method was qualitave research with people
living with demena (who do not necessarily live in residenal aged
care or have not had personal experience of harm), care partners
and family members of people living with demena who have been
harmed in residenal aged care, volunteer advocates (individuals
who, in an unpaid capacity, advocate improved rights and quality
of life for people living with demena and who generally have had
experience as care partners or family members of people living with
demena), and lawyers and advocates (individuals working in a paid
capacity in legal and advocacy organisaons supporng disability
rights, older people’s rights or human rights more broadly). While
priority was given to parcipaon of people living with demena
in data collecon, care partners and family members, and lawyers
and advocates were also invited to parcipate based on their
involvement in witnessing and advocang against the harm to
people living with demena, including individuals living with
demena who have since died.
The project was conducted July 2021 – December 2022 and
involved four stages.
Reparations for Harm to People Living with Dementia in Residential Aged Care 9
Stage One involved gathering an evidence-base for developing the
Demena Reparaons Principles. Following extensive recruitment
eorts, our nal sample of research parcipants in focus groups
consisted of: people living with demena (n=6), care partners and
family members (n=13), volunteer advocates (n=8) and advocates
and lawyers (n=11).
Overall, this was consistent with our targets, with the excepon of
low numbers of people living with demena who parcipated. One
diculty recruing people living with demena is that the topic
was not considered personally relevant to people we approached
(e.g., they did not live in residenal aged care, they did not have
experience of harm, or it was too confronng due to the reality
they may be facing the prospect of being in residenal care in
the future), even though such personal experience was not a
requirement for parcipaon.
These focus groups explored research parcipants’ views on the
necessity for reparaons in response to harm to people living
with demena in residenal aged care, and the forms of and
processes for these reparaons. Data from the focus groups were
then themacally analysed. Research at this stage also involved
analysis of internaonal human rights norms on access to jusce
and reparaons and analysis of the design and lived experiences of
other Australian redress schemes.
Stage Two involved development of dra ‘Demena Reparaons
Principles’. These principles were primarily informed by the ndings
from the focus groups.
The principles were also informed by internaonal human rights
norms on access to jusce and reparaons and the design and lived
experiences of other Australian redress schemes.
STAGE
1
STAGE
2
10 Executive Summary
Stage Three involved workshopping the dra Demena Reparaons
Principles. A series of stakeholder roundtables explored research
parcipants’ views on the content and wording of each specic
dra principle and idened gaps in the scope of the dra
principles. Following extensive recruitment eorts, our nal sample
of research parcipants in stakeholder roundtables consisted
of: people living with demena (n=10), care partners and family
members (n=11), volunteer advocates (n=9) and advocates and
lawyers (n=11).
Overall, this was consistent with our targets. The notable increase
in parcipaon by people living with demena compared to the
Stage One focus groups may have been due to the stakeholder
roundtables concentrang on a policy document rather than more
abstract discussion of a topic perhaps perceived as removed from
personal experience.
Data from the stakeholder roundtables were then themacally
analysed. Feedback on the dra principles was also received at
two meengs with the project advisory group – one before and
one aer the stakeholder roundtables. We also received feedback
from internaonal human rights experts: Professor Gerard Quinn,
Bethany Brown and Bill Mitchell.
Stage Four involved the producon of a nal set of Demena
Reparaons Principles through revision of the dra and inseron
of addional principles. This stage was informed by the ndings
from the stakeholder roundtables and feedback from the project
advisory group.
Limitations of the project
It is important to acknowledge three limitaons of the project:
• First, the focus group and stakeholder roundtable sample sizes
were small. It is vital to connue to priorise parcipaon of
people living with demena in further empirical research on
reparaons.
• Second, the project focused on the foundaons and bigger
picture of reparaons and did not explore the ner level
of detail. It is important for future research to consider the
implementaon of reparaons and technical aspects of their
operaon in the Australian legal and service context.
• Third, there was insucient scope in the project to fully
explore interseconal issues, such as experiences of harm and
reparaons needs of specic communies of people living with
demena (e.g., women, First Naons people). It is vital for future
research to engage with specic communies.
STAGE
4
STAGE
3
Reparations for Harm to People Living with Dementia in Residential Aged Care 11
Project ndings
There are four key interrelated concepts (which also form the
tle of our report) that drive the approach to reparaons in
the Demena Reparaons Principles. These four concepts are
Recognion, Accountability, Change, Now.
