Submission No 17
SUPPORTED DECISION-MAKING IN NSW
Organisation: Dementia Law Network and Young People in Nursing Homes National Alliance
Date Received: 13 March 2026
Submission to the NSW Parliamentary Inquiry into supported decision-making for adults with disability and older people in NSW.
13 March 2026
Submitted by Associate Professor Fiona Kumfor, School of Psychology, University of Sydney and the Dementia Law Network; Professor Nola Ries, Faculty of Law, University of Technology Sydney (UTS) and the Dementia Law Network; Mr Steven Davison, Young People in Nursing Homes National Alliance.
Terms of Reference:
That, pursuant to section 28B(1)(e) of the Ageing and Disability Commissioner Act 2019 (the Act), the Committee conduct an inquiry into and report on supported decision-making for adults with disability and older people in NSW, with particular reference to:
a) the lived experience of people seeking to access appropriate support to make decisions for themselves
b) barriers to implementing models for supported decision-making across legal, financial, health, education, employment and care systems in NSW
c) the distinct experiences of and challenges faced by Aboriginal people and people from culturally and linguistically diverse backgrounds
d) the role and functions of the Ageing and Disability Commission (the Commission) in relation to supported decision-making
e) possible changes to the functions of the Commission, including legislative amendments to the Act, to enhance supported decision-making
f) measures to ensure that substitute decision-making is an alternative approach that is employed in appropriate and limited circumstances
g) other related matters
Executive summary
This submission is jointly provided by the Dementia Law Network and the Young People in Nursing Homes National Alliance. It focuses on people living with dementia, with special attention to young onset dementia. It draws on research, including the recent report Legal Issues for People Living with Young Onset Dementia in Australia (UTS, 2025), which forms part of our submission.
Young onset dementia is a terminal condition with symptom onset before age 65 that affects an estimated 30,000 Australians and is characterised by long diagnostic delays, diverse symptom profiles, and substantial life impacts, including disrupted employment, financial instability, and parenting responsibilities. People with young onset dementia, as with late onset dementia, are often assumed to lack decision-making capacity at, or soon after, diagnosis.
Our research identifies significant barriers to implementing supported decision-making across health, legal, disability and aged care systems. These include: inconsistent and medically-driven approaches to capacity assessment; limited professional training on dementia-specific presentations and supports; fragmented service systems; and the absence of clear legal duties to provide decision-making support. Families commonly report receiving little guidance following diagnosis and face ethically challenging decisions without adequate information, training or systemic support.
To address these gaps, our submission recommends: legislative reform to embed supported decision-making as the preferred and enforceable framework in NSW; dementia-specific training for health and legal practitioners; integrated access to legal and advocacy services for people with dementia and their families; targeted support for individuals with dementia who do not have trusted family or social networks and who face heightened vulnerability to public guardianship; and consideration of innovative volunteer, navigator and/or professional roles to support and, if necessary, make decisions, to ensure that public guardianship is truly a last resort for people with impaired decision-making capacity.
Introduction
People with dementia in NSW, including young onset dementia, experience significant barriers to supported decision-making, leading to premature and avoidable use of substitute decision-making arrangements.
This is a joint submission from the Dementia Law Network and the Young People in Nursing Homes National Alliance. The Dementia Law Network (www.dementialawnetwork.org/) brings together researchers, clinicians, legal practitioners, people living with dementia, their families and the broader community to advance knowledge on issues at the intersection of law and dementia. The Young People in Nursing Homes National Alliance (https://ypinh.org.au/) is the national peak body for younger people living in or at risk of being placed in residential aged care.
Our submission relates to the Terms of Reference:
b) barriers to implementing models for supported decision-making across legal, financial, health, education, employment and care systems in NSW; and
f) measures to ensure that substitute decision-making is an alternative approach that is employed in appropriate and limited circumstances.
Background on Young Onset Dementia
Our submission has a particular focus on supported and substitute decision-making in the context of young onset dementia. While dementia is typically associated with older age, it is estimated that ~30,000 Australians have young onset dementia.
People with young onset dementia experience substantial delays in diagnosis (on average ~3.5 years from onset of symptoms to diagnosis).1 The delay in diagnosis means a delay in individuals accessing health, legal and other support services. This impacts on outcomes including effective legal, financial and care planning, and taking proactive steps to build support networks. In addition, people with young onset dementia are at different life stages to those with late onset
dementia (symptoms after age 65), are typically still in the workforce and often still have children or other dependents living at home. The impact of a dementia diagnosis is, therefore, different for young vs late onset dementia. This includes a range of critical employment, financial, legal and health decisions that have significant implications for the current and future security of the individual and families.
