Becoming a dementia capable legal practitioner.
The attibutes of a dementia-capable legal practitioner are grouped into five areas: knowledge; professionalism; legal rights and risks; communication; and capability. Find out more about each of these attributes by clicking on each button in the graphic below.
Introduction
Why is dementia capability relevant to the legal profession?
The Australian population is ageing¹ and more people are living longer with chronic diseases, including conditions that affect their cognitive abilities. Dementia is of particular concern as a major cause of disability. Over 480,000 people in Australia have a dementia diagnosis, including nearly 30,000 people under the age of 65 with younger onset dementia. The prevalence of dementia is expected to triple by 2050. Most people with a diagnosis – around 70 percent – live at home.² In addition to the number of people living with a diagnosis, around 1.6 million people in Australia are carers of someone with dementia.
A diagnosis of dementia is a common prompt for people to seek legal advice to organise their affairs and put plans in place for future financial, health and lifestyle decisions.³ The diagnosis alone does not preclude people from participating in legal processes or accessing their rights. Australian clinical practice guidelines for the care of people with dementia recognise the importance of legal advice following a diagnosis, especially for advance planning purposes.⁴ National guidelines for Memory and Cognition Clinics recommend that clinics refer clients to a range of services with ‘dementia expertise’, including legal services.⁵
Developing dementia capability is important for the legal profession. This term describes a practitioner whose knowledge, skills, attitudes and behaviours enable them to work effectively with people living with dementia, those who support them, as well as other clients seeking to plan ahead for their future.
¹ Australian Institute of Health and Welfare, ‘Older Australians, Demographic Profile’, Australian Institute of Health and Welfare (2021) https://www.aihw.gov.au/reports/older-people/older-australians/contents/demographic-profile
² Dementia Australia, ‘Dementia Statistics - Key Facts and Statistics’ (January 2022) https://www.dementia.org.au/statistics
³ Nola M Ries et al, ‘How Do Lawyers Assist Their Clients With Advance Care Planning? Findings From a Cross-Sectional Survey of Lawyers in Alberta’ (2018) 55(3) Alberta Law Review 683; Karen A Sullivan et al, ‘Public Awareness of Legal Decision-Making Capacity and Planning Instruments in Dementia: Implications for Health Care Practitioners’ (2023) 30(4) Psychiatry, Psychology and Law 565.
⁴ Cognitive Decline Partnership Centre, Clinical Practice Guidelines and Principles of Care for People with Dementia (Guideline Adaptation Committee, 2016).
⁵ Australian Dementia Network, ‘ADNeT Memory and Cognition Clinic Guidelines: National Service Guidelines for Specialised Dementia and Cognitive Decline Assessment Services in Australia’ (2021) 63, 67 https://www.australiandementianetwork.org.au/initiatives/memory-clinics-network/adnet-memory-and-cognition-clinic-guidelines/
The importance of legal planning
Dementia capability in the legal profession has relevance to a range of clients, not just people who have a dementia diagnosis. Developing and applying the attributes of dementia capability can improve access, inclusion and person-centred services for all clients.⁶
All adults have legal rights to plan ahead for future incapacity and the end of life. Many Australians make wills and appoint decision-makers, such as an enduring financial power of attorney. Advance care planning includes appointing a legally authorised decision-maker to be involved in future medical treatment decisions. Effective legal planning may help to prevent financial exploitation, unwanted medical care and estate disputes and reduce stress and conflicts around substitute decision-making.⁷
Dementia is a major cause of disability, particularly among older people. It is the leading cause of death for women in Australia, and the second leading cause of death for men. This means that, for many people, legal planning for future illness, loss of capacity and the end of life means planning for the risk of dementia.
The concept of dementia capability is a lens to focus attention on the importance of legal planning for all adults. Legal practitioners can encourage earlier engagement with advance planning for their clients. Doing so will ensure clients have plans in place that safeguard their preferences and interests and help to prevent problems in the event of developing dementia or another condition that affects their capacity.
⁶ S Rahman & K Swaffer, ‘Assets-Based Approaches and Dementia-Friendly Communities’ (2018) 17(2) Dementia 131, 132.
⁷ Amy Waller, Rob Sanson-Fisher, Nola Ries & Jamie Bryant, ‘Increasing Advance Personal Planning: The Need for Action at the Community Level’ (2018) 18 BMC Public Health 606.
A note on the intention of this document
This document is to be understood in the context of a legal practitioner’s ethical and professional responsibilities. It does not replace existing guidelines for the legal profession, such as practice guides on client capacity or elder abuse. Rather, the intent is to complement existing resources.
In particular, the document complements the National Dementia Action Plan 2023-2033. This Plan is a joint federal, state and territorial initiative that sets out priority areas to improve services, policies and systems for people living with dementia, their carers and families.
