Submission
No 6
SUPPORTED DECISION-MAKING IN NSW
Name: Mrs Theresa Flavin
Date Received: 10 March 2026
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Supported Decision Making for Older Persons in NSW
Submission - Supported Decision Making in the Specific Context of Dementia in NSW
Theresa Flavin
January 2026
Introduction
Supported Decision Making (SDM)has been historically put forward as an ‘antidote’ to substitute decision making, predominantly in the disability and human rights context. This is admirable and productive, however to date, almost all research and advocacy in the development of SDM methodology has been predicated on younger people with disability. In the context of dementia care, research has defaulted to indirect proxy or carer perspectives. The unique perspective of actual individuals living with dementia has been broadly outweighed by the views of our care partners. Whilst these views are valid and important, it is equally incumbent upon policymakers who rely on ‘evidence’ as a basis for policy and funding to understand the direct living experience of people actually living with dementia. To date, we find that the symptoms of dementia have been collapsed into the end stage, resulting in an overall view across society that we are incapable of providing meaningful or insightful evidence about our own situation. This is simply a matter of expediency, as dementia is a progressive terminal disease, with many years of gradual increase in symptoms.
Throughout these early post diagnosis and prodromal years, whilst we may need a little extra time, and more careful questioning, we absolutely continue to retain self awareness and insight on our condition, and the impacts of poor and misaligned services and practices on our human rights and wellbeing. Proxy based research has resulted in significant misalignment between ‘evidence based interventions’ and ‘successful interventions’ from the perspective of the individual concerned. This is particularly apparent in the context of behaviour support.1 The assessment tool selected to assess changes in behaviour of older people was originally developed to assess the costs of supporting school leavers with disability looking for work. It was developed in a different time for a different cohort. The overall wording of the assessment tool implies intent from the individual. Terms such as ‘manipulative’ are absurd in the context of late stage dementia when executive function is almost absent. The government’s measure of success for the BRUA was said to be that it calculated similar figures to the previous assessment, which was in place during the period explored by the Age Care Royal Commission…. This is an example of the significant misalignment between what is considered to be ‘evidence’ and the reality of dementia. The results are of course leaving most of us in abject despair for our futures in terms of behaviour support/suppression.
SDM literature therefore does not translate easily to the dementia context, as it is fundamentally based around capacity building in the disability sector, which is precisely the opposite of what
1 https://onlinelibrary.wiley.com/doi/pdf/10.1111/ajag.13142
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people with dementia need. We need capacity maintenance and scaffolding. SDM should provide a bridge between our malfunctioning brain and the outside world. Instead we are provided with simplistic persuasion, sing song voices and abject gaslighting. We can and must do better. That being said, I would strongly recommend review of the work of Sinclair et Al2
We must also explore ways to support the older people who do not engage with government funded age care services. NSW specific date is unavailable (which is an enormous policy gap in itself and deserves attention). In 2022 across Australia there were approximately 4.45 million people aged over 653. AIHW reports that in 2023/24, around 1.3 million engaged with age care services4. This is around 29%. It is also worth considering that the ABS reports that around 52% of older people live with disability, and this proportion increases systematically with age.5 Due to NDIS constraints and the closure of DSOA, a large proportion of older people in NSW and across Australia are living with disability and are not engaging with funded age care services.
Royal Commission investigations and testimonies revealed that many older people avoid or delay accessing age care due to fear of losing independence, distrust of the system, lack of culturally safe services,system complexity, stigma, poor previous experience and lack of advocacy/navigation support.
This results in a significant number of older people, older people living with disability and informal carers who have no meaningful access to high quality contemporary and accessible information about supported decision making in general. This is another policy gap that can be addressed.
We also face the dilemma that in a rights based age care system, our human rights are only as valuable as our ability to claim them. We are wholly locked out of any meaningful way to plan for our future dementia care. Assessment tools are used as rationing tools, and block access to meaningful palliative care planning, meaningful behaviour support planning and robust estate planning free from coercion, romantic scams and vexatious litigation amongst family members. All of these matters can be easily rectified if NSW chooses an early intervention and post diagnostic care and asset management pathway for people living with dementia. NSW has the unique opportunity to work directly with people living with dementia, who have no funding
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imperative, no conflict of interest and no agenda aside from genuine grassroots improvement of quality of life, dignity and autonomy, as well as genuine safety as our abilities diminish. I urge you to read this submission with fresh eyes and a spirit of curiosity and I wish you and the team well in your endeavours.
The pinch points of SDM in dementia
To provide some structure to the submission, after extensive consultation with older people and people living with dementia through my advocacy work with Dementia Alliance International, Dementia Australia and OPAN, i will describe the situations in somewhat chronological order, where SDM, the right to self support by way of advance directive and independent support for decision making is most critical, and provide community based suggestions and solutions. This is written with a view to promote our human rights and autonomy as long as possible, and to project our own will into the future, bolstering our cognitive independence. These pinch points coincide with some of the most common ‘opportunities for exploitation’ of older people, and are accompanied by some suggested solutions to counter the scourge of elder abuse in NSW.
Making and Changing The Will
In the course of working with UTS law students on working with people living with dementia, it quickly became apparent that there is much consternation around the concept of ‘legal capacity’, SDM and the broader subject of will, preference, undue influence and coercion. This is a minefield for legal practitioners who are broadly operating without support or training in this area. Everyone agrees that an independent service is needed to support legal practitioners to provide genuinely rights based legal advice in this situation. The absence of professional guidance and metrics leaves these practitioners in a vulnerable and difficult position as they try to respect the genuine will of the individual, whilst managing the views of their ‘supporter’. This is a frank conflict of interest situation, and work needs to be done not only to protect our older people, but to protect and support our legal professionals.