People living with young onset dementia often present with symptoms that differ from the memory problems most commonly associated by the general public with dementia. Many individuals experience early changes in executive functioning, social cognition, communication or behaviour, depending on the dementia subtype. These symptoms can significantly affect judgement, organisation, impulse control, language or the ability to interpret social cues – yet these symptoms are often not recognised or accounted for in capacity assessments. Because supported decision-making relies on identifying and adapting to a person’s specific cognitive profile, a lack of understanding of ‘non-memory’ presentations leads to premature assumptions of incapacity and inconsistent provision of support.
Our submission is informed by our recent report commissioned as part of the Joint Solutions – Young Onset Dementia Project2 which is included as an Appendix to our submission:
Nola Ries, Sascha Callaghan, Kristina Chelberg, Evelyn Rose & Fiona Kumfor, Legal Issues for People Living with Young Onset Dementia in Australia (University of Technology Sydney, 2025). DOI: 10.71741/4pyxmbnjaq.30021721.
This report highlights the following key issues:
1. Incorrect assumptions about capacity
Many people with young onset dementia are assumed to lack decision-making capacity simply because of their diagnosis. This can lead to early guardianship or substitute decision-making arrangements, without first exploring how the person might be supported to participate meaningfully in decisions affecting their life.
2. Shortcomings in capacity assessments
Current capacity assessment practices often fail to recognise the diverse cognitive profiles and support needs of people living with young onset dementia. Capacity assessments are often rushed or conducted in unfamiliar environments and do not include adequate supports that could help the person with dementia to engage meaningfully.
In the context of supported decision-making, accommodations tend to focus on supporting someone with language or communication difficulties, memory loss or sensory changes (i.e., vision and hearing). Typical accommodations which are recognised include: communication and information accessibility (e.g., easy-read formats); time and environment adaptations; and including support structures (e.g., friends and family) to help the individual understand options and consequences. People without support networks are at higher risk of premature substitute decision-making through public guardianship and administration processes.
There are also challenges for legal practitioners in making capacity assessments. This may result in deferral by lawyers to either medical diagnoses as a proxy for capacity, or medical
assessments of capacity that are not always aligned to legal capacity assessments. In the main, this is an artefact of inadequate training of legal practitioners.
Understandably, legal practitioners may be concerned about exposure to criticism that the involvement of a support person in a client’s legal consultation has facilitated undue influence, or even abuse.
There is a clear need for specific training for legal practitioners in administering capacity assessments, understanding different legal tests of capacity, how to appropriately support client decision-making, and the agency of the client to take risk.
Initiatives that connect legal and medical/health professionals, including joint continuing education on capacity assessment and supported decision-making, would enhance consistent practices and improve experiences and outcomes for people living with dementia.
3. Lack of awareness and accommodations for diverse cognitive profiles
Young onset dementia can often present with non-memory symptoms, including executive dysfunction and social cognition. In posterior cortical atrophy, the initial symptoms include impaired visual and spatial processing. It can be difficult, even for health professionals, to identify potential areas where the person may need support, as some cognitive difficulties (e.g., executive dysfunction, social cognition) may be subtle or misinterpreted, unless specifically identified for assessment.
A person with executive dysfunction can have difficulty in planning and organising information, sequencing decisions, cognitive flexibility (i.e., considering alternative options or becoming stuck on one idea), self-regulation and impulsivity.
For people with social cognition impairment, difficulties include understanding the intentions of others, being able to take into account the perspective of another person, and judging trustworthiness (e.g., can be readily swayed and vulnerable to scams).
It can also be difficult to determine the extent the person with social cognition impairment understands the consequences of decisions involving other people (e.g., financial arrangements or care relationships). This means that people with social cognition impairment may make poor financial decisions3, trust individuals who are manipulating them, or misunderstand conflicts of interest.
Combining accommodations to structure decision-making (e.g., presenting one option at a time, making decisions over multiple conversations, providing decision-making scaffolds) together with safeguards to prevent abuse, undue influence and exploitation, are essential to appropriately supporting decision-making in people with executive dysfunction and social cognition impairment.
4. Lack of awareness and reluctance to engage in future planning
Younger people are generally less aware of the need for, and less likely to have, legal planning documents in place, or when an issue requires a legally framed response (e.g., conflict in employment cessation or access to superannuation/insurance). Research (yet to be published) has found a tendency to avoid thinking about the future in people with young onset dementia and
their families 4. This approach ultimately leads to reactive decision-making when a crisis arises - for example when the person with dementia declines and decisions about care need to be made. This avoidance of decision-making may also mean there is inconsistent recognition of ‘will and preferences’ during crises.
5. Fragmented legal and service systems
People with young onset dementia are systematically disadvantaged by current age-based services and systems. There is poor coordination between disability (NDIS), aged care, health and legal services, making it hard for people to access consistent supported decision-making mechanisms and legal advice when needed. This is compounded when people are under public guardianship and/or public trusteeship.
For example, the arbitrary age delineation between accessing NDIS and Aged Care is challenging for people with dementia and their families to navigate. The NDIS system is also poorly designed and equipped to support people with progressive conditions such as dementia. When time-dependent decisions need to be made, public guardians are often unable to facilitate supported decision-making and so substitute decision-making becomes inevitable.
Public guardians often do not have sufficient time or resources to facilitate supported decision-making or even elicit the views of those under guardianship, especially those with complex presentations such as young onset dementia. Frequent changes in personnel mean that relationships between the public guardian and those who know the person best can be frayed or severed. When individuals are unable to engage in supported decision-making, the preferences that the person recorded before they lost capacity, may be lost or deprioritised, especially if they are ‘solos’ (see below).
This means that public guardians are often both first and last resort substitute decision-makers, effectively bypassing consideration of the rights or views of the person under guardianship or their trusted family members.
6. Dominance of substitute over supported decision-making
The legal and policy frameworks in NSW still rely heavily on substitute decision-making models. Supported decision-making continues to be under-implemented in law and practice. While some policy frameworks invoke supported decision-making, there is little legal clarity regarding enforceable obligations to provide support that helps the person make decisions. This issue is amplified by the current NSW Guardianship Act 1987 defaulting to substitute decision-making models.
Legislative reform is overdue to respond to the 2018 NSW Law Reform Commission report on the Guardianship Act 1987, which recommended a new Assisted Decision-Making Act. New legislation would have the benefit of formally enacting supported decision-making, including ensuring that roles with substitute decision-making powers (e.g., enduring power of attorney, enduring guardian) must support decision-making where possible.
It is also essential to address the particular disadvantages and risks faced by ‘solos’—people who, by choice or circumstance, lack trusted family members or close friends to support decision-making or act as substitute decision-makers when needed. These risks are especially
acute in the context of young onset dementia, where relationships may deteriorate in the years preceding diagnosis. In conditions such as frontotemporal dementia, changes in social cognition, behaviour and personality frequently dominate early clinical symptoms and may be misinterpreted as rudeness, thoughtlessness or a lack of empathy. Before a diagnosis is made, these misunderstandings can erode relationships, leaving an ex-partner as the individual’s only remaining connection – someone who may be unwilling to provide support or unsuitable to do so due to conflicts of interest.
‘Solos’ face heightened risks that their needs and views will be ignored, and that decisions will automatically default to a public substitute decision-maker. System-level strategies are needed, such as renewed investments in well-trained and vetted volunteer supporters as well as new navigator or professional roles that people could proactively appoint and prepare as supporters and enduring representatives. Supported by the Australian Research Council, the University of Technology Sydney is leading a new program of research on these innovative models, led by Professor Nola Ries, co-founder of the Dementia Law Network. Training is also needed to ensure that service providers who interact with solos can provide effective decision-making support to minimise public guardianship as a first, rather than last, resort.
7. Training gaps for professionals
Both legal and health professionals lack dementia-specific training in how to implement supported decision-making. This leaves them ill-equipped to assist people to participate in decisions. Our interviews with family members found that people are often told by their health care provider to “get their affairs in order” but carers of people with young onset dementia report that there are limited, if any, resources about what this process entails. Access to qualified legal advice – and effective support to engage in legal planning and decision-making – is a critical component of holistic dementia care. However, “getting affairs in order” is too often framed as an imminent total loss of capacity and the end of life. Legal planning should instead be reframed in an empowering way – preparing for ‘the rest of life’, not the ‘end of life’5 – that emphasises a right to supports for decision-making.
Evidence suggests that there is a prevailing ‘medicalised’ approach to determining whether a person has decision-making capacity. This results in capacity being a binary assessment universally linked to a particular diagnosis, rather than looking closely at a person’s situation and areas where they can make decisions and where they need assistance. This is partly caused by the limited understanding across health professions that a diagnosis of dementia does not preclude a person from participating in decision-making. This lack of knowledge stems from inconsistent training regarding capacity across institutions, states, disciplines and specialities. Even recently trained clinicians may lack sufficient understanding of the legal definition of capacity.
8. Ethical challenges
Our interviews with carers and service providers highlighted the real-world challenges in implementing supported decision-making. Families and professionals face difficult ethical judgements about how to weigh a person’s apparent present preferences, against broader life goals, practicality and safety.
As an example, one of our interviews with carers revealed:
“There’s a huge disconnect between what the law says about capacity and what happens in real life. I’m meant to let him [husband] make his own decisions - but I’m also responsible if things go wrong. No one helps you walk that line.”
– Carer of a person with young onset dementia
Our research also uncovered an over-use of capacity assessments to challenge decisions that may be perceived as risky, with inadequate understanding of the ‘dignity of risk’, or resources about how to support a person whose decision involves a degree of risk, regardless of how small. Possible conflict between duty of care of health care providers and the person’s ability to make decisions that are not risk-free is an additional complexity which warrants consideration.
To promote decision-making in young onset dementia we recommend the following actions:
Recommendations
- A public campaign to improve awareness of the heterogeneity of dementia presentations and subtypes (e.g., frontotemporal dementia, dementia with Lewy bodies, posterior cortical atrophy, young onset Alzheimer’s dementia).
- Training for health professionals on capacity, the decision-specific nature of capacity, how and when assessments of capacity should be undertaken, as well as training on effective adaptations and measures to ensure people with dementia can engage in decision-making with support. This training can be modelled on material available for people with intellectual disability.
- Training for legal practitioners to promote the attributes of a dementia-capable practitioner6, based on models that have been positively evaluated in pilot testing7, and involving people living with dementia.
- Expanded legal and advocacy services integrated within healthcare systems.
- Focused research on supported decision-making in young onset dementia, non-Alzheimer’s dementia syndromes (e.g., frontotemporal dementia) and consumer experiences of assessments of decision-making ability and supported decision-making.
- Update to the Guardianship Act 1987 to:
- Require evidence that reasonable decision-making supports are offered before guardianship is considered.
- Prioritise the person’s will and preferences over a ‘best interests’ approach and require that those preferences be followed unless doing so creates serious risk of harm.
- Clearer emphasis on capacity being decision-specific.
- A specific provision that confirms that a person should not be considered as lacking capacity solely because they have a disability.
- Consideration of innovative volunteer, navigator and/or professional roles to support and, if necessary, make decisions, to ensure that public guardianship is truly a last resort for people with impaired decision-making capacity.
These reforms would help ensure that people with young onset dementia in NSW can exercise their rights, maintain autonomy for as long as possible, and avoid unnecessary or premature guardianship.
References
- Loi SM, Goh AMY, Mocellin R, et al. Time to diagnosis in younger-onset dementia and the impact of a specialist diagnostic service. Int Psychogeriatr 2022; 34(4): 367-75.
- Blackwood A, Davison S, Morkham B. (2025) Time won’t wait… The Joint Solutions Young Onset Dementia Project Final Report. Young People In Nursing Homes National Alliance. https://ypinh.org.au/wp-content/uploads/2025/08/The-Joint-Solutions-Young-Onset-Dementia-Project-Final-Report.pdf
- Kumfor F, Wei G, Ries N, et al. Examining the propensity and nature of criminal risk behaviours in frontotemporal dementia syndromes and Alzheimer’s disease. Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring 2024; 16(2): e12577.
- Lai M. How people with young-onset dementia living in the community in Australia, and their families, make decisions and plan for the future: University of Sydney; 2020.
- Yapp, G., Sinclair, C., Kelly, A., Williams, K., Amgarth-Due, I., & Agar, M. (2018). Planning for the rest-of-life, not end-of-life: Reframing advance care planning for people with dementia. In Dementia as social experience (pp. 134-156). Routledge.
- Ries, N., & Donner, K. (2024). Dementia Capability for the Legal Profession (UTS), https://opus.lib.uts.edu.au/handle/10453/176021.
- Ries, N., & Johnston, B. (2025). Dementia training for lawyers: results from a pilot evaluation study and implications for building dementia capability in the legal profession. Psychiatry, Psychology and Law, 32(2), 153-174.
This submission attached the following document: Legal Issues for People Living with Young Onset Dementia in Australia