Neuroscience Research Australia (NeuRA) has found that dementia prevalence is three times higher in Aboriginal peoples compared to estimates for the general Australian population. These rates are consistent across remote, regional and urban communities.
NeuRA is undertaking further research to understand the causes of these higher rates of dementia, reduce the burden of dementia and improve health and longevity for Aboriginal Australians, as they grow older.
An Aboriginal or Torres Strait Islander Person with dementia can experience more communication barriers due to language and cultural differences with the people who provide their care.
Illustrated cue cards can help care staff to understand the needs of the person and reduce anxiety.
The Dementia Support Australia website has 58 illustrated cards that can be ordered or downloaded in black and white or in colour. Each card has space on the back to write the word in the language of the person.
The cards have been co-designed with First Nations representatives.
Australian Indigenous HealthInfoNet – Dementia includes a collection of publications, policies, resources, programs and organisations related to dementia among Aboriginal and Torres Strait Islander people.
Dementia in Aboriginal And Torres Strait Islander communities is higher than the general Australian population. The Caring for Spirit – Aboriginal and Torres Strait Islander Online Dementia Education website provides a centralised online collections of resources. It includes education and training for people living with dementia, their families and carers, and Aboriginal and Torres Strait Islander Health Workers.
This video from the Agency for Clinical Innovation provides tips for clinicians to make hospital wards more culturally safe for Aboriginal people and their families.
The Commission has included six specific actions in the second edition of the NSQHS Standards about Aboriginal and Torres Strait Islander health. The User guide for Aboriginal and Torres Strait Islander health was developed to assist health service organisations in meeting these action and improving the safety and quality of care for Aboriginal and Torres Strait Islander people.
Western Australian Centre for Health and Ageing has a series of modules that include dementia and delirium. The delirium module is a case study focusing on the recognition of delirium in an older Aboriginal person in hospital.
The Wicking Dementia Centre booklet Talking about Dementia and Dying – A discussion tool for residential aged care facility staff is a resource to support important discussions about end-of-life care. It discusses how and when to communicate with people with dementia and their families, and why this is so essential to providing appropriate care and enhancing overall quality of life.
Dementia Australia website has useful presentations and resources about advance care planning
The National Health and Medical Research Council’s (NHMRC) Partnership Centre for dealing with cognitive and related functional decline in older people (CDPC)’s advance care planning project developed resources with consumer and industry input to support future planning and advance care planning for people with dementia.
This university of Western Sydney publication Dementia information for carers, families and friends of people with severe and end stage dementia seeks to provide information about what will happen to a person living with dementia and help with advance care planning.
Allies in Dementia Health Care Project, a joint initiative of Dementia Australia and the NSW Agency for Clinical Innovation has developed resources that provide an overview of the important role of allied health in supporting people with dementia.
Antipsychotics & Dementia: Managing Medications is a video on Dementia Australia’s Detect Early website about the use of antipsychotics and alternative solutions for behavioural and psychological symptoms of dementia.
The Commission’s first Australian Atlas of Healthcare Variation found high and varied rates of antipsychotic medicines dispensed for people aged 65 and over. The repeat analysis in the 2018 Atlas indicated that there has been little change in the overall amount of use. The current use of antipsychotic medicines outside current guideline recommendations as a form of restrictive practice to manage behavioural and psychological symptoms of dementia (BPSD) in aged care homes is a matter of grave concern. The Commission proposed a series of regulatory responses.
This NSW Health guide provides deprescribing information that can be applied verbally or in writing, between clinicians, patients and carers.
As part of the Caring for Cognitive Impairment campaign, the Commission produced an infographic targeted at reducing inappropriate use of antipsychotics. It summarises why this is such an important issue for people with behavioural and psychological symptoms of dementia (BPSD) across multiple healthcare settings. It was developed as a result of work undertaken in response the Commission’s first Australian Atlas of Healthcare Variation that found high and variable use in people aged 65 and over.
NPS Medicinewise provides information on making treatment decisions, on managing medicines and cognitive impairment. Key resources include
The Department of Health’s infographic provides 6 steps to follow for prescribing antipsychotics and benzodiazepines to manage the behavioural and psychological symptoms of dementia in residential care homes.
The NPS MedicineWise website provides information, resources and tools for understanding and managing behavioural and psychological symptoms of dementia. These include A stepwise approach and a clinician resource for reviewing and tapering antipsychotic medicines.
This video from the Confused Hospitalised Older Person’s (CHOPS) Program emphasises the importance of undertaking further assessment to determine the cause when an older person is cognitively impaired.