Independent support for decision making when making a will or financial plan could be made available to legal practitioners. Seniors rights services are not funded for this service, and it excludes people with younger onset dementia anyway. This would be an ideal service for legal studies TAFE and university students to provide, which would link them to real world work experience, and mentoring from legal practitioners. This would be a cost effective way to support the human right to supported decision making without undue influence, coercion or conflict of interests that is inherent in the current system. A referral system could be built
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between practitioner professional organisations and universities. Needing only modest funding as it would be a very important component of ‘work experience’.
In taking legal advice to make a will, it was also quickly apparent to me that due to the dementia diagnosis, and taking all appropriate precautions to support my ‘legal capacity’ at the time of signing, that the will could be challenged on the basis of capacity. This would comprise vexatious litigation. It was also discussed that family court could intervene and redistribute assets based on perceived need, potentially in a way that was incompatible with my original will.
It was also apparent that I could change my will in the future, if I were to encounter a legal practitioner who did not place much focus on my legal capacity, or if I were to not disclose that I had dementia. This is a regular feature of financial elder abuse, where opportunistic ‘family and friends’ can ‘swoop in’ and offer care that is often not delivered.
A more troubling avenue for elder abuse is the ‘romance scam’. You will be aware of these so i will not go into detail. I have personally been approached twice. In both instances the men were right here in NSW. Their mode of operation was to offer assistive technology, in my case a wheelchair and a recliner. They found me on social media, where I had foolishly posted the fact that the NDIS did not consider a wheelchair to be good value for money. Both men went to extensive efforts to find my address and contact details. One succeeded, and fortunately I had a male support worker and an adult daughter at home, who were able to move him on. This was extremely troubling as so many older people live alone, and this was clear from the expression of shock and consternation from the male that turned up at my door unannounced. He actually said that he was surprised that I had family around, as most older people with dementia live alone and need lots of ‘help’. This ‘gent’ described himself as a ‘financial advisor’…
The difficulty we are experiencing in the context of asset distribution is the fact that marriage will automatically override any preexisting will. There is no capacity assessment for marriage, and NSW relies on the marriage celebrant challenging ‘capacity’. Of course there is no data available to tell us if this has ever happened in NSW.
Even outside of the dementia/capacity situation, there is no safeguarding of any sort for older people with varying levels of vulnerability in this domain. This matter will become increasingly urgent as the population ages at the same time as the superannuation balances begin to mature. Engagement not only of elder abuse legal practitioners, but the banking, superannuation and insurance industry, financial advisors, APRA and people with dementia will be required, as well as consultation with old age psychiatrists, psychologists, neurologists and other medical professionals. Older people, people living with dementia and our families and dependents deserve the freedom and opportunity to secure our own futures independent of the guardianship system. We want a useful deterrent to predatory actors, and a civil mechanism for when things go wrong that do not meet the bar for criminal conviction.
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Advance Identity Directive, A Proposition for Discussion
I am a human rights advocate, therefore I am not proposing more regulation or gatekeeping of the freedoms and rights of older people. Instead I am advocating for mechanisms that we can use to protect ourselves in the future when our decision making ability may be compromised and our cognitive sovereignty is becoming diminished. I am proposing the concept of an ‘advance identity directive’ for people formally diagnosed with dementia. I would frame this as giving us a pathway to support our own decisions, empowering older people and freeing up NSW state resources:
Advocating for separate legal identities for an individual before and after dementia in Australia would involve challenging the fundamental legal concept of a single, continuous personhood across a lifetime. Currently, the law treats a person as one legal entity, with capacity fluctuating but not splitting into distinct identities based on cognitive changes. This proposal would require redefining personhood to recognize a “pre-dementia self” and “post-dementia self” as legally separable, each with its own rights, responsibilities, and decision-making status. I have currently related this to ‘will and preference’ to connect the living experience of dementia to the present legal frameworks. I describe this in my personal situation as Theresa 1.0 - early mid stage dementia, decision making ability somewhat compromised, intellect predominantly intact (Will). Decisions scaffolded with support.
Theresa 2.0. Late to end stage dementia, decision making is greatly compromised even with support. Decisions based predominantly on undifferentiated intuitive perception. (Preference).
I propose the following clarification of “separate legal identities” in the context of dementia and neurodegenerative disorders for discussion:
Pre-Dementia Identity: The individual’s autonomous, competent self before significant cognitive decline, with full control over decisions (e.g., finances, medical treatment, property). The ‘will’
Post-Dementia Identity: The individual after severe cognitive decline, where capacity is lost, and decisions are typically managed by guardians, providers or advance directives. ‘The preference’
Goal: Treat these as distinct legal “persons” or agents, so the pre-dementia self’s intentions (e.g. distribution of assets) aren’t overridden by the post-dementia self’s incapacity or third-party assumptions.
For example, the pre-dementia self could have a legally enshrined “right to permanence,” binding the post-dementia self beyond what current advance directives allow.
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The overall point of an ‘advance identity directive’ in dementia, is to give the original individual the freedom to place their ‘will’ into the equivalent of an ‘irrevocable trust’, and enable the individual to protect themselves from potential future decisions that are incompatible with the original intent.
For example, increasingly, older people with dementia are being targeted by both known persons and scammers - including romance scams of varying nature. Through coercive tactics such as love bombing and other mechanisms. Whilst legal capacity is meant to be the protective mechanism, legal capacity is not particularly well defined, and many decisions do not attract a legal capacity threshold such as marriage. For many older people who do not have a resourceful person safeguarding them and intervening, this is a handy way to move assets around outside of the legal capacity space.