Recognition
‘[T]he only type of redress that would be meaningful for me
would be the costs of moving me to a safe place, where that
was not going to happen again. That’s meaningful for me …
it’s about this restorave jusce, restoring someone to a state
comparable to what they had before … I just want to be gone
from where it happened because otherwise you’re just living in
a trigger point.’ (Person living with demena, PLWD09)
‘It is about feeling that you have been heard, you have been
listened to and there is change.’ (Volunteer advocate, VA08)
‘[R]edress makes you look at what happened in the past,
because without knowing your past, everything that you’re
doing now is not based on concrete acceptance, that what
was done in the past shouldn’t be repeated. You really need to
acknowledge the wrongs before you move forward. I think that
is important. I think that’s the importance of redress, because
it forces people to be accountable, to hear what went wrong,
how it impacted the people and therefore, implicit in that is we
won’t do it again.’ (Advocate and lawyer, AL02)
Recognising the harm to people living with demena in residenal
aged care and the wide-ranging and ongoing impacts of this harm
on people living with demena and their family members and care
partners is important for three reasons. First, people living with
demena are devalued and are oen not believed. A second reason
is that family members and care partners who seek to advocate
against this harm are posioned as problemac and disrupve and
are silenced, and the failure to validate the ongoing impacts on
them of their feelings of grief, loss and anger relang to the harm
to individuals living with demena conrms that the lives of people
living with demena do not maer. Finally, exisng jusce, polical
and regulatory processes have failed to acknowledge and provide
people living with demena, family members and care partners
with the material resources and supports needed to address
these impacts. Recognion sends the message that the harm is
wrong and that the lives of people living with demena maer.
Recognion must be reected in forms of reparaons that provide
opportunies for public acknowledgement of, learning about
and acon in response to the harm and its impacts. Recognion
must also be reected in reparaons processes that centre the
experiences and voices of people living with demena and are
shaped by their individual circumstances and idenes.
12 Executive Summary
Accountability
‘So redress obviously has to deal with responsibility and nobody
in this system takes responsibility. No one. The doctors don’t.
The nurses don’t. The providers don’t. The government doesn’t.
The hospitals don’t. You can’t get redress when you have no
authoritave system. … So the idea of redress is going to be
rendered actually nonsensical in the system in which there is no
accountability.’ (Volunteer advocate, VA08)
‘I feel a great sense of despair aer spending over 90 million
[dollars] on the Aged Care Royal Commission, aer the last full
stop, the abuse connues, so what is the point really? People
have told their stories, mothers have cried, daughters have
cried and sll it happens today. Without that redress, without
people saying, ‘Everyone is responsible, now we’re going to pay
for it. We’re going to pay for it and have a naonal sorry day for
all the people who have been wronged’, it’s just going to carry
on.’ (Advocate and lawyer, AL02)
Holding accountable the individuals and organisaons who have
perpetrated harm to people living with demena in residenal
aged care is important for several reasons. First, exisng jusce,
regulatory and polical systems have failed to recognise the
wrongfulness – and, at mes, illegality – of perpetrators’ conduct.
A second reason is that perpetrators and other individuals and
organisaons have beneted – nancially or otherwise – from the
harm. Finally, the current absence of accountability legimates the
ongoing perpetraon of harm. Accountability must be reected in
forms of reparaons that reckon with and sancon wrongdoing,
require forgoing of nancial benet gained through the harm,
and ensure acon that will stop ongoing perpetraon of harm.
Accountability must also be reected in reparaons processes that
are safe, transparent and independent, and that hold individuals
and organisaons accountable for their role in reparaons.
Change
‘[O]ne of our greatest fears is that we’re going to end up in one
of these places and it’s sll going to be going on. It’s a prey
good likelihood of that happening and, for me, I just would like
to see everybody recognising that this isn’t just a few cases
here and there, that it’s fairly commonplace, that it has been
addressed, and will connue to be addressed and that moving
forward, there’s going to be greater awareness and much beer
treatment of us when we’re in those circumstances.’ (Person
living with demena, PLWD05)
‘I think all of the people I’ve spoken to in my advocacy journey,
the reason they are involved is because they don’t want what
happened to them to happen to other people. That is the
guiding thing. I don’t want anybody else to go through what my
parents went through. I think that is really crical.’ (Care partner
and family member, CPFM10)
Reparations for Harm to People Living with Dementia in Residential Aged Care 13
Ulmately, reparaons need to be directed towards bringing about
change at the structural and systemic level. While reparaons are
necessarily responding to what has happened in the past, this must
always be connected to prevenng future harm at the individual
and structural levels.