This 2013 publication by the NSW Ministry of Health and the Royal Australian and New Zealand College of Psychiatrists is a practical resource for health staff who work with people with dementia and those who experience behavioural and psychological symptoms associated with dementia.
Dementia Training Australia provides a service and resources to assist staff in aged care and health care facilities to understand the causes of “responsive behaviours” and to find ways to avoid or reduce them. The service can complement services provided by Dementia Support Australia (DSA).
Additional learning courses are detailed in Education and Online training.
This webinar focuses on what clinicians can to reduce distress that is often experienced by people with cognitive impairment in hospital.
Brain Injury Australia (BIA) website provides information, news and resources for people living with brain injury.
Families 4 Families provides tailored, family focused programmes centred on Local Support Groups which facilitate capacity building and a sense of belonging through sharing of information, lived experiences and positive coping strategies.
This article provides a summary of the available evidence for assessing traumatic brain injury and managing the common mental health, physical and cognitive/behavioural issues associated with it.
Capacity Australia is a not for profit organisation that provides general information for clinicians on assessing capacity in relation to the legislation in each state and territory.
See ‘Understand the concepts of capacity, informed consent and decision-making’ on page 11 of A better way to care – Safe and high quality care for patients with cognitive impairment or at risk of delirium in acute health services (Second edition), and ‘Chapter 6 Partnering with Consumers Standard’ on pages 37-43 of the National Safety and Quality Health Service Standards User guide for health services providing care for patients with cognitive impairment or at risk of delirium.
Equality, Capacity and Disability in Commonwealth Laws (ALRC Report 124) published by Australian Law Reform Commission in 2014 is the final report on the Inquiry about people with disability having an equal right to be supported to make decisions for themselves.
A summary report and an Easy English summary is also available.
Aged Health Network aims to improve the health of older people in NSW by researching, developing and supporting implementation of appropriate models of care for an ageing population.
Care of Older People Clinical Network brings together expert clinicians who routinely provide care for older people, healthcare leaders, consumers and academics working in research on ageing. The network provides clinical leadership, expertise and advice to Safer Care Victoria with the ultimate aim of achieving optimal clinical outcomes and reducing harm for older people across the health system.
Disability Health Network aims to improve health outcomes for people with disability by enabling consumers, families and carers, health professionals, hospitals, health services and the WA Department of Health to engage and collaborate effectively to facilitate health policy and increased coordination of care across the State.
Intellectual Disability Network (NSW) is working to improve the experience and delivery of healthcare for people with intellectual disability of every age by providing clinical leadership, research and education.
Statewide Dementia Clinical Network, based in Queensland, is open to all clinicians with an active interest in improving care of people with dementia. The role of the network includes promoting innovative practice to improve the quality of dementia services and fostering education and research and disseminating knowledge.
Statewide Older Person’s Health Network, based in Queensland, aims to guide improvement in patient health outcomes, functional capacity and quality of life by identifying service gaps in acute and subacute care services. This includes rehabilitation, palliative care, subacute mental health and Geriatric Evaluation Management and psycho-geriatric services in both hospitals and the community.
See ‘Screening’
MAXCOG: Maximising Cognition are resources developed for people with mild cognitive impairment and early dementia that provide techniques and strategies to manage difficulties related to thinking, memory, language and vision.
Older people in hospital is a Victorian resource in its third edition that provides clinicians with evidence-based information and simple strategies to minimise the risk of functional decline for older people in hospital. This section relates to cognition.
There are extensive resources about cognitive impairment on the Caring for Cognitive Impairment campaign website.
The campaign infographic summarises the purpose and target audience for the campaign and can be downloaded and used as a poster to promote the campaign.
An Aboriginal or Torres Strait Islander Person with dementia can experience more communication barriers due to language and cultural differences with the people who provide their care.
Illustrated cue cards can help care staff to understand the needs of the person and reduce anxiety.
The Dementia Support Australia website has 58 illustrated cards that can be ordered or downloaded in black and white or in colour. Each card has space on the back to write the word in the language of the person.
The cards have been co-designed with First Nations representatives.
The Centre for Dementia Learning has launched a mobile app, Ask Annie, for home and community support workers caring for people living with dementia. It provides self-paced learning through videos, interactive quizzes and practical tips to build their dementia support skills. A free trial is available on their website, which explains that “Ask Annie helps users understand how people living with dementia may be communicating their unmet needs through behaviours”.
The following are useful communication tools that can assist in providing person centred care for people with dementia.
The Focus on the person form is designed to help family carers inform hospital staff about a person living with dementia. It was developed by Toye et al from Curtin University and Sir Charles Gairdner Hospital, with funding from the Dementia Collaborative Research Centre: Carers and Consumers.