There is now a new weapon in the elder abuse perpetrators arsenal - the co contributions regime, where a financial power of attorney who chooses not to erode the estate, will have the ability to deny service to the individual. There is no safeguarding mechanism for this eventuality. It will be clumsy to implement a provider reporting mechanism. Since only 29% of older people use funded age care, with privately funded care becoming increasingly financially attractive to self funded retirees - again with access often being at the discretion of the guardian.
This initiative would not be designed for all older people, it is specific to dementia and for specifically self identified decisions. The whole point is to give people the right to make their own decisions, and to protect those decisions from a future version of themselves who does not have access to the morals, ethics and values obtained through the life course, who is guided by the preference of their limbic system more than their intellect.
Law Reform Argument: Establishing an Advance Identity Directive to
Protect Autonomy
- Rationale for Reform Pre‑Dementia Australian law already recognises that people have the right to make binding decisions in advance of losing capacity, particularly through Advance Care Directives (ACDs). These instruments are explicitly designed to preserve a person’s autonomy when dementia progresses and they can no longer reliably express or communicate their wishes.
The Australian Government states that an ACD records a person’s “needs, values and preferences for future care” and is intended to guide decisions “when you can no longer make or communicate decisions yourself.”
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Dementia Australia67 similarly emphasises that planning ahead ensures that “your wishes are respected” when dementia affects memory, reasoning, and communication.
These frameworks establish a clear legal principle: earlier, capacious decisions should guide later periods of cognitive impairment.
- The Problem: Dementia Produces Decisions That May Be Incompatible with
Earlier Values Late‑Stage
dementia is characterised by profound changes in memory, reasoning,
communication, and behaviour. research shows that people in advancedLate‑stagedementia often cannot express consistent or informed preferences, leading to decisions that Peer‑reviewedmay conflict with their values or earlier directives. long‑standingA major study on in dementia notes that people in advanced stages
are often assumed to be “unable to express their needs,” resulting in decisions that may not end‑of‑life decision‑makingreflect their prior wishes.8
The Journal of Medical Ethics similarly reports that dementia produces “severe communication and reasoning impairment,” forcing families and clinicians to make decisions late‑stagethat may diverge from the person’s earlier values9. These findings demonstrate a structural gap: current law protects medical preferences but not the person’s commitments, which underpin decisions such as wills, relationships, cultural obligations, and life projects. identity‑defining
- Proposed Reform: Create an Advance Identity Directive (AID) An Advance Identity Directive would operate alongside existing ACDs and enduring powers by allowing a person, while they still have capacity, to formally record:
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their core identity commitments (values, beliefs, relationships, cultural obligations, life projects)
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the interpretive principles that should guide future decisions ● a requirement that substitute and courts prioritise these
identity commitments when expressions appear inconsistent decision‑makers or pre‑dementia late‑stage disease‑driven
6 https://www.health.gov.au/topics/palliative-care/planning-your-palliative-care/advance-care directive
7 https://www.dementia.org.au/living-dementia/what-next-after-your-diagnosis/planning-ahead
8 https://link.springer.com/content/pdf/10.1186/s12904-022-01097-x.pdf 9 https://jme.bmj.com/content/47/12/e39
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- A requirement that matters such as will and asset distribution cannot be changed either by the individual themselves, or through marriage, defacto arrangements or other means.
This instrument would not replace existing legal tools; it would fill the gap between medical directives and testamentary documents, ensuring that the person’s identity—not just their treatment preferences—remains authoritative.
4.0 Precedent autonomy is already recognised in Australian law
Advance directives are binding because they reflect the person’s capacious self—the version of the person capable of reasoning, weighing consequences, and expressing stable values. ACPA and Dementia Australia jointly affirm that advance directives promote “choice, control and over future medical treatment, for a time when they may lack capacity.10”decision‑making decision‑making An AID extends this principle from treatment to identity, ensuring that the person’s earlier, capacious self continues to guide decisions across all domains.
4.1 Protecting the will pre‑dementia dementia can produce decisions or behaviours that appear inconsistent with the
person’s values. Without an AID, these expressions in a rights basedLate‑stageframework may be misinterpreted as authentic preferences, and acted upon accordingly long‑standing late‑stagepotentially undermining:
● the validity of the will
● the person’s cultural or relational commitments pre‑dementia ● their previously expressed life goals
An AID would provide a legally recognised interpretive anchor, ensuring that courts and
substitute prioritise the person’s identity when assessing the
authenticity of decisions. decision‑makers pre‑dementia late‑stage4.2 Alignment with human rights obligations
The CRPD requires states to provide support for the exercise of legal capacity, not to replace it with paternalistic assumptions. An AID functions as a supported decision‑making
10 https://www.advancecareplanning.org.au/professional-resources/policy-and-advocacy/acpa-and dementia-australia-position-statement-advance-care-directives-for-people-with-dementia
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tool across time, preserving the person’s identity and autonomy even when cognitive decline prevents active participation.
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Conclusion An Advance Identity Directive is a necessary and reform that: rights‑consistent ● protects the integrity of the will
● prevents expressions from overriding values pre‑dementia ● strengthens supported late‑stage, disease‑driven long‑standing ● aligns with existing legal principles of precedent autonomy decision‑making ● fills a critical gap in current Australian law
This reform ensures that people with dementia remain the authors of their own lives—even when the disease affects their ability to express who they are.
Foundational Argument
Legal Basis
The principle of autonomy is central to capacity law (e.g., Re T [1992]). I argue that the pre dementia self’s autonomy is erased when the post-dementia self’s incapacity triggers guardianship, effectively creating two misaligned “persons.”
In corporate law: a company’s legal identity persists despite changes in leadership; similarly, the pre-dementia self could retain a distinct legal status despite cognitive shifts.