Again, there are several reasons for this. One is that reparaons,
if not followed up with meaningful acon, can be experienced
as empty words and people being ‘paid o’. A second reason
is that harm arises from the structural and systemic dynamics
of residenal aged care, and thus the condions for connued
perpetraon of harm need to be addressed. Finally, while the past
cannot be changed, it is crical the lessons of the past are used to
change the future.
Change must be reected in forms of reparaons that are directed
towards human rights-based changes to laws and pracces in
residenal aged care, and in each form of reparaons having
a clear connecon between past harm and changes to make a
beer future for people living with demena. Change must also be
reected in reparaons processes that include people living with
demena in leadership roles and monitoring and enforcement of
acon to stop ongoing perpetraon of harm.
Now
‘[T]he only type of redress that would be meaningful for me
would be the costs of moving me to a safe place, where that
was not going to happen again. That’s meaningful for me …
it’s about this restorave jusce, restoring someone to a state
comparable to what they had before … I just want to be gone
from where it happened because otherwise you’re just living in
a trigger point.’ (Person living with demena, PLWD09)
‘[T]he type of people that it aects, that it’s done in a mely
way, because if you want redress to somebody, like a person
living with demena that have been harmed, you need that
process to start really quickly. Depending on how advanced they
are or how fast they are advancing, we need to ensure that it
happens quickly.’ (Volunteer advocate, VA11)
Reparaons are urgently needed and should not be delayed. There
is sucient historical and current evidence both of widespread
harm to people living with demena and of its impacts on people
living with demena and care partners and family members, such
that further exploraon of the existence of harm is unnecessary.
Addionally, reparaons are already recognised in internaonal
human rights law and have been introduced in relaon to
widespread instuonal harm in other Australian contexts,
meaning there is an exisng normave framework and a wealth
of examples and experiences from which to draw. Finally, people
living with demena who have been harmed and are sll alive are
in urgent need of rehabilitaon and support; many who have been
harmed are older and there is a risk they will die before they can
access reparaons.
14 Executive Summary
Unique challenges
There are unique challenges to realising reparaons for harm
to people living with demena in residenal aged care. These
unique challenges include sgma, social death, paternalism
and therapeuc nihilism; care partners and family members as
perpetrators of or implicated in harm; a precarious and exploited
workforce; the prot context of residenal aged care; and the
ongoing nature of harm. These unique challenges are not idened
and addressed in the scholarship and pracce on reparaons, nor
are they reected in exisng Australian reparaons schemes for
widespread instuonal harm in other contexts. As such, they have
informed development of the Demena Reparaons Principles, and
must also be considered in any future use of these Principles.
The project report
The project report presents the Demena Reparaons Principles.
These principles are the primary outcome of the project ‘Redressing
Abuse and Neglect of People Living with Demena in Residenal
Aged Care’ (2021–2023), funded by Demena Australia Research
Foundaon.
The Demena Reparaons Principles apply to people living with
demena and their care partners and family members who are
impacted by harm to people living with demena in residenal
aged care.
This report is structured in ve secons:
• Secon 1 provides background to the project’s focus on
reparaons.
• Secon 2 provides an overview of the project’s aim and
methods.
• Secon 3 provides an overview of the project’s ndings by
reference to four key concepts: recognion, accountability,
change, now.
• Secon 4 explains the Demena Reparaons Principles by
primary reference to research parcipants’ perspecves, also
drawing on internaonal human rights norms and the design
and lived experiences of the Naonal Redress Scheme and
Stolen Generaons reparaons schemes.
• Secon 5 idenes next steps to advance the longer-term
program of work to realise reparaons for harm to people living
with demena in residenal aged care in Australian law and in
internaonal human rights pracce.
Reparations for Harm to People Living with Dementia in Residential Aged Care 15
Next steps
This project is a call to acon for governments to implement
reparaons. Addionally, this project is the rst step in a longer-
term program of work to realise the introducon of reparaons
for people living with demena in Australian law; recognion
of and acon on reparaons for people living with demena
in internaonal human rights pracce; and development of an
internaonal eld of scholarship on reparaons and demena. As a
rst step, the project provides a strong evidence-base for Australian
law reform, a framework for future development of policy and
pracce on reparaons, and novel empirical and conceptual
insights to guide future research on reparaons.
Broader relevance of the project
While the project focuses on reparaons for people living with
demena in Australia, the project report and Demena Reparaons
Principles are relevant to the many other naons where people
living with demena experience unredressed harm.
