Care and management of younger and older Australians living

125 Pages·2014·0.67 MB·English

The Senate

Community Affairs
References Committee
Care and management of younger and
older Australians living with dementia and
behavioural and psychiatric symptoms of
dementia (BPSD)

March 2014
 Commonwealth of Australia 2014
ISBN 978-1-74229-944-0

Secretariat
Mr Matthew Crawshaw (Committee Secretary)
Dr Ian Holland (Committee Secretary)
Mr Gerry McInally (Principal Research Officer)
Dr Richard Grant (Principal Research Officer)
Ms Erin East (Principal Research Officer)
Mr Jarrod Baker (Senior Research Officer)
Ms Annemieke Jongsma (Senior Research Officer)
Ms Monika Sheppard (Senior Research Officer)
Ms Elise Williamson (Research Officer)
Ms Eloise Menzies (Research Officer)
Ms Carol Stewart (Administrative Officer)

PO Box 6100
Parliament House
Canberra ACT 2600
Phone: [phone]
Fax: [phone]
E-mail:
MEMBERSHIP OF THE COMMITTEE
rd
43 Parliament
Members
Senator Rachel Siewert, Chair Western Australia, AG
Senator Claire Moore, Deputy Chair Queensland, ALP
Senator Ronald Boswell Queensland, NATS
Senator Sue Boyce Queensland, LP
Senator Dean Smith Western Australia, LP
Senator the Hon Lin Thorp Tasmania, ALP
th
44 Parliament
Members
Senator Rachel Siewert, Chair Western Australia, AG
Senator Sue Boyce, Deputy Chair Queensland, LP
Senator Carol Brown Tasmania, ALP
Senator Nova Peris OAM Northern Territory, ALP
Senator Dean Smith Western Australia, LP
Senator Anne Urquhart (to 6 March) Tasmania, ALP
Senator the Hon Lin Thorp (from 6 March) Tasmania, ALP

Substitute members
Senator the Hon Lin Thorp Tasmania, ALP
for Senator Carol Brown
(from 4 December 2013 to 26 March 2014)

Participating members for this inquiry
Senator Carol Brown Tasmania, ALP
Senator Claire Moore Queensland, ALP
Senator the Hon Lin Thorp Tasmania, ALP
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iv
TABLE OF CONTENTS

Membership of the Committee ........................................................................ iii
Abbreviations ....................................................................................................vii
List of Recommendations .................................................................................. ix
Chapter 1
The care and management of younger and older Australians living with
dementia and behavioural and psychiatric symptoms of dementia (BPSD) ....... 1
Terms of Reference ............................................................................................... 1
Conduct of the inquiry ......................................................................................... 1
Structure of the committee's report .................................................................... 2
Chapter 2
What is Dementia? ................................................................................................... 3
Dementia in Australia ............................................................................................. 7
Chapter 3
Community care ..................................................................................................... 15
Supports to keep people with dementia in the community .................................. 15
Adequacy of community care ............................................................................... 24
Respite care for people with dementia ................................................................. 29
Conclusion ............................................................................................................ 37
Chapter 4
Meeting the needs of Behavioural and Psychological Symptoms of Dementia
in residential care.................................................................................................... 39
Accreditation standards ........................................................................................ 39
Funding ................................................................................................................. 41
Leaders in dementia-appropriate facilities and care ............................................. 44
Specialised dementia facilities? ............................................................................ 54
Committee view: best practice care ...................................................................... 56
Chapter 5
The dementia care workforce ................................................................................ 59
Retaining skilled workers ..................................................................................... 69
Chapter 6
The use of restraints in dementia care .................................................................. 71
The rights of patients and considerations in using restraints ............................... 72
Chemical Restraints .............................................................................................. 73
Physical restraints ................................................................................................. 79
Guidelines for the use of restraints ....................................................................... 81
Are restraints necessary? ...................................................................................... 82
Committee view .................................................................................................... 85
Chapter 7
Younger Onset Dementia ....................................................................................... 87
Interaction between Acute-, Disability-, and Aged-care ...................................... 88
Caring for people with younger onset dementia .................................................. 90
Improving care for people with younger onset dementia ..................................... 94
Committee view .................................................................................................... 97
Concluding comments ...................................................................................... 99
Appendix 1
Submissions and additional information received by the Committee ............. 103
Appendix 2
Public hearings ...................................................................................................... 109