Ethical Basis
I want to emphasise the continuity of dignity and identity. The pre-dementia self’s values (e.g., a desire to avoid marriage or defecto relationships in an incapacitated state) should not be superceded by a post-dementia state i wouldn’t recognise as “mine.”
This can be framed as a human rights issue: the right to self-determination should extend across cognitive stages, not dissolve with dementia.
Evidence Base
There is a significant evidence base for the dissolution of ‘identity’ in late stage dementia. I will briefly outline what this looks like.:
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Overview:
Dementia gradually erodes a person’s sense of identity—their understanding of who they are, shaped by memories, relationships, personality, and daily abilities. This “dissolution of identity” isn’t sudden but unfolds as the brain changes, leading to confusion about one’s own life story, roles, and connections to others. It’s like a fading photograph where details blur over time, though some core elements might linger even in advanced stages.
Dementia research describes a progressive diminishment of identity, however I would personally describe this a progressive inability to link the internal identity with the body and the outside world. Identity in this context is understood as the core sense of who a person is—built from memories, roles, personality traits, and social connection, which appears to erode as cognitive functions decline. This isn’t a complete erasure but a gradual fragmentation, often described as a “petrified self” that’s stuck in time or a “psychological discontinuity” that feels like a “living death.” Research highlights how this unfolds across stages, with specific quotes illustrating the emotional and relational impacts.
In early to mild stages, access to identity begins to fragment as memory lapses and functional changes emerge, leading to self-doubt and role adjustments. People may still have insight into their changes, prompting grief over lost confidence or abilities. For instance, women with mild dementia report fundamental shifts in personality and self-reliance: “That’s the biggest thing I’ve noticed – my personality. I’m not the Sally I used to be. I know I’m different… I’m not the person I was. And that…bothers me.“11 Another describes losing her role as the family anchor: “I was always the one in charge. I was really strong… And now…well, she doesn’t rely on me anymore, for anything. I’m the one that relies on everybody else. So compared to what I used to be like, I’ve changed a lot. I just haven’t got the confidence anymore.“12 In Alzheimer’s disease (AD), episodic memory impairment starts affecting recent events, anchoring the perceived self to the remote past and creating an “outdated self-narrative” where “who I was becomes who I am.“13
As dementia moves to moderate stages, identity diminishment deepens with broader cognitive losses like amnesia, apraxia, and agnosia, disrupting self-integration and social roles. Memory deficits prevent updating personal information, resulting in a “petrified self” frozen in early adulthood or childhood, with “stable but inaccurate self-evaluations.14”
11 https://pmc.ncbi.nlm.nih.gov/articles/PMC8811322/
12 https://pmc.ncbi.nlm.nih.gov/articles/PMC8811322/ 13 https://pmc.ncbi.nlm.nih.gov/articles/PMC6726574/ 14 https://www.ncbi.nlm.nih.gov/books/NBK552152/
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In semantic dementia (SD), recent personal facts are preserved but remote ones erode, leading to a “static self” with no growth and “rigid and stereotypical behaviours… strong preference for routine.“15 Behavioral variant frontotemporal dementia (bvFTD) shows “marked personality and behavioural change… alterations in defining characteristics… combined with a pervasive lack of self-awareness,” equating to “a much more profound disruption of the self.“16 Relational identity suffers, often with violation of dignity as a result of real or perceived neglect.: a caregiver describes a relative left unfed as “a cold tray of food on his bedside table… Obviously nobody was going to feed him,” implying a loss of personhood.17 Negative discourse externally reinforces the ‘unpersoning’ openly describing individuals as “a ‘demented person’ in a wheelchair who isn’t able to move,” making them feel “small and unimportant.“18
Importantly for the purposes of our submission, in advanced or late stages of dementia, identity dissolution becomes profound, with severe impairments creating a sense of “living death” or total discontinuity. The self faces “depersonalisation” and becoming “non-persons,” as “the loss of self and deterioration of identity… means there is a psychological discontinuity across time and space, though biological continuity is retained.“19 This is what I am trying to describe in the introductory paragraph. The legal system treats the human body as one continuous individual identity, assuming direct and unimpeded access to a lifetime of memory, decisions, opinion and ethical/moral self development. The person with advanced dementia does not have access to many of these concepts, and is unable to match them to a contemporaneous situation or decision in any meaningful way. Hence the original individual as envisaged by the legal system is no longer in charge of the physical body in question.
In Alzheimer’s disease,, “impoverished episodic memory and future construction leads to a global decay in subjective self-continuity across temporal contexts,” where individuals “no longer mentally relive their past memories, instead reporting that they simply ‘know’ the events to have taken place… autonoetic re-experiencing is grossly compromised.“20 Communication ability fragments, impacting our self-presentation and ability to express ourselves, with “reduced synchrony, vague cues, and primitive reflexes leading to chaotic behavior,” alternating between fleeting “moments of homecoming” and profound “homelessness.“21 The ability to practice autonomy in the way that we understand it eventually fades entirely, as “the inevitable decline of decision making capacity with the progression of the disorder” leaves individuals unable to fulfill prior roles or maintain consistent values.22
15 https://pmc.ncbi.nlm.nih.gov/articles/PMC6726574/ 16 https://pmc.ncbi.nlm.nih.gov/articles/PMC6726574/ 17 https://pmc.ncbi.nlm.nih.gov/articles/PMC9109213/ 18 https://pmc.ncbi.nlm.nih.gov/articles/PMC9109213/ 19 https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2021.700567/full 20 https://pmc.ncbi.nlm.nih.gov/articles/PMC6726574/ 21 https://www.ncbi.nlm.nih.gov/books/NBK552152/ 22 https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2021.700567/full
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In late-stage dementia, academic arguments from psychology and psychiatry posit a profound loss of personal identity due to psychological discontinuity, where the individual’s pre-disease self—defined by memory, narrative coherence, reflexivity, and autonomy—erodes, effectively rendering them a different person. 23 Psychiatric insights further underscore that while some semantic self-knowledge may persist, the inability to update it due to memory deficits results in an outdated or dissolved identity, akin to a “dismantling of the self.”2425 26 Such identity loss has ethical implications for decision making and the legal concept of continuity of identity and personhood. 27
I am not arguing in any way that the internal ‘self’ is completely gone, or that the ‘empty shell’ trope has any meaningful value in determining the personhood of an individual with dementia, I am in fact arguing that for the purposes of legally binding decision making ability, that the break in continuity of access to the ‘self/identity’ de facto creates a secondary identity. Currently, this secondary identity which I call Theresa 2.0 will supersede Theresa 1.0 in many legal medical and social matters. Both Theresa’s will be superseded by a proxy or substitute.