36
Although our project is specically focused on people living with
demena, as a parcularly marginalised group within aged care,
project report and Demena Reparaons Principles are relevant to
responding to harm to all residents in residenal aged care.
The Demena Reparaons Principles have possible ulity more
broadly within all instuonal sengs for people living with
demena, as well as people with disability and older persons more
generally.
The project report and Demena Reparaons Principles might also
apply more broadly to non-instuonal sengs such as home care
where service providers perpetrate similar harms in the private
home to those that occur in residenal aged care.
Ulmately, the project report and Demena Reparaons
Principles provide a conceptual framework and evidence-base
for developing reparave approaches in response to calls for a
fundamental reimagining of the future of aged care involving
deinstuonalisaon
37
and the growing recognion in United
Naons and internaonal human rights systems of the need for
equal access to jusce and remedies for people with disability and
older people.
38
Moreover, while the project is focused on reparaons for harm to
people living with demena in the specic context of residenal
aged care, some of the Demena Reparaons Principles (notably
those on process) will be relevant to the parcipaon of people
living with demena in other contexts of reparaons, including
contexts not specic to people living with demena (e.g.,
instuonal child abuse, post-conict, post-colonial). This is
parcularly the case given the absence of research on demena
and reparaons.
16 Executive Summary
Preamble
People living with demena in residenal aged care are harmed.
This harm has diverse and ongoing impacts on people living with
demena and their care partners and family members.
Governments and jusce and complaint systems are failing to
recognise, redress and repair the harm and hold people and
organisaons accountable for this harm.
Human rights provide for equal access to reparaons and jusce,
and people living with demena must enjoy these rights as much as
everyone else.
Therefore, reparaons must be grounded in, and recognise and
advance human rights of all people living with demena, nong
that people with disability have equal rights.
Public knowledge of truthful accounts of harm and of perpetrators
is central to holding them to account.
The necessary centring of the needs and perspecves of those who
have been impacted by harm must not result in ignoring who has
caused this harm.
Therefore, reparaons must be directed towards holding
all pares to account for harm, including governments and
residenal aged care providers.
Reparaons will be fule if they are not trying to stop current harm
and prevent future harm.
The past can’t be changed, but the past can inform how we change
for the future.
Therefore, reparaons must be directed towards stopping
and prevenng people living with demena being harmed in
residenal aged care, in a wider context of advancing equality and
dignity of people living with demena.
Many people living with demena and care partners and family
members who parcipated in the Royal Commission into Aged Care
Quality and Safety shared personal experiences at great personal
cost to them. It is important to recognise and honour these
experiences.
The Royal Commission into Aged Care Quality and Safety made
important recommendaons about how to improve the aged care
system, but omied to consider or recommend systems for redress
or reparaons.
The Australian Government must act and implement the
recommendaons of the Royal Commission into Aged Care Quality
and Safety.
Dementia Reparations Principles
Reparations for Harm to People Living with Dementia in Residential Aged Care 17
Reparaons are crical to prevent future harm in residenal aged
care, even though redress or reparaons were not menoned or
recommended by the Royal Commission into Aged Care Quality and
Safety. However, reparaons must not undermine everything that
was learned through the Royal Commission into Aged Care Quality
and Safety.
Therefore, reparaons must be informed by the experiences
of people living with demena and their families and care
partners shared at the Royal Commission into Aged Care Quality
and Safety, and support implementaon of the Commission’s
recommendaons.
People living with demena and their care partners and family
members experience physical, psychological, emoonal and
economic suering and mistrust of and anger towards the aged
care system, governments and health and legal professions.
Harm in residenal aged care has caused broken social and moral
relaons.
Reparaons must provide tangible repair for individuals, families
and society.
Therefore, reparaons must be an opportunity for healing and
moral repair.
People living with demena are oen excluded from involvement in
policy design and implementaon because they are considered to
lack capacity.
Co-design is one way to challenge paternalism and ableism
towards people living with demena and realise equality and self-
determinaon.
Co-design of reparaons enables direct involvement of people
living with demena and their care partners and family members
who have been impacted by harm in residenal aged care and
reects direct acon by governments to validate and respond to
their experiences.
Perpetrators must not be involved in the design or delivery of
reparaons.
Therefore, reparaons must be led by people living with demena
and co-designed by people living with demena and care partners
and family members, in all aspects of reparaons, and must not
be led or inuenced by those involved in perpetrang harm.
