Rights and people living with

dementia

Residential Aged Care Communique Seminar, 15th June 2018

Dr David Sykes, Director, Centre for

Dementia Learning and Dementia Training

Australia.

What is dementia?

• Dementia is a disease of the brain

• Leading cause of death for women, second

leading cause of death after heart disease

in Australia (Aged 85+)

• More than 100 different types

• Not a normal part of ageing

PREVALENCE

Centre for Dementia Learning

Building on the experience of Dementia Australia over 30 years, we established the National Centre in 2017 to transform dementia practice through:

• Providing access to a comprehensive suite of learning and consultancy programs.

• Programs are informed by evidence, practice and the experience of people living with dementia.

• Providing learning experiences which touch move and inspire participants to transform their practice.

Greatest risk of abuse to people

living with dementia• As 70% of people living with dementia live in the community,

the greatest risk of abuse is at the hands of family members.

• Most likely the oldest son particularly in relation to financial abuse (Darzins et al, 2009)

• Hidden and hard to detect when occurring in the family home.

• Importance of the work to promote Dementia Friendly Communities

• Seeking to create 20,000 Dementia Friends

• If you are interested in finding out more go to www.dementiafriendly.org.au

Abuse and neglect often a result of

poor standards of care

• Low awareness levels of what

comprises abuse by aged care

workers

• Consumer reports of elder abuse

in residential care settings

• Escalating need for elder abuse

prevention in residential care

settings

Awareness of Elder Abuse

Key issues from Elder Abuse reform

for people living with dementia.Australian Law Reform Commission (ALRC)

Elder Abuse Report

• National Policy Framework

• Strong focus on Aged Care Improvement

• Improved reporting and monitoring of

sexual or physical abuse

• Optimal staffing models and levels

• Regulating restrictive practices

• Gathering better data

• Guidelines for financial institutions

Government response to ALRC Report• Prevalence research by Australian Institute of Family Studies

• New National Plan being developed

• Budget 2018-19, $22 million towards

• increased front line support

• Expansion and evaluation of service trials

• National online register for Enduring

Powers of Attorney

Key findings from various

Government investigations into

residential aged care• Independent oversight of the aged care

complaints system

• Star rated performance system for RACF

• Additional limitations on restrictive practices

• Establishment of the new aged care safety

and quality commission

Abuse issues affecting people living

with dementia

• People with dementia uniquely vulnerable to abuse

• Slow pace of reforms, current focus only on community-based abuse

• High prevalence of abuse in residential care settings

• Dementia still not ‘core’ business

• No mandatory dementia training for workforce

• Reliance on chemical and physical restraint

• Lack of meaningful engagement

• Lack of education on communicating with people with dementia

Dementia education

Cohesive, structured and integrated national approach to dementia

training and education:

• minimum standards for education,

• focus on leadership, cultural change.

Supported by government and by the aged care industry, and focus

on achieving sustainable changes

Key elements of dementia educationWorkforce highlighting unmet need for more education and training on dementia

Quality of workforce education significantly variable

Education in key aspects of dementia care:

• Person-centred care

• Communication and engagement

• Psychosocial approaches to addressing unmet needs

• Pain assessment and management

• Developing a real empathy for the person living with dementia

• Appropriate end-of-life care

• Emotional intelligence

10%

20%

70%

10% - Formal Education

Learning and developing through

structured courses and education

20% - Social/Exposure

Learning and developing through

interacting with others in

coaching, collaboration,

mentoring and feedback

situations

70% - Experience Learning

Learning and developing through

on the job, day to day tasks,

challenges and practices

Leadership and cultural change

• Establishing an appropriate culture of care

• Leadership that focusses on a learning culture

• Environment that promotes practice change

Importance of organisational culture

Learning

Leadership

Managing

change

Engagement

Promoting practice change

• Practice change is crucial

• Measures such as ongoing mentoring and coaching are vital

• Link dementia education to competency and practice standards

Svetlana

Conclusion- Greater awareness of abuse

- Greater protections and reporting requirements

- Leadership and the cultures this promotes

- Standards of dementia care

- Minimum dementia education standards

- Dementia Friendly Community

ReferencesThe National Centre for Social and Economic Modelling NATSEM (2016) Economic Cost of Dementia in Australia 2016-2056

Australian Bureau of Statistics (2015) Causes of Death, Australia, 2015 (cat. no. 3303.0) 3

Australian Institute of Health and Welfare (2012) Dementia in Australia Australian Institute of Health and Welfare (2012)

Residential Aged Care in Australia 2010-2011: A Statistical Overview (cat. No. AGE 68. Canberra)

Alzheimer’s Disease International (2015) World Alzheimer Report 2015: The Global Impact of Dementia - an Analysis of

Prevalence, Incidence, Cost and Trends

Carnell, K., Patterson R., (2018) Review of National Aged Care Regulatory Processes.

Commonwealth of Australia (2018) Effectiveness of the Aged Care Quality Assessment and accreditation framework for

protecting residents from abuse and poor practices, and ensuring proper clinical and medical care standards are maintained

and practised: Interim report

Darzins,P, Lowndes, G and Wainer, J, 2009, Financial Abuse of Elders: a review of the evidence, State Trustees and Monash

University

Health Outcomes International for Department of Social Services (2015). Stocktake and analysis of Commonwealth funded

aged care workforce activities: Final report.

King D., Mavromaras K., Wei Z., He B., Healy J., Macaitis K., Moskos M., Smith L. for National Institute of Labour Studies,

Flinders University (2013). The aged care workforce 2012: Final report.