If the self/legal identity is unavailable, then which version of Theresa is actually operating the body and making decisions? Who exactly are the supporters supporting?
Proposed Protections
Judicial Test
I suggest discussion of stringent mechanisms to establish the separation for example:
Evidence of pre-dementia competence (e.g., via medical records or witnessed statements).
Evidence of Diagnosis of dementia with significant cognitive shift (per DSM-5 criteria). This could be reinforced by requiring a second specialist opinion - similar to TPD/Taxation requirements. Significant consultation would be required to establish the testing regime,
23 https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2021.700567/full 24 https://www.ncbi.nlm.nih.gov/books/NBK552152/ 25 https://inserm.hal.science/inserm-00874387/file/IDMA_HAL.pdf 26 https://www.sciencedirect.com/science/article/abs/pii/S1568163719300133 27 https://pmc.ncbi.nlm.nih.gov/articles/PMC7538443/
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Evidence of legal capacity at the time of making the directive
Stipulation of when the directive is triggered (for example using the same test as used at diagnosis that would be compatible with a medical assessment of legal capacity, or alternatively the individual could select circumstances such as specific stages of dementia as assessed by gerontologist) This would be similar in nature to when guardianship is triggered due to lack of capacity in specific domains. Contingency plan in the unlikely event that a cure becomes available and is effective. The individual would need to test in the normal cognitive range more than once.
Example: “Upon dementia diagnosis, John’s pre-dementia identity retains ownership of his estate, setting conditions for payment for his care and support needs, backed up by a specific ‘capacity test’ while his post-dementia identity can only access it under strict conditions set by John himself in conjunction with his legal and medical team.”
Counterarguments
Continuity of Personhood. - Critics may argue a person remains one entity over time. As above, I argue that dementia’s radical transformation—loss of memory, personality, agency—creates a de facto new identity, warranting legal recognition.
I recognise an element of practical complexity: - Courts and practitioners might balk at managing two identities. This is not a responsive suggestion for change, it is meant to be a pro active, well researched and considered matter with input from all stakeholders. It is at heart, a rights based initiative, designed to empower older people to make their own arrangements and have them respected. It is designed to reduce burden on tribunals and courts, and give genuine robust input to the individual concerned, at the time they are able to provide such input. It is designed for people who want this level of safety.
I propose a streamlined process (e.g., a one-time declaration) and point to existing systems (e.g., enduring powers of attorney) as proof of feasibility.
Some may fear this sets a precedent for other conditions (e.g., DID, Transsexual individuals). I would clarify that dementia’s progressive, irreversible nature distinguishes it, thus strictly limiting the scope.
Many many older people and their families live in fear of rights based decisions made by their future selves, that are fundamentally incompatible with the values, morals and ethics of a
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lifetime. Human rights have a paradoxical outcome in the context of dementia, and we can go a long way to make room for our difference in NSW. We have human rights, now we ask/beg for the right to meet our human responsibilities.
Recommendation 1
Consider the concept of an Advance Identity Directive in the strict context of dementia and other terminal, untreatable, intractable and progressive causes of cognitive decline, as a protective legal proactive mechanism for older people in NSW.
SDM in behaviour support planning.
Overview of changed behaviour from the perspective of a person living with dementia.
Changes in behaviour are one of the most traumatic and disturbing aspects of dementia. Not only to those of us living with the condition, but differently disturbing to our loved ones and carers. I have spoken to so many older men who live in fear of becoming a sex pest in the later stages of dementia. They have no power to ask for intervention in advance, and they have each expressed a desire for voluntary assisted dying, as they cannot live and contemplate this future. Similarly, people of deep faith and in committed relationships dread the later stages of dementia, where the commitments of a lifetime are shattered when the partner living with dementia engages in sexual relations with a relative stranger. Whilst the human right to relationships and sexual expression must be honoured, supported and respected, the right to decline deserves equal weight. As noted above in relation to asset distribution, we need appropriate and robust mechanisms to plan for the activities of a body that we are no longer in charge of. It is also a matter of significant importance that active informed consent is a legal requirement, and it is absolutely questionable to assume active informed consent for sexual relations is in place in late stage dementia.
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The right to advance planning for behaviour support goes further than sexual activity. Matters of the spirit deserve equal weight for many of us. For example, support to follow the requirements of culture, faith and spiritual values of a lifetime bear great importance. For example, an older muslim woman may step into the mens area of an institution, or a muslim woman may be placed into a mixed sex secure unit. She will be in no position to object as she no longer has access to the values and norms of her lifetime. Well meaning people will support her human right to associate with males freely. This future is absolutely unacceptable for this muslim woman.