18 Executive Summary
Principles
Each principle is presented in bold, followed by a series of bullet points elaborang on the reasons for
and operaon of each principle.
Necessity and scope of reparations
Principle 1: Human rights
Reparaons are crical to realising and
protecng the human rights of all people living
with demena.
• There have been failures to value the
individual living with demena and their equal
access to human rights.
• People living with demena experience
unequal protecon under the law.
• People living with demena are subject to
ageism, ableism and therapeuc nihilism.
• People living with demena, and their families
and care partners experience a lack of respect
and dignity.
Principle 2: Recognition
Reparaons are crical to ocially recognising
that the harm to people living with demena
is unlawful and wrong and that this harm has
ongoing and longer-term impacts on people
living with demena and their family members
or care partners.
• Harm to people living with demena has
not been acknowledged by governments,
residenal aged care providers, legal and
health professionals or broader society as
wrong and unjust.
• Care partners and family members are deeply
impacted by what has happened to their
relaves, and by how they themselves are
treated by residenal aged care providers and
in complaints processes.
• The current lack of respect and care, lack
of acknowledgement of harm and lack of
apologies for harm impacts care partners’ and
family members’ health.
Principle 3: Validation
Reparaons are crical to ensuring the
experiences of people living with demena who
have been harmed in residenal aged care and
their families and care partners are listened
to, validated, and acted on, so these experiences
are drivers of change which governments and
residenal aged care providers will be held
accountable for making.
• People living with demena are most oen
not believed, as sta are likely to dismiss their
concerns about harm, saying it is part of their
demena, such as delusions, hallucinaons or
confabulaon.
• Care partners and family members have
experiences of being silenced, excluded
and gaslit by residenal aged care sta and
managers and health professionals while trying
to stop the harm when it is occurring.
• The system tries to silence people, to prevent
governments and the aged care industry
having to confront the issues and make
structural change, thereby allowing them
to protect themselves from any forms of
reparaon.
Principle 4: Accountability
Reparaons are crical to ensuring all pares are
held to account for harm, including governments
and residenal aged care providers.
• The Royal Commission into Aged Care Quality
and Safety, and mulple inquiries before that,
found abuse, violence and neglect existed in
residenal aged care.
• Acknowledgment by residenal aged care
providers of harm to people living with
demena is needed as part of reparaons,
especially for individuals who have already
passed away.
Reparations for Harm to People Living with Dementia in Residential Aged Care 19
• If it does not cost the system anything to harm
people, the system will keep enabling harm.
• There must be legal, moral and economic
accountability.
• Health professionals working in residenal
aged care, including medical professionals,
have an ethical responsibility to review exisng
pracces and protocols to ensure they are not
repeang past harms (e.g., forced or coerced
movement into residenal aged care, use of
restricve pracces).
• Legal professionals, who might be physically
distanced from the sites of residenal aged
care facilies where harm is perpetrated,
need to be held accountable for their role in
enabling that harm (e.g., forced or coerced
movement into residenal aged care, use of
restricve pracces).
Principle 5: Prevention
Reparaons are crical to ensuring systems
and structures are changed and that the harms
experienced in the past are not repeated, now or
in the future.
• One of people’s greatest fears is that they
will end up in a residenal aged care facility,
and the abuse, violence and neglect is sll
happening.
• While the past cannot be changed, we can
learn from the past to prevent further harm.
• Structural and systems change is needed to
prevent harm.
• Reparaons will contribute to how we achieve
prevenon.
Principle 6: Justice and regulatory
failure
Reparaons are crical because of failures of
exisng jusce, regulatory and polical systems
to acknowledge and respond to this harm.
• The complexity and disempowerment
inherent to complaints processes, and the
fear of retaliaon following a complaint
are discouraging many people from making
complaints and are barriers to jusce and
accountability.
• People living with demena in residenal
aged care are oen unable or too fearful of
repercussions to advocate for themselves.
• Police and other invesgave and
prosecutorial do not respond appropriately.
• There is a vacuum in the jusce system
for recognising the rights of people living
with demena in residenal aged care and
providing court-based remedies for harm.
• Governments have failed to implement the
recommendaons of the Royal Commission
into Aged Care Quality and Safety and to listen
to people living with demena and their care
partners and family members.
Principle 7: Prot
Reparaons are crical because people living
with demena have been harmed in a prot-
driven industry.
• Despite the promise of care, minimal funds are
used on care.
• Prot usually seems to be more important
than direct resident services and care.