One of the objectives of the National Plan is to increase dementia capability in workforces and professions. This document sets out attributes that focus on the legal profession. The document is not a tick box exercise. Rather it encourages reflection on current knowledge, skills attitudes and behaviours, then action to continuously develop and strengthen those attributes.
Other terms relevant to dementia capability
Dementia inclusive:
This term is used in the National Dementia Action Plan to describe to a ‘society where people living with dementia and their carers can fully participate, feel safe and empowered to live independently with respect and dignity, free from stigma and discrimination.’⁸
Dementia positive:
This term describes ‘positivity towards dementia with an intentional emphasis on strength finding, manifesting through attitudes, beliefs, communication, and behaviors.’⁹ Being dementia positive can be demonstrated in practice in various ways. For example:
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Using respectful language when communicating with and about people living with dementia.
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Applying strategies that enable clients to express their wishes and make decisions about what is important to them.
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Encouraging legal planning in an empowering way that gives people control over what matters to them, rather than giving control away to others.
Dementia friendly:
This term describes communities and places where people living with dementia are supported to live a high quality of life with meaning, purpose and value.’¹⁰ For example, the Dementia Friendly Community Program is an initiative of Dementia Australia funded by the Commonwealth government.¹¹ It supports local dementia alliances and helps organisations and businesses be more inclusive of people with dementia. Dementia capable professions play an essential role in dementia friendly communities.¹²
ATTRIBUTES
Note: This term refers to a person’s characteristics, qualities or features in their professional role. These attributes should be understood within the professional boundaries of a legal practitioner; they do not imply medical knowledge or acting outside a lawyer’s professional role.
⁸ National Dementia Action Plan. See also World Health Organization, Towards a Dementia-Inclusive Society - WHO toolkit for dementia-friendly initiatives (Geneva: World Health Organization, 2021) https://www.who.int/publications/i/item/9789240031531
⁹ S Lin & F Lewis, ‘Dementia Friendly, Dementia Capable, and Dementia Positive: Concepts to Prepare for the Future’ (2015) 55(2) Gerontologist 237.
¹⁰ See https://www.dementia.org.au/dementia-friendly-communities
¹¹ See https://www.dementiafriendly.org.au/about-us
¹² C Hebert & K Scales, ‘Dementia Friendly Initiatives: A State of the Science Review’ (2019) 18(5) Dementia - 1858, 1859. See also S Lin & F Lewis, ‘Dementia Friendly, Dementia Capable, and Dementia Positive: Concepts to Prepare for the Future’ (2015) 55(2) Gerontologist 237.
KNOWLEDGE
Improving knowledge about dementia across professions – and society generally – is essential to reducing stigma and improving access to services and quality of life for people living with dementia and those who support them. There are many misconceptions about dementia that lead to an emphasis on deficits rather than strengths.
A dementia capable legal practitioner:
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Knows current information about dementia relevant to legal practice, including being aware that:
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Dementia is a broad term that encompasses a number of progressive conditions that affect brain functioning.¹³
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Dementia involves a range of signs and symptoms that may involve changes in cognitive abilities, behaviour, communication and personality. Dementia is not only or always about memory loss.
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Cognitive and other changes will vary for each individual; a person-centred approach is required to identify and meet each client’s unique needs and abilities, which will vary depending on their diagnosis and symptoms.
¹³ Over 100 diseases may cause dementia. Alzheimer’s disease is the most common dementia diagnosis. Other diagnoses include vascular dementia, dementia with Lewy bodies and frontotemporal dementia.
LEGAL RIGHTS AND RISKS FOR THE CLIENT
Providing comprehensive advance planning advice is a key aspect of being a dementia capable legal practitioner. Taking steps to prevent, identify and respond to situations of abuse and exploitation is also important when working with clients with dementia, especially those experiencing multiple sources of vulnerability.
A dementia capable legal practitioner:
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Provides comprehensive advice on advance planning to enable clients to maintain the maximum possible level of independence, choice and control in their lives, which may include:
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planning for estate matters, such as making a will and an enduring power of attorney;
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planning for future health-related decisions, such as:
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appointing a healthcare decision-maker;
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informing clients of the right to make an advance care directive, and encouraging clients to seek medical guidance on making an advance care directive, as necessary;
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planning for future accommodation needs, such as contractual agreements for family or residential care arrangements;
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planning for other decisions with legal implications, such as driving cessation (eg, explaining the law relevant to driver licensing for people with medical conditions);
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planning to take part in medical research, such as making an advance research directive, signing up to a dementia research registry, and/or body donation for medical science after death.
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Uses preventive strategies to reduce a client’s risk of exploitation and abuse, for example:
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advising on the prudent selection of support persons (informal and formal) and enduring representatives;
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careful drafting of legal documents, including instruments to appoint representatives for the client;
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providing information on the legal role of appointed representatives, including responsibilities and limits on their authority.