The Sunflower tool is another example that has been used in Confused Hospitalised Older Person’s (CHOPS) Program. See this clinician experience video.
Alzheimer’s Society (UK)– This is me tool, provides a simple and practical tool that people with dementia can use to tell staff about their needs, preferences, likes, dislikes and interests.
The Agency for Clinical Innovation has created Say Less, Show More, a series of photo stories (visuals) to support children, young people and adults, including those with a disability, during routine medical procedures.
There is an E-learning package to help health professionals learn about using visuals, and other support materials, promotional tips, posters and postcards.
You can also read how this initiative is based on collaborative partnerships between health and disability sectors.
West Moreton Hospital and Health Service has developed Julian’s Key, which is being trialled in Logan and Ipswich Hospitals for 12 months from August 2019.
This tool is primarily for people with intellectual or cognitive disability but could benefit anyone who might have difficulty communicating in a health and hospital setting. The tool is available as a mobile application, an editable PDF and a paper-based form.
More information on the tool and eligibility to participate in the evaluation is available here.
Dementia Australia’s booklet “Let’s Talk” provides communication tips for talking to people with dementia.
Managing changes in communication outlines possible changes in communication as a result of dementia and suggests ways families, carers and friends can help. Communication Help Sheet outlines possible changes in communication as a result of dementia and suggests ways families and carers can help. It also includes some personal tips on communication written by a person with dementia.
Dementia Australia’s Communicating the diagnosis is a resource for health professionals with recommendations for disclosing a diagnosis of dementia.
Dementia Australia’s Dementia Language Guidelines, promote use of non-stigmatising language when talking about dementia and people with dementia.
This video from the Confused Hospitalised Older Person’s (CHOPS) Program talks about the importance of communication, with patients, carers and families and between and between all members of the multidisciplinary team.
Sight, perception and hallucinations in dementia is a factsheet from the UK Alzheimer’s Society that outlines the vision and perception difficulties that a person living with dementia can experience and suggests way of providing support. These difficulties are a reminder of the importance of understanding not only cognitive changes but also the perceptual, visual and language difficulties experienced by a person with cognitive impairment and that these will be different for each person and will change over time.
Acquired Brain Injury Outreach Service (ABIOS) of Queensland Health provides a webpage that outlines communication and languages changes following an acquired brain injury and useful strategies for communication.
The Comprehensive Care Standard is one of eight in the National Safety and Quality Health Service (NSQHS) Standards and is critical when caring for people with cognitive impairment or at risk of delirium. The standards aim to ensure comprehensive health care that meets their individual needs, and considers the impact of their health issues on their life and wellbeing. It also aims to ensure that risks of harm for patients during health care are prevented and managed through targeted strategies.
This guide is for people with cognitive impairment, carers, families and support people. It provides information about keeping you safe and supported when you are in hospital and other healthcare environments.
This resource has been translated into 10 languages for people from culturally and linguistically diverse backgrounds, living with cognitive impairment.
This book tells you about your right to health care that is
The consumer guide from the Allies in Dementia Health Care Project is a joint initiative of Dementia Australia and the NSW Agency for Clinical Innovation.
Diagnosis, treatment and care for people with dementia: A consumer companion guide complements the Clinical Practice Guidelines and Principles of Care for People with Dementia.
The Caring for Cognitive Impairment campaign encourages consumers and carers to share their experience of cognitive care in hospital. You can share your story by completing a form online.
Australasian Delirium Association provides community information on delirium on their website.
Dementia Australia’s website provides a wealth of useful resources for consumers including:
Through this website consumers can arrange online counselling (email or videoconference), learn about dementia, connect with others and find out where and how to get help.
Dementia information in other languages is provided on Dementia Australia’s website.
Healthdirect, a government-funded service, providing quality, approved health information has information on Dementia and on Delirium and Dementia.
NPS Medicinewise provides information on making treatment decisions, on managing medicines and cognitive impairment. Key resources include
Dementia Australia has produced Support pathways for people with younger onset dementia referral and service options that outlines health, social, community, legal services and resources which could be useful for people with younger onset dementia.
Mencap is a UK organisation that provides advocacy, support and resources for people living with a learning disability.
Their consumer resource about reasonable adjustments explains the right to be treated equally by hospitals making reasonable adjustments such as providing information in Easy Read or allowing more time for an appointment. This resource may also be suitable for people living with cognitive impairment or intellectual disability, who may also require reasonable adjustments to receive high quality healthcare.
As Holocaust survivors age, they may experience heightened anxiety around normal processes of ageing, worsened posttraumatic stress disorder with cognitive decline, and fear of the medical system.
The issues discussed in this article from the Medical Journal of Australia are