• Residenal aged care providers are driven by
reputaonal and risk management and an
avoidance of ligaon.
• Even not-for-prot residenal aged care
providers are increasing their asset bases.
• Prot is increased through violence, abuse and
neglect of people living with demena.
• Organisaons are not made accountable for
how they spend funds.
• Families and people living with demena sense
that residenal aged care providers see them
as ‘prot’.
20 Executive Summary
Forms of reparations
Principle 8: Rehabilitation and
improved living conditions
Reparaons must include counselling,
rehabilitaon and restorave care, including
support and resources to move out of one’s
exisng residence and into the community.
• Rehabilitaon does not necessarily make
up for the harm to a person living with
demena but could assist with support for the
disablement and/or trauma of having been
harmed and ensuring a person is removed
from a harmful environment.
• Immediate, resourced and coordinated
support to move individuals to a safe
environment in the community.
• An individual’s healing from harm must be
supported in a broader context of working
to restore the connecons, relaonships and
sense of belonging that an individual might
have had to a specic place and community
prior to entering residenal aged care.
• Access to counselling and other support
for care partners and family members who
live with ongoing guilt and trauma is also
necessary.
Principle 9: Truth-telling
Reparaons must include publicly available,
truthful accounts of harm to people living with
demena and the wide-ranging impacts of that
harm, which validate the experiences of people
living with demena and their families and care
partners and are followed by acons to prevent
future harm.
• Reparaons are about feeling that you have
been heard, you have been listened to, and
there is acon being taken to ensure change.
• An individual being able to see that their
experiences and story have impacted change
can be more important than compensaon.
• Truth-telling can help to dene and educate
others on the complex and diverse nature and
extent of harm.
• Public truth-telling can enable society to
reckon with what has happened and help to
create an ecosystem of accountability and a
foundaon for moral repair.
Principle 10: Apologies
Reparaons must include apologies by
residenal aged care providers and governments
which are followed by acons to prevent future
harm.
• Public apologies must be made by
governments, residenal aged care providers
and legal and health professionals.
• Apologies are meaningless if they are not
followed by concrete acon.
Principle 11: Monetary payments
Reparaons must include monetary payments to
provide symbolic recognion of harm to people
living with demena, reimburse payments for
residenal aged care, cover cost of rehabilitaon
and restorave care, and fund advocacy and
legal costs.
• Monetary payments signal to society and
residenal aged care providers harm has been
done, they are accountable, and that people
living with demena maer and are valued,
and have had their rights denied.
• Residenal aged care fees must be reimbursed
– people pay for care that was never provided.
• The requirement that residenal aged care
providers make monetary payments can be an
incenve for them to change.
• It is less about the money, and more about
having assurance that the harm is not going
to happen again, acon will be taken and the
system will be xed.
Principle 12: Sanctions
Reparaons must include sancons to hold
residenal aged care providers (including board
and sta members), governments (including
public servants), and medical and legal
professionals accountable for harm.
• Reparaons need to be at every level – e.g.,
sta on the oor providing care, board
members and managers overseeing care,
public servants and policians making and
administering policies and laws about aged
care and regulang aged care, and legal and
health professionals who work in residenal
aged care.
Reparations for Harm to People Living with Dementia in Residential Aged Care 21
• Careful consideraon must be given to how to
approach accountability of sta in lower paid
or insecure roles who are not in any posion
of control and lack choice in how they perform
their dues.
• Prevenng larger residenal aged care
providers from having such strong es to
governments is necessary as a way to enhance
accountability, and to prevent policies that are
part of a system that allows harm to happen,
being accepted by governments.
• The potenal use of an-corrupon, antrust
and compeon laws can be explored as tools
to prevent inuence of residenal aged care
providers on governments.
Principle 13: Human rights-based
reform
Reparaons must include human rights reform
of aged care governance, laws and pracces led
by people living with demena and their families
and care partners, in order to prevent future
harm.
• Systems and policies at all levels need to be
transformed.
• All reforms need to be human rights-based,
so they do not result in more human rights
violaons.
• De-instuonalisaon and de-segregaon are
needed in line with internaonal human rights
norms.
• De-instuonalisaon and de-segregaon are
happening in the broader disability sector.
• Reforms need to prevent chemical, physical
and other methods of restraint.
• Change in the future must be based on what
is learned from the past, otherwise the past is
repeated in reforms.
Principle 14: Sta and board
training
Reparaons must include training and educaon
on demena to healthcare and legal students
and residenal aged care providers and all sta
and board members, including on human rights
and demena as a disability.