vi
ABBREVIATIONS

ACAP Aged Care Assessment Program
ACAT Aged Care Assessment Team
ACFI Aged Care Funding Instrument
ADARDS Alzheimer's Disease and Related Disorders Society
AIHW Australian Institute of Health and Welfare
AMA Australian Medical Association
APS Australian Psychological Society
BPSD Behavioural and Psychological Symptoms of Dementia
(formerly Behavioural and Psychiatric Symptoms of Dementia)
CHSP Commonwealth Home Support Program
DBMAS Dementia Behaviour Management Advisory Service
Department Department of Health and Ageing
DSM-5 Diagnostic and Statistical Manual 5
DSP Dementia Services Pathways – An essential guide to effective
service planning
DSS Department of Social Services
ERA Elder Rights Advocacy
GPs General Practitioners
HACC Home and Community Care
HCPP Home Care Packages Program
Key workers Younger Onset Dementia Key Workers
KWP Key Worker Program
NDIS National Disability Insurance Scheme
NDS National Disability Services
NHPA National Health Priority Area
NRCP National Respite for Carers Program
NSWNMA New South Wales Nurses and Midwives' Association
PAG Planned Activity Groups
PBS Pharmaceutical Benefits Scheme
PCC Person-centred care
RACF Residential aged care facility
RACFs Residential aged care facilities
RACGP Royal Australian College of General Practitioners
RANZCP Royal Australian and New Zealand College of Psychiatrists
SARRAH Services for Australian Rural and Remote Allied Health
WHO World Health Organisation
YOD Younger onset dementia
YPINH Young People in Nursing Homes National Alliance

viii
LIST OF RECOMMENDATIONS

Recommendation 1
2.42 The committee recommends that the Commonwealth create a new
Medicare item number that encourages General Practitioners, registered
psychologists or other relevant accredited professionals, to undertake longer
consultations with a patient and at least one family member or carer where the
patient has presented with indications of dementia.

Recommendation 2
3.39 The committee recommends that the Commonwealth consider increasing
funding for the Younger Onset Dementia Key Worker Program in order to
provide support to all people living with dementia. The increased funding should
also ensure that accurate data is collected for evaluation purposes.

Recommendation 3
3.40 The committee recommends that each State and Territory develop
dementia training facilities similar to the Perc Walkley Dementia Learning
Centre in Victoria.

Recommendation 4
3.53 The committee recommends that the Commonwealth encourage relevant
professional organisations, such as the Royal Australian College of General
Practitioners, to ensure that patients diagnosed with dementia and their carers
are informed by health professionals of the dementia supports available and how
to access them.

Recommendation 5
3.95 The committee recommends that the Commonwealth facilitate and
potentially fund the establishment of dementia-specific respite facilities,
including in regional and remote areas.

Recommendation 6
3.96 The committee recommends that the Commonwealth, in consultation with
industry, develop guidelines regarding dementia-specific respite facilities that
can effectively manage BPSD.
Recommendation 7
3.97 The committee recommends that the Commonwealth explore options for
improving the provision of respite in rural and remote areas.

Recommendation 8
4.79 The committee recommends that the accreditation standards for
Residential Aged Care Facilities include requirements for dementia-friendly
design principles.

Recommendation 9
4.80 The committee recommends that the accreditation standards for
Residential Aged Care Facilities reflect a better balance between clinical and
quality-of-life outcomes.

Recommendation 10
5.44 The committee recommends that a phased program of accredited training
in dementia and the management of Behavioural and Psychological Symptoms of
Dementia (BPSD) be required for all employees of Residential Aged Care
Facilities.

Recommendation 11
5.45 The committee recommends that the Commonwealth take a proactive
stance in highlighting the importance of staff training in dementia care, and
develop linkages between care and education providers.

Recommendation 12
6.19 The committee recommends that the use of antipsychotic medication
should be reviewed by the prescribing doctor after the first three months to
assess the ongoing need.

Recommendation 13
6.20 The committee recommends that residential aged care facilities, as part of
their existing Aged Care Standards and Accreditation Agency annual audit
process, report:
• circumstances where an individual has been prescribed antipsychotic
medication for more than six months, together with the reasons for and
any steps taken to minimise that use; and
• general usage patterns of antipsychotic medications in each facility.
x