Many of us older people have lived lives with extraordinary trauma, where violence was part of our day to day lives. Many mundane things trigger outbursts and over reactions. We have suppressed these outbursts for most of our lives. When dementia progresses, our bodies remember the triggers and respond accordingly, but our brains are broken and unable to suppress or contain these responses resulting in what is expressed as aggression and violence both verbal and physical. We live in fear of living our final years as perpetrators, which feels like the ultimate and ugly irony that in our early years we were victims of violence. It is unacceptable to us, and again we resort to finding off ramps that are not suitable for detailing in this submission.
Finally, I am a personal survivor of a mother and baby home in northern Ireland. I was born in an institution, and it is my greatest and ugliest fear that I will be returned to an institution for my final years when again I am at my most vulnerable. I read the statistics of abuse and neglect in residential age care and this gives me no reassurance. I know that the institutional environment will trigger terrible terrible memories, and that my body will respond. My choices are to be ‘medicated’ at the discretion of a stranger for ‘crowd control purposes’, or NSW can honour me with the human right and dignity to be able to actively contribute to my own advance behaviour support plan, and request restrictive practices that I myself choose. This is not intended to override any emergency provisions in legislation or compete with existing regulations. It is designed to be a third pillar in any restrictive practice authorisation mechanism, for example:
A modern rights forward approach to RP authorisation would involve
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The individual co designs their BSP and RPP
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The individual can consent to specific RP and behaviour support interventions in advance, for specified situations and mundane/ongoing support. This is appropriate in dementia as many situations can be anticipated by the individual and their practitioner
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In emergency or unforeseeable situations, an independent Senior Practitioner would provide authorisation
This model would greatly support the medical practitioners who provide most of the behaviour support and restrictive practice across community dwelling individuals across NSW. Ideally this model, if well supported, would greatly decrease the levels of inappropriate chemical restraint, and drive accountability.
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The Age Care Act specifies that an individual must be provided support with decision making, and this specification also covers behaviour support planning and consent for restraint requirements. I contend that I should be both enabled to actively contribute to my own behaviour support plan at a time when I am still able to do so (in advance) and be supported to do so.
The CRPD mandates that people living with disability - including older people are afforded support to make decisions. It is useful to consider that in this context, the original version of the individual is operationally locked out of this process, another paradox of human rights intersecting with legislative frameworks that are fast becoming obsolete.
Supported Decision Making in Behaviour Support Context
NSW has a significant role in upholding the human right to support decision making for older people and older people living with disability including dementia. A particularly important component of the much needed support sits within the behaviour support landscape in the context of dementia. The present age care act authorisation model is due for imminent review, and it is a useful time for NSW to consider its obligations in the broader behaviour support space, particularly for individuals outside of the government funded age care system.
The Funded Age Care System (Federal)
Whilst support with making a behaviour support plan and consent for restrictive practice sits formally within the Age Care Act, the execution of restrictive practice remains in the legal and regulatory domain of NSW. From the perspective of the individual concerned, it is difficult to see how this split will operationalise to any meaningful or useful degree in keeping me safe. Nevertheless, I see NSW as having a significant role in the monitoring and regulation of the execution of restrictive practices, and this wholly relies on compliance of the restrictive practice with the behaviour support plan.
Unfortunately, recent research that I have been involved with in the role of Associate Investigator reveals that exactly zero percent of BSP’s reviewed were compliant with the modest expectations of the Age Care Quality Standards, this severely compromises the legality and veracity of any restrictive practice executed in NSW. This lapse in quality will place NSW and its older people at significant risk. It is further noted that the ACQSC have a passive regulatory stance on SDM in the behaviour support space, however we do know that consent is rarely sought from the individual, and authorisation from a proxy is the usual way this is managed.
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Whilst federal law expects’ informed consent’ it is unclear where the ‘information’ is held, as based on research, it is not contained in the behaviour support plan.
Recommendation 2
It is incumbent on NSW to review restrictive practice execution in NSW and confirm if the practice is consistent with the plan, and that the plan is actually legal.
Behaviour Support in the wider community in NSW
There is also the very pressing matter of behaviour support in the wider NSW community. Again there is no data on what is happening in this space, however anecdotally, families are reliant on the best efforts of their local medical centre to manage their loved ones. Whilst hammondcare offer a limited behaviour support service in the community, this does not extend to restrictive practices, and families resort to prescription medication from the local medical centre, often based on recommendations from whatsapp groups and reddit forums. It is doubtful if any supported decision making is happening in this space.
Recommendation 3
NSW may wish to consider a better quality (or any) service for individuals outside of the funded age care system requiring behaviour support to co design their behaviour support plan.. This should sit in the medical system, potentially similar to the Admiral Nurse system in the UK. A three tier authorisation model for behaviour support and restrictive practice for older residents of NSW living with dementia, combined with modest support for our medical practitioners would restore a very imbalanced system, and empower our residents to hold the reins of their own future.
Recommendation 4
I recommend that NSW conduct an enquiry into the intersection between behaviour support planning, compliance and execution, and come up with some sort of workable solution to keep our older people safe from predatory and inappropriate restrictive practice.
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At the very least, we should be developing community friendly training and resources around changed and adaptive behaviour so that families and informal carers can support their loved ones in co designing behaviour support plans for their environment. I believe there is some sort of phone line from Dementia Support Australia, but this is wildly insufficient as many people in the community refuse to go onto a database and give their identity to a call centre any more. They also don’t wish to be profiled and have their information and questions recorded as this is offensive and invasive. Of course, these phone lines are not accessible for the people actually living with dementia in the first place, and should be better described as dementia carer support australia and dementia carers australia.