• The lack of training on demena, and on
demena as a disability creates harm in itself.
• Educaon only about demena is insucient
and inadequate, and also needs to be framed
in human rights.
• Respect, dignity, and personhood are crical
to provide the kind of change needed, and for
a more humane person-centred care within
Australian residenal aged care facilies.
• Educaon must be co-designed with people
living with demena.
• All residenal aged care sta must receive
training, including hospitality and cleaning sta
and training must be frequent, ongoing and
updated.
• University and TAFE students also need
training – ideas are formed before people start
working in residenal aged care.
• Principle 15: Empowerment and advocacy
• Reparaons must include measures to
empower people living with demena to
realise their human rights and provide
resources to advocate.
• Too few people living with demena are able
or willing to speak up for their own rights.
• Families and care partners are oen unwilling
to make complaints or take legal acon, for
fear of retaliaon and addional harm to the
person living with demena in care.
• The voices of people with the lived experience
of demena must be beer represented,
including from more diverse groups.
22 Executive Summary
Reparations processes
Principle 16: Recognise diversity
Reparaons processes must be centred on
individuals’ diverse idenes and experiences,
including individuals’ gender, sexuality, disability,
Indigeneity, cultural and linguisc diversity, and
histories of instuonalisaon, incarceraon
and vicmisaon.
• Reparaons processes must recognise and
respond to individuals and their experiences
based on cultural, religious, gender identy
or other factors, in parcular people who
experience intersecng forms of discriminaon
and associated structural violence, trauma and
harm.
• Sta working in reparaons processes and
advocates must be provided with training in
working with people living with demena from
diverse communies, with a human rights
approach.
Principle 17: Trauma-informed
Reparaons processes must be trauma-informed
and culturally safe.
• Reparaons processes must not retraumase
the people who have been harmed, or their
families or care partners.
• Reparaons processes must not cause further
harm in trying to right previous harm.
• Accessible and aordable avenues must be
available to receive the right advice, support
and counselling.
Principle 18: Disability inclusion
and access
Reparaons processes must be inclusive and
accessible to all people with disability, including
disability associated with demena.
• Exisng court and complaint processes are
not accessible to or adequate for people living
with demena.
• People living with demena must be able to
access informaon about reparaons, e.g.,
Easy Read informaon, access to advocacy
support.
Principle 19: Inclusive, accessible
and equitable
Reparaons processes must be inclusive,
equitable and accessible to all people who have
been harmed or impacted.
• All residenal aged care facilies must have a
mandatory noce board and other informaon
about legal and human rights and reparaons
that are accessible for people living with
demena and their care partners and family
members.
• The informaon must include details of
advocacy organisaons or legal services that
can assist with complaints.
• Online and paper complaints must be made
available, as not all have access to the internet.
• Public awareness of reparaons, and what
forms it can take, is vital.
Principle 20: Promote reparations
Reparaons processes must be supported by
disseminaon and accessibility of informaon
about reparaons, including to people who are
socially isolated or have cultural, language or
literacy barriers.
• Reparaons must be known about in order for
people living with demena to access them.
• Some people living with demena might rely
upon their care partners and family members
for informaon, and for reparaons.
• Not every person living with demena has
family and social networks to help them access
informaon about reparaons.
• Some people living with demena have
nancial, cultural, locaon or cognive barriers
to accessing informaon about reparaons.
• Residenal aged care providers might not
make informaon about reparaons accessible
– they act as gatekeepers.
Reparations for Harm to People Living with Dementia in Residential Aged Care 23
Principle 21: Collective applications
Reparaons processes must include an opon
for collecve applicaons.
• Power imbalances between an individual and
the residenal aged care provider and/or
governments.
• Group applicaons can address power
imbalances and the sense of isolaon, and
also provide solidarity to individuals and their
families.
• Residents may need an advocate, or a union to
support them, and to ensure acon is taken.
• A process is needed to counterbalance the
reality that sta and other professionals are
more likely to be believed than residents or
their families.
Principle 22: Independent advocacy
Reparaons processes must include access to
free, independent and experienced advocacy.
• A person’s ability to self-advocate – the power
to represent oneself – is lost in residenal
aged care because of the closed and controlled
nature of instuonal sengs, and the
loss of individual agency caused in part, by
instuonalisaon and segregaon.
• Reparaons must be easily available to
people living with demena and their care
partners and family members, including being
accessible and aordable.
