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Abstract
A growing number of Australians live with, or are at risk for, dementia. A diagnosis is a common prompt for people to seek legal advice to plan for their future. It is important that lawyers are equipped with up-to-date knowledge and resources to work effectively with clients in these circumstances. This article reports on a research project that involved the delivery of dementia-focused online training for lawyers and the piloting of an evaluation strategy. Legal practitioners in two Australian states were recruited for this pilot study. Wills/estates and elder law were common areas of practice. Data were collected through in-course activities (eg polls, discussion posts) and surveys administered at course completion and at four-month follow-up. The findings were positive both in terms of the suitability of the training and the feasibility of the evaluation model. This study also contributes insights into the role of the legal profession and lawyering practices in advancing the objectives of Australia’s National Dementia Action Plan.
Acknowledgements
The authors thank all participants who generously contributed their time to this project.
Notes
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 Gill Livingston et al, ‘Dementia Prevention, Intervention, and Care: 2020 Report of the Lancet Commission’ (2020) 396(10248) Lancet 413.
4 Australian Government, Department of Health and Aged Care, ‘National Dementia Action Plan – Public Consultation Paper’ (November 2022) 13 <https://consultations.health.gov.au/aged-care-division/ndap-public-consultation/>.
5 Shih-Yin Lin and Frances Marcus Lewis, ‘Dementia Friendly, Dementia Capable, and Dementia Positive: Concepts to Prepare for the Future’ (2015) 55(2) Gerontologist 237.
6 Soo Borson and Joshua Chodosh, ‘Developing Dementia-Capable Health Care Systems: A 12-Step Program’ (2014) 30(3) Clin Geriatr Med 395; Soo Borson, ‘Dementia-Capable Healthcare: One Step Closer’ (2019) 67(3) J Am Geriatr Soc 419.
7 Catherine A Hebert and Kezia Scales, ‘Dementia Friendly Initiatives: A State of the Science Review’ (2019) 18(5) Dementia 1858.
8 Jamie Bryant et al, ‘Experiences and Preferences for Advance Care Planning Following a Diagnosis of Dementia: Findings from a Cross-Sectional Survey of Carers’ (2023) 18(6) PLoS ONE e0286261; 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 Rev 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) Psychiatr Psychol Law 565.
9 Cognitive Decline Partnership Centre, ‘Clinical Practice Guidelines and Principles of Care for People with Dementia’ (Guideline Adaptation Committee, 2016).
10 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/>.
11 Tacara Soones et al, ‘“My Older Clients Fall Through Every Crack in the System”: Geriatrics Knowledge of Legal Professionals’ (2014) 62(4) J Am Geriatr Soc 734.
12 Nola M Ries, ‘Elder Abuse and Lawyers’ Ethical Responsibilities: Incorporating Screening into Practice’ (2018) 21(1) Legal Ethics 23; Lise Barry, ‘“He Was Wearing Street Clothes, Not Pyjamas”: Common Mistakes in Lawyers’ Assessment of Legal Capacity for Vulnerable Older Clients’ (2018) 21(1) Legal Ethics 3; Craig Sinclair et al, ‘Professionals’ Views and Experiences in Supporting Decision-Making Involvement for People Living with Dementia’ (2021) 20(1) Dementia 84; Perla Werner and Israel Doron, ‘Alzheimer’s Disease and the Law: Positive and Negative Consequences of Structural Stigma and Labeling in the Legal System’ (2017) 21(11) Aging Mental Health 1206.
13 David M Godfrey, ‘Developing Dementia-Friendly Communities and Dementia-Capable Professionals’ (2015) 36(3) Bifocal 5; Nola M Ries, Briony Johnston and Shaun McCarthy, ‘Legal Education and the Ageing Population: Building Student Knowledge and Skills Through Experiential Learning in Collaboration with Community Organisations’ (2016) 37(1) Adelaide Law Rev 495; Perla Werner and Israel Doron, ‘The Legal System and Alzheimer’s Disease: Social Workers and Lawyers’ Perceptions and Experiences’ (2016) 59(6) J Gerontol Soc Work 478.
14 James H Pietsch, ‘Becoming a “Dementia-Capable” Attorney – Representing Individuals with Dementia’ (2015) 19(13) Hawaii Bar Rev 1.
15 Tammy C Hoffman et al, ‘Better Reporting of Interventions: Template for Intervention Description and Replication (TIDieR) Checklist and Guide’ (2014) 348 BMJ g1687.
16 Pietsch (n 14).
17 Guideline Adaptation Committee (n 9).
18 Ibid; Australian Government, Department of Health, ‘National Framework for Advance Care Planning Documents’ (2021) 36 <https://www.health.gov.au/sites/default/files/documents/2021/06/national-framework-for-advance-care-planning-documents.pdf>; The Law Society of New South Wales, ‘When a Client’s Capacity is in Doubt: A Practical Guide for Solicitors’ (2016) 1, 19–22 (app C).
19 Anne Moehead et al, ‘A Web-Based Dementia Education Program and Its Application to an Australian Web-Based Dementia Care Competency and Training Network: Integrative Systematic Review’ (2020) 22(1) J Med Internet Res e16808. These features align with adult learning principles that are endorsed for continuing legal education: see eg Barbara A Bichelmeyer, ‘Best Practices in Adult Education and E-Learning: Leverage Points for Quality and Impact of CLE’ (2006) 40(2) Valparaiso Univ Law Rev 509.
20 For example, in New South Wales, Rule 6.1 of the Legal Profession Uniform Continuing Professional Development (Solicitors) Rules 2015 under the Legal Profession Uniform Law (NSW) requires all practitioners to complete at least 10 CPD points each year. The Rules requires a minimum of 1 CPD point in designated areas, including ethics and professional responsibility and professional skills, which are focus areas in the dementia courses.
21 See eg Julia Lühnen, Ingrid Mühlhauser and Tanja Richter, ‘Informed Decision-Making with and for People with Dementia: Developing and Pilot Testing an Education Program for Legal Representatives (PRODECIDE)’ (2019) 18(6) Dementia 2303, which involved 12 participants who were professionals serving as legal representatives; Shelley Cobbett et al, ‘On-Line Dementia Education: Cultivating Nursing Students’ Comprehension, Application and Critical Thinking Skills’ (2016) 39(1) Perspectives 7, which involved 23 nursing students in the intervention group that completed online dementia training; and Joy W Douglas, Christine Ferguson and Beth Nolan, ‘The Feasibility and Acceptability of a Dementia Care Training Program for Registered Dietitian Nutritionists’ (2022) Gerontol Geriatr Educ, DOI: 10.1080/02701960.2022.2105841, which involved 20 dietetics professionals in a training and follow-up survey.
22 ‘The Kirkpatrick Model’, Kirkpatrick Partners, LLC. <https://www.kirkpatrickpartners.com/the-kirkpatrick-model/>.
23 Claire A Surr and Cara Gates, ‘What Works in Delivering Dementia Education or Training to Hospital Staff? A Critical Synthesis of the Evidence’ (2017) 75 Int J Nurs Stud 172.
24 K DeSouza, SW Pit and A Moehead, ‘Translating Facilitated Multimodal Online Learning into Effective Person-Centred Practice for the Person Living with Dementia among Health Care Staff in Australia: An Observational Study’ (2020) 20(1) BMC Geriatr 33.
25 Michael J Annear et al, ‘Dementia Knowledge Assessment Scale (DKAS): Confirmatory Factor Analysis and Comparative Subscale Scores among an International Cohort’ (2017) 17(1) BMC Geriatr 168.
26 Australian Government, Department of Health, ‘National Framework for Advance Care Planning Documents’ (n 18).
27 By comparison, an online dementia course for health professionals (international medical graduates and practice nurses) had 33 people consent to participate; 27 (82%) completed the online course and 6 either withdrew or did not complete: see Michael W Bentley et al, ‘Behavioural Change in Primary Care Professionals Undertaking Online Education in Dementia Care in General Practice’ (2019) 25(3) Austr J Prim Health 244.
28 Three participants selected the option of ‘Other’ for this question. These other areas included: ‘Provide advice and deal with matters re victims of crime, property law, guardianship, NDIS, personal injury, disability, aged care, admin law’; ‘Disability, Personal Injury, Medical Negligence, No-fault compensation, NDIS, Aged Care’; and ‘Trust and Estate practitioner, Succession and Legal Planning’.
29 Guideline Adaptation Committee (n 9). The 10 Principles of Dignity in Care are: zero tolerance of all forms of abuse; support people with the same respect you would want for yourself or a member of your family; treat each person as an individual by offering a personalised service; enable people to maintain the maximum possible levels of independence, choice and control; listen and support people to express their needs and wants; respect people’s privacy; ensure people feel able to complain without fear of retribution; engage with family members and carers as care partners; assist people to maintain confidence and a positive self-esteem; and act to alleviate people’s loneliness and isolation.
30 Dementia Australia, ‘Dementia Language Guidelines’ (2022) <https://www.dementia.org.au/resources/dementia-language-guidelines>.
31 Annear et al (n 25).
32 The online course summarised research data from studies that included: Amy Waller et al, ‘Are Older and Seriously Ill Inpatients Planning Ahead for Future Medical Care?’ (2019) 19(1) BMC Geriatr 212; Jamie Bryant et al, ‘Inadequate Completion of Advance Care Directives by Individuals with Dementia: National Audit of Health and Aged Care Facilities’ (2022) 12(e3) BMJ Support Palliat Care e319; Sarah Jeong et al, ‘“Planning Ahead” among Community-Dwelling Older People from Culturally and Linguistically Diverse Background: A Cross-Sectional Survey’ (2015) 24(1–2) J Clin Nurs 244; Ben P White et al, ‘Prevalence of Advance Care Directives in the Community: A Telephone Survey of Three Australian States’ (2019) 49(10) Int Med J 1261; Karen M Detering et al, ‘Prevalence and Correlates of Advance Care Directives among Older Australians Accessing Health and Residential Aged Care Services: Multicentre Audit Study’ (2019) 9(1) BMJ Open e025255.
33 This discussion activity followed a summary of literature on older people who do not have trusted legal representatives: see eg Andrew B Cohen et al, ‘Older Adults without Desired Surrogates in a Nationally Representative Sample’ (2021) 69(1) J Am Geriatr Soc 114.
34 The critiques of advance care planning were consolidated from relevant literature, including: Mark I Friedewald and Peter A Cleasby, ‘Advance Care Directive Documentation: Issues for Clinicians in New South Wales’ (2018) 42(1) Austr Health Rev 89; R Sean Morrison, ‘Advance Directives/Care Planning: Clear, Simple, and Wrong’ (2020) 23(7) J Palliat Med 878; Nadia Moore et al, ‘Doctors’ Perspectives on Adhering to Advance Care Directives when Making Medical Decisions for Patients: An Australian Interview Study’ (2019) 9(10) BMJ Open e032638; Laura I van Dyck et al, ‘Understanding the Role of Knowledge in Advance Care Planning Engagement’ (2021) 62(4) J Pain Symptom Manage 778.
35 Department of Health, ‘National Framework for Advance Care Planning Documents’ (2021). The recommendations include: raising clients’ awareness of their rights to engage in advance care planning; using appropriate templates for ACP documents; encouraging clients to use values-based languages to express their wishes; ensuring that documents do not have conflicting directions; encouraging clients to discuss their wishes with key others; informing clients that advance care planning documents can be uploaded to My Health Record; reminding clients to review and update their advance care planning documents as necessary; and directing clients to resources that can help them and key others.
36 The Law Society of New South Wales, ‘When a Client’s Capacity is in Doubt’ (n 18).
37 Ibid (app A); Law Council of Australia, ‘Best Practice Guide for Legal Practitioners on Assessing Mental Capacity’ (June 2023), https://lawcouncil.au/resources/policies-and-guidelines/best-practice-guides-for-legal-practitioners-in-relation-to-elder-financial-abuse-and-assessing-mental-capacity.
38 For example, the course explained several tools that health professionals may use to assess patients: the Mini-Mental State Examination (a common test used to screen for cognitive impairment); the General Practitioner Assessment of Cognition (designed for primary care practitioners to screen for dementia); the Kimberly Indigenous Cognitive Assessment (a dementia assessment tool for use with older Indigenous Australians living in rural or remote areas); and the Rowland Universal Dementia Assessment Scale (recommended when assessing cognitive function in people from culturally and linguistically diverse backgrounds). The course content noted that these assessment tests are not determinative of capacity to make a specific legal decision, but legal practitioners may need to weigh up information from health professionals in their consideration of a client’s capacity to instruct in relation to a legal matter.
39 Commission on Law and Aging and American Bar Association, ‘Advance Directives: Counseling Guide for Lawyers’ (2018), <www.americanbar.org/groups/law_aging/resources/health_care_decision_making/ad-counseling-guide/>.
40 This course content was based on: Barak Gaster, Eric B Larson and J Randall Curtis, ‘Advance Directives for Dementia: Meeting a Unique Challenge’ (2017) 318(22) J Am Med Assoc 2175.
41 Claire A Surr et al, ‘Effective Dementia Education and Training for the Health and Social Care Workforce: A Systematic Review of the Literature’ (2017) 87(5) Rev Educ Res 966.
42 Yair Listokin and Raymond Noonan, ‘Measuring Lawyer Well-Being Systematically: Evidence from the National Health Interview Survey’ (2021) 18(1) J Empirical Legal Stud 4; Kathryn Birtwistle, ‘Access to Digital Records upon Death or Incapacity: Survey Results’ (Research Report No 15, New South Wales Law Reform Commission, 2019) <https://www.lawreform.justice.nsw.gov.au/Documents/Publications/Other-Publications/Research-Reports/RR15.pdf>; Ries et al (n 8).
43 Rima Sirota, ‘Can Continuing Legal Education Pass the Test? Empirical Lessons from the Medical World’ (2022) 36(1) Notre Dame J Law Ethics Publ Pol 1. Sirota observes (at 2) that ‘no evidence-based reason has emerged to support the conclusion that CLE bears any relationship – much less a causal one – to better lawyering’.
44 Kevin Muirhead et al, ‘Establishing the Effectiveness of Technology-Enabled Dementia Education for Health and Social Care Practitioners: A Systematic Review’ (2021) 10(1) Syst Rev 252.
45 Recent research into domestic violence lawyering offers an informative model: Jane Wangmann et al, ‘What Is “Good” Domestic Violence Lawyering?: Views from Specialist Legal Services in Australia’ (2023) 37(1) Int J Law Policy Fam ebac034.
46 Australian Government, Department of Health and Aged Care (n 4).
47 See eg Emma Wolverson et al, ‘The Language of Behaviour Changes in Dementia: A Mixed Methods Survey Exploring the Perspectives of People with Dementia’ (2021) 77(4) J Adv Nurs 1992; Andrea Gilmore-Bykovskyi et al, ‘Nomenclature Used by Family Caregivers to Describe and Characterize Neuropsychiatric Symptoms’ (2020) 60(5) Gerontologist 896.
48 Australian Government, Department of Health and Aged Care (n 4) 37.
49 Annelien Wendrich-van Dael et al, ‘Advance Care Planning for People Living with Dementia: An Umbrella Review of Effectiveness and Experiences’ (2020) 107 Int J Nurs Stud 103576.
50 Bryant et al, ‘Inadequate Completion’ (n 32); preparation of care planning documents by a third party raises questions as to whether they accurately represent the values and preferences of the person living with dementia. See also Detering et al (n 32) for data on the low uptake of statutory ACP documents.
51 See eg Sean Morrison (n 34).
52 Grace W Orsatti, ‘Attorneys as Healthcare Advocates: The Argument for Attorney-Prepared Advance Healthcare Directives’ (2022) 50(1) J Law Med Ethics 157.
53 Australian Government, Department of Health and Aged Care (n 4) 43.
54 Sinclair et al (n 12).
55 Kelly J Purser and Tuly Rosenfeld, ‘Evaluation of Legal Capacity by Doctors and Lawyers: The Need for Collaborative Assessment’ (2014) 201(8) Med J Austr 483.
56 Karen Sullivan and Kelly Purser, ‘Developing and Piloting the Consumer Experience of Capacity Assessment Tool (CECAT)’ (2022) 29(5) Psychiatr Psychol Law 752.
57 Ibid.
58 Joyce Siette et al, ‘Advancing Australian Public Health Initiatives Targeting Dementia Risk Reduction’ (2022) 41(2) Australas J Ageing e190. These authors highlight the ‘structural enablers of healthy behaviour such as system level changes through policy, legislation, and taxation’.
59 Michael Jay Badger et al, ‘Concerns About Cognitive Impairment and Older Lawyers’ (2015) 25(2) Experience Mag Senior Lawyers Div Am Bar Assoc 30; Debra S Austin, ‘Drink Like a Lawyer: The Neuroscience of Substance Use and Its Impact on Cognitive Wellness’ (2014) (15) Nevada Law J 826.
60 Sirota (n 43).
61 Brandy Schwarz, Mike Richardson and Kathlene Camp, ‘Impact of a Short-Duration Experiential Learning Activity on DPT Students’ Attitudes toward Patients Living with a Dementia’ (2023) Gerontol Geriatr Educ 1; Moehead et al (n 19).
62 See n 21.
63 See n 27.
64 Australian Government, Department of Health and Aged Care (n 4) 6.
65 Betty S Black et al, ‘Unmet Needs in Community-Living Persons with Dementia Are Common, Often Non-Medical and Related to Patient and Caregiver Characteristics’ (2019) 31(11) International Psychogeriatrics 1643; Elise Mansfield et al, ‘Prevalence and Type of Unmet Needs Experienced by People Living with Dementia’ (2022) 87(2) J Alzheimer Dis 833; Elise Mansfield et al, ‘Prevalence and Type of Unmet Needs Experienced by Carers of People Living with Dementia’ (2022) Aging Mental Health 1.
66 Margaret Brown et al, ‘What Are Dementia Champions and Why Do We Need Them?’ (2018) 17(4) Dementia 397.