Bridging the Gap
SDM resources for the older people who do not interact with funded services.
Older people living with disability are also entitled to the human rights protections of the CRPD, but they are largely ignored outside of the government funded age care system. This is a significant cohort, although again there is no publicly available NSW specific data for me to quote.
There is little to no quality information or guidance in the public domain to support these families. Good quality information is reserved for the age care industry, with families and care partners left to their best efforts, without any meaningful pathway to accessible education. The medical system is considered to be a legitimate and acceptable avenue for information, and this is the best mechanism to provide support to this cohort, particularly in the domain of behaviour support, however the days of having a family doctor are long gone. Families attend clinics where the attending gp is stressed and busy, and may not have any meaningful training in dementia, let alone adaptive expression, trauma informed care and human rights.
Recommendation 5
Dr Craig Sinclair is leading a research project through UNSW which is developing modest supported decision making training for age care workers, funded through the MRFF. This training is developed both with deep engagement with a lived experience working group as well as significant partner organisations including OPAN. I recommend that a modified version of this
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training be made available to all residents of NSW through the NSW health website, and promoted across communities.
Advance Consent for Restrictive Practice in Dementia Discussion
A pathway for supporting the decisions of our future selves
Summary
People living with dementia in NSW should be able to give advance consent to certain restrictive practices and be supported to contribute to their own current and future behaviour support plans—such as preventing unwanted sexual activity, avoiding intimate environments, or requesting protective restraint if they later become unsafe. mixed‑gender
This is a issue, a supported issue, and a matter of basic fairness.
Currently, NSW via the Age Care Act permits a nominee to give advance human‑rights decision‑makingconsent on someone’s behalf, (the restrictive practice nominee who can be just about anyone restrictive‑practicethe provider can get on the phone) but does not allow the person themselves to do so. This is a
clear inconsistency that undermines the autonomy and dignity of the older person. This discussion centres around the context of dementia specifically, where ‘behaviour’ is reasonably foreseeable, intractable, incurable and eventually terminal. It has been argued that nobody would ever give advance consent to a restrictive practice, but today I offer you myself as an example of someone who definitely wants to give advance consent - for certain restrictive practice in certain circumstances. It is also regularly argued that one cannot give advance consent to an action that is inherently harmful. I would argue that certain self identified restrictive practices are viewed as protective by the individual, and are therefore supportive of their human rights. It is further argued that an individual cannot give advance consent to a future human rights violation. I also argue that a self identified intervention is my human right to request and authorise if it is lawful and aims to prevent harm to myself or others. The actual violation in this example is the privileging of a third party opinion over that of the individual concerned. It has also been argued that an individual cannot provide advance consent as they
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might change their mind. In the context of dementia, I would ask ‘which mind’. I also note that a restrictive practice nominee can give advance consent, but nobody seems to worry if they change their mind. This is the ultimate human rights violation, and the most dispiriting aspect of dementia and our unpersoning.
To give us an element of control of our destiny is not only a compassionate move, it is a rights based move that will return autonomy to the individuals of NSW, and give us the power to determine our own future at least to this small degree, and a strong element of protection from restrictive practise abuse for expediency of providers. This initiative would also greatly support the public guardian system and potentially reduce tribunal intervention, as the genuine voice of the individual would be available.
From a very personal perspective, I am a Catholic wife, mother of 5, grandmother of 8. This is my lifelong identity. I live with ptsd from domestic violence and child abuse, including living through the troubles in Belfast in the 1960’s. We had a car bomb outside our house, my 4 children were at the cinema when a bomb was planted there, I was living in Enniskillen at the time of the Enniskillen bombing and was in Omagh on the day of the Omagh bomb. I am triggered by the most mundane things such as certain music, smells, sounds and appearances. I can easily foresee and already experience the difficulty when these memories are spontaneously relived. My family understands to some extent, however are shielded from the more grotesque aspects of my early life.
My biggest fear living with dementia is the fear of institutionalisation, where I am no longer in charge of my body and the responses driven by a damaged amygdala and limbic system. I dread having the gift of paradoxical or terminal lucidity where Theresa 1.0 returns only to discover that I have been violent, aggressive or unfaithful, and my family is broken due to my activities. I would desperately wish to be able to plan for this foreseeable eventuality through a post diagnostic pathway where I was professionally supported to draft an advance behaviour support and restrictive practice plan that was humane, dignified and person led. I am not alone with my fears and wishes.
- The Problem: This is a Human Rights Paradox Under the Age Care Act, a nominee can give advance consent to restrictive practices for a person with cognitive disability. But the individual while they still have full ability cannot.This creates a fundamental contradiction: decision‑making
The law accepts advance consent when given by someone other than the person, but rejects it when given by the person themselves.
This is inconsistent with:
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- the CRPD’s requirement to respect a person’s will and preferences
- the NSW Government’s own aim to reduce restrictive practices
- the principle of equal recognition before the law NSW’s previous consultation materials in the disability context (that notably excluded age care) confirmed that the purpose of the framework was to reduce and, where possible, eliminate restrictive practices. Allowing people to set their own boundaries in advance is one of the strongest ways to achieve this.
3.The Human Rights Basis
CRPD Article 12 – Equal Recognition Before the Law requires that:
People with dementia retain the expectation of legal capacity at all times. They must be supported to express their will and preferences, including in advance.
CRPD Articles 14, 16 and 17 – Liberty, Freedom from Abuse, and Bodily Integrity
Advance consent protects a person from:
- unwanted sexual contact
- intimate exposure ● violence or aggression (by themselves or others) mixed‑gender ● moral injury when later behaviour contradicts lifelong values
These are core human rights.