• A lack of personal funds must not hinder or
prevent access to reparaons.
Principle 23: Safe, timely,
independent and transparent
Reparaons processes must be safe, mely,
independent and transparent, without risk of
retaliaon.
• People must be safe from retaliaon by
residenal aged care providers, sta and
health and legal professionals.
• People living with demena must be safe from
nancial exploitaon by family members,
residenal aged care providers, lawyers and
advocates.
• Reparaons must take place outside of
the residenal aged care facility and be
independent of governments, residenal
aged care providers and legal and health
professionals.
• Transparency is crical, parcularly because
of exposed problems with exisng complaints
processes.
• Reparaons need to be determined within
a specied meframe to be eecve,
parcularly if the harm is sll occurring, the
impact is severe and immediate support is
required, or the person living with demena is
at risk of passing away.
Principle 24: Communication and
enforcement of outcomes
Reparaons processes must include
communicaon of outcomes to individuals and
monitoring and enforcement of outcomes.
• There must be a feedback loop to ensure that
residenal aged care providers, governments,
and health and legal professionals take the
acon they promised to take through truth-
telling, apologies and other reparaons
processes.
• Reparaons are likely to be ineectual
and empty without monitoring of, and
enforcement of acons.
Principle 25: Reform justice and
complaint systems
In addion to reparaons, individuals must
have equal access to criminal jusce, civil jusce
and complaint systems, and governments must
make reforms to ensure these systems are safe,
accessible and inclusive.
• If a person has demena, their complaints or
their family’s and care partner’s complaints
about the harm are not taken seriously.
• Police and other invesgave and
prosecutorial authories view people living
with demena as lacking capacity to report
harm and give formal evidence in support.
• Reforms to all systems are needed, including
criminal and civil jusce mechanisms, and
aged care complaint systems.
• Equal access to jusce for people living with
demena means they should have equal
access to the jusce system, as well as to
reparaons.
24 Executive Summary
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Reparations for Harm to People Living with Dementia in Residential Aged Care 25
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32. Carolyn Frohmader and Therese Sands,
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with Disability in Instuonal and Residenal
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Tina Minkowitz, ‘Reparaon for Psychiatric
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26 Executive Summary
System (Report, December 2022).
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36. See eg Hannah Flamm, ‘They Want Docile’:
How Nursing Homes in the United States
Overmedicate People with Demena (Human
Rights Watch, 2018);
Caroline Emmer De Albuquerque Green,
Anthea Tinker and Jill Manthorpe, ‘Human
Rights and Care Homes for Older People:
A Typology of Approaches from Academic
Literature as a Starng Point for Acvist
Scholarship in Human Rights and Instuonal
Care’ (2022) 26(4) The Internaonal Journal of
Human Rights 717.
37. Pia Kontos et al, ‘Separate and Unequal: A
Time to Reimagine Demena’ (2021) 80(4)
Journal of Alzheimer’s Disease 1395
Rachel Herron, Chrisne Kelly, and Kae
Aubrecht, ‘A Conversaon About Ageism:
Time to Deinstuonalize Long-term Care?’
(2021) 90(2) University of Toronto Quarterly
183.
In relaon to public debate, see Sara
Luterman, ‘It’s Time to Abolish Nursing
Homes’, Naon (11 August 2020); Gerard
Quinn and Ann Campbell, ‘Nursing Homes
Must be Made a Thing of the Past’, Irish Times
(20 May 2020).
38. See eg Commiee on the Rights of
Persons with Disabilies, Guidelines
on Deinstuonalizaon, Including in
Emergencies, UN Doc CRPD/C/5 (10 October
2022);
Catalina Devandas-Aguilar, Internaonal
Principles and Guidelines on Access to
Jusce for Persons with Disabilies (Special
Rapporteur on the Rights of Persons with
Disabilies, August 2020);
Catalina Devandas-Aguilar, Report of the
Special Rapporteur on the Rights of Persons
with Disabilies, UN Doc A/74/186 (17 July
2019);
Claudia Mahler, Older Persons Deprived of
Liberty: Report of the Independent Expert on
the Enjoyment of all Human Rights by Older
Persons, Claudia Mahler, 13 September 2022,
UN Doc A/HRC/51/27;
Gerard Quinn and Israel Doron, Acve Social
Cizenship for Older Persons: The Current Use
and Future Potenal of the European Social
Charter (Council of Europe, August 2021).
Reparations for Harm to People Living with Dementia in Residential Aged Care 27