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Knows how to identify potential situations of exploitation or abuse and is able to respond appropriately to such situations, with awareness of the different types of abuse, including:¹⁴
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emotional, psychological or social abuse;
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financial abuse;
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physical abuse;
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sexual abuse;
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neglect;
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coercive control.¹⁵
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Recognises the needs of diverse persons with dementia, or at risk of dementia, and is able to provide relevant legal advice and assistance, including for:
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people with younger onset dementia (under age 65), who may have legal issues concerning employment, family relationships and National Disability Insurance Scheme (NDIS) supports;
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people from culturally and linguistically diverse backgrounds;
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Aboriginal and Torres Strait Islander people, who have rates of dementia three to five times higher than non-Indigenous Australians;
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LGBTIQ+ people;
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people living in residential aged care facilities;
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people who do not have trusted family members or friends available to take on decision-making roles;
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people in rural and remote areas;
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people with other vulnerabilities (eg, people with co-existing disabilities; people without secure housing).
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Is aware of and has professional networks and referral pathways to relevant services and programs. These may include networks and pathways to:
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suitable health professionals to seek formal assessments of capacity, when necessary;
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professionals who may assist in working effectively with a client with dementia (eg, speech pathologist input for a client with communication difficulties) or provide guidance on matters that may assist their legal planning (eg, financial planner);
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agencies or organisations to whom a client may be referred to address specific issues, such as disclosures of elder abuse or complaints about quality of aged or disability care services.
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¹⁴ For definitions and examples, see https://www.compass.info/elder-abuse/understanding/defining-elder-abuse#section-abuse-types-explained
¹⁵ or more information, see https://www.compass.info/featured-topics/coercive-control/understanding-coercive-control-as-elder-abuse/#section-what-is-coercive-control. Coercive control ‘describes patterns of behaviour where a person seeks to control and manipulate the life of another person.’
CAPACITY
Dementia affects each person in a different way. A diagnosis of dementia should not, on its own, give rise to an assumption of incapacity. However, being able to deal appropriately with capacity issues is a key attribute of a dementia capable legal practitioner.
A dementia capable legal practitioner:
Understands principles of decision-making capacity, for example:
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Capacity is decision-specific.
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Capacity may fluctuate over time.
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Capacity may be influenced by a range of factors, such as acute illness, changes in medication and environmental conditions, such as time of day, noise and other distractions.
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Capacity can be enhanced with appropriate supports.
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Identifies when client capacity may be in question and carries out appropriate steps to assess client capacity, which may include seeking an assessment from a suitable health professional.
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Applies strategies that enhance capacity and support decision-making for people with dementia. Strategies may include:
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Effective meeting set-up (eg, attentive to client’s preferred time of day, sending an agenda and other relevant material ahead of time to help the client be prepared);
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Appropriate physical environment (eg, good lighting, uncluttered to avoid visual distraction, quiet and away from background noise)
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Effective communication strategies during the meeting (eg, speaking in a conversational manner, addressing one topic at a time, using plain language to explain legal concepts or terms);
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Giving the client time to consider options and make decisions;
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Appropriate involvement of the client’s support person, in line with the practitioner’s ethical obligations.
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Recognises and responds appropriately when they cannot act for a person due to a lack of capacity to give instructions.
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COMMUNICATION
Communication is central to the lawyer-client relationship and is of heightened importance for a dementia capable practitioner. People living with dementia commonly experience changes in communication, which may include changes in reading and writing skills and difficulties in finding words.¹⁶ Effective and respectful communication is vital when working with a client with dementia, especially to support self-expression, capacity and freedom to make choices.
A dementia capable legal practitioner:
Communicates effectively with clients, including:
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Seeks and is guided by the client’s preferences for effective communication;
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Explains information in plain language and checks for understanding (eg, by asking open ended questions);
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Listens to and treats clients with empathy;
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Elicits the client’s will and preferences;
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Focuses on communicating with the client in situations where a support person is involved;
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Maintains a written record of communication, which is shared with the client.
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Uses respectful communication, including:
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Uses inclusive and non-stigmatising language when communicating with or about people with dementia;
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Is guided by resources such as Dementia Australia’s Language Guidelines¹⁷ and the person-centred language guide from the Canadian Alzheimer’s Society.¹⁸
ADVOCACY
The legal profession has a powerful advocacy role in society,
especially in promoting access to justice and reforms to improve
the law. Legal and policy frameworks help to create and regulate
societal conditions that support physical and mental health and
reduce the risk factors for dementia.¹⁹
The profession maintains high standards of conduct and ethical
practice and also attends to the wellbeing of practitioners.