Aged Care Act 2024 – Sexual Rights and Consent
The new Aged Care Act recognises:
- the right to sexual expression
- the right to bodily integrity
- the complexity of consent in dementia This means people must be able to their boundaries around intimacy and safety. pre‑state4. Supported Decision‑MakingSupported means enabling a person to express their will and preferences in
the way that works for them. decision‑making An advance directive is simply:
- the person expressing their values while they still can
- a way to carry their voice forward into later stages of dementia
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- a safeguard against unwanted or unsafe situations If a nominee can express the person’s will and preferences on their behalf, then the person must be able to express them directly while they still have capacity.
Otherwise, NSW is not implementing supported is replacing it with
substitute decision‑making—it decision‑making.5. NSW Context and Evidence
NSW’s consultation acknowledges the need for a framework
that reduces restrictive practices and protects people with disability. restrictive‑practices rights‑based
Key NSW submissions reinforce this:
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Dementia Australia emphasises that changed behaviours in dementia must be understood as expressions of unmet need and that approaches are
essential. rights‑based ● Dementia Alliance International stresses that people with dementia must be treated as
whose will and preferences guide all decisions.
● The Ageing and Disability Commission highlights the need for safeguards that protect rights‑holders older people and adults with disability from abuse and uphold their rights.
Allowing advance consent directly supports these goals.
- Why Advance Consent Protects Rights, Not Restricts Them Advance consent is not about giving providers more power. It is about giving the person more power.
It allows a person with dementia to say in advance:
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“I do not want sexual activity of any kind.”
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“I do not want to share intimate spaces with people of a different gender.”
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“If I become violent or sexually disinhibited, I want staff to use the measures to keep me and others safe.” least‑restrictive This protects:
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dignity
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bodily integrity
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lifelong values
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the rights of others
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the person’s own moral identity It also reduces the need for emergency or unplanned restrictive practices.
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- Recommendation NSW should explicitly allow people with dementia to give advance consent to restrictive practices, subject to safeguards, including:
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clear documentation
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regular review
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revocation while the person retains capacity
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oversight and reporting requirements This approach:
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aligns with human rights
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supports autonomy
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reduces restrictive practices
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protects people from harm
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resolves the current legal paradox Recommendation 6 I recommend that NSW consider developing pathways for people living with dementia to be supported to co design their own personal positive behaviour support and restrictive practice plan. This mechanism is rights forward, unique and person led. It would take NSW into the future, reducing administrative burden to the State and providing safety for our residents.
The Advance Care Directive in NSW
After a diagnosis of dementia, the individual is urged to complete an advance care directive. Like most residents of NSW I downloaded the template and sat down to read it, only to find that it comprised a list of the symptoms of dementia. It had tick boxes where I could select whether I found each symptom palatable or unpalatable. All of the symptoms are inevitable, I already live with a few. I could not see the point of completing it, as it would make absolutely no difference at all. I acknowledge that this is a principles based document, presumably designed without the input of anyone with dementia (leading cause of death for women across Australia), however I find that I lack the imagination to translate these principles into anything meaningful.
I reached out to Dementia Australia, who suggested I move towards an advanced care plan in case my capacity was questioned, but they had no advice on how to complete the directive. I reached out to palliative care australia, but they were not funded to assist with this type of enquiry. I am reluctant to go to the medical centre, as it’s impersonal and I am not at my best in medical environments, so I gave up. I have so many questions, but the publicly available information is so vague that I struggle to make any meaning from it. It seems to be written with a view to managing death anxiety or fear, and soothing the reader. It has exactly the opposite effect for many of us.
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I was unable to find meaningful support to make an effective advance care directive in NSW, and I am a pretty resourceful person. I was demoralised to see that dementia symptoms were used as a proxy for quality of life. It is heartbreaking to be honest. I am also not alone in this conclusion. Many of us with dementia in NSW have given up on advance care planning as it is misaligned so deeply with our disease trajectory. These are not principles for us, they are our day to day. We have been pushed to a cliff edge where we have to resort to a do not resuscitate, as there is no support for us to decide anything else.
Recommendation 7
NSW has a serious obligation to update its principles in the advance care directive. Using the symptoms of the leading cause of death in Australia as a proxy for whether life is acceptable or not is negligent and cruel. I strongly recommend a review of the ACP system in NSW to make room for all of us, and provide access to meaningful support to co design appropriate advance care plans.
Palliative Care Planning
After trying and failing with the advance care plan, I thought I could pivot to making an advanced palliative care plan, only to discover there was no such thing for me, even though I live with a terminal illness. This was a bad surprise. Upon enquiring with the NSW palliative care service, I was quickly informed that I was not close enough to death to make an appointment. In the context of dementia, I would contend that being rationed out of the opportunity to plan for my palliative care is a significant human rights breach, and a significant oversight, possibly a result of failure to engage with people living with dementia in service development. This is a matter that is easily fixed, and would provide enormous value to the quality of remaining life to the people of NSW living with dementia. Not only access to palliative care planning, but the support to decide on the care we receive in our last days of life would not only be an Australian first, and show tremendous courage and leadership, it would restore the indignity of having palliative care ‘imposed’ by well meaning others. From a deeply personal perspective, being locked out of palliative care planning has made me consider if a syringe driver in these circumstances comprises a restrictive practice, and whether death with dignity is the same as death with the appearance of dignity. These answers are unavailable to me outside of reddit forums.
Recommendation 8
I recommend that NSW consider providing people living with dementia access to early proactive and supported palliative care planning as a matter of urgency. We have the will and the ability in
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the early to mid stage of the disease to understand and express our end of life wishes, ask the questions we need to ask, and have comfort and certainty that will help us to process and integrate our diagnosis. It’s the right thing to do.