A dementia capable legal practitioner:
Considers, and when appropriate and possible, acts on
opportunities to advocate for changes to laws, legal systems
and practices that:
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promote and protect the rights of people living with dementia;
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support prevention and reduce the risk factors for dementia, including strategies that reduce dementia risks for members of the profession (eg, promoting healthy lifestyles and wellbeing among practitioners).
¹⁹ Dementia risk factors relate to diet, exercise, sleep, smoking, alcohol use, heart health, high blood pressure, diabetes, social interaction, cognitive stimulation, depression, hearing impairment, head injury and exposure to air pollution. See https://www.dementia.org.au/risk-reduction.
RESOURCES
Dementia Australia is a source of up-to-date information and resources about dementia: https://www.dementia.org.au
Dementia Australia Language Guidelines: https://www.dementia.org.au/sites/default/files/resources/dementia-language-guidelines.pdf
Canadian Alzheimer’s Society person-centred language guide:
Law Council of Australia, Best Practice Guide for Legal Practitioners on Assessing Mental Capacity (June 2023)
Law Council of Australia, Best Practice Guide for Legal Practitioners in Relation to Elder Financial Abuse (September 2020)
Compass – Guiding Action on Elder Abuse, https://www.compass.info,
including guidance on:
Courses for further learning
UTS Open, dementia-focused short courses for legal professionals:
University of Tasmania, Wicking Dementia Research and Education Centre offers free online courses:
Dementia Training Australia – Communication Strategies, https://dta.com.au/online-courses/the-view-from-here-racf/communication-strategies-racf
ATTRIBUTES OF A DEMENTIA CAPABLE LEGAL PRACTITIONER
Note: This statement of attributes was developed as part of a research project led by Nola Ries and Karen Donner, Faculty of Law, University of Technology Sydney. Legal practitioners from across Australia, people living with dementia and support persons of someone with dementia took part in this project. Participants shared their views and experiences in a process that led to the development of this statement of the attributes of a dementia capable legal practitioner. Illustrative quotations from participants are highlighted throughout this document.
Acknowledgements
We thank everyone who contributed their time and expertise to this project. All views and opinions expressed are those of each individual. The people identified here gave their permission to be publicly acknowledged and thanked for their contributions.
We are grateful to Step Up for Dementia Research and Dementia Australia’s Dementia Advocates Program for their invaluable assistance in helping to connect the research team with people living with dementia and care supporters.
Project advisory group
Ilona Balint, Dementia Advocate
Imelda Gilmore, Dementia Advocate
Stephen Grady, Dementia and Aged Care Advocate
Hayley Bennett, Barrister
Anthea Kennedy, Accredited Specialist in Wills and Estates
Deborah Parker, Professor of Nursing Aged Care (Dementia) and Director UTS Ageing Research Collaborative, University of Technology Sydney
Legal practitioners
Lauren Absalom, NSW Trustee & Guardian and the Law Society of New South Wales
Rebecca Anderson, ADA Law, Queensland
Lisa Barca, Principal Lawyer in Wills & Estates & Elder Abuse, Coleman Greig Lawyers, New South Wales
Jennifer Brook, Director, Sedsman Legal, and Member of the Succession and Elder Law Committee of the Law Society of South Australia
Darryl Browne, , New South Wales
Tanya Chapman, Baker Love Lawyers, New South Wales
Rod Genders, Law Council of Australia - Elder Law and Succession Law Committee, Law Society of South Australia - Succession Accredited Specialist in Wills and Estates and Elder Law Committee, Society of Trust and Estate Practitioners - South Australia
Legal Aid NSW Elder Abuse Service
Jarrad McCarthy, NSW Trustee and Guardian
Karina Penfold, New South Wales
Megan Penno, Tasmania
Michael Perkins, Co-founder and Principal Lawyer, Autonomy First Lawyers, New South Wales
Bernadette Radburn, New South Wales
Dominique Saunders, Saunders Legal: Health Ethics Law Diversity, Victoria
Clare Sunderland, Johnstone & Reimer Lawyers, Victoria
Alison Wiss, McMullen Lawyers, Past Chair of the Elder Law Committee - Law Society of Tasmania, Board Member of COTA (Council of the Ageing), Tasmania
People with dementia and support persons/carers
Dennis Frost, Dementia Advocate, Vice Chair Dementia Australia Advisory Committee
Gerard Lee
Mithrani Mahadeva
Leone McGovern
Kerry Morrison
Claire Powell
Bobby Redman, Chair, Dementia Australia Advisory Committee
Frances Short
Rhonda Stewart
Andrea A Tesoriero
Funding acknowledgements
We acknowledge funding from the UTS Disability Access and Inclusion Fund that supported the development of this website. The research project to develop the statement of attributes was funded by a grant received from the Australian Community of Practice in Research in Dementia (ACcORD). The ACcORD is supported by the National Health and Medical Research Council via a Dementia Research Team Grant (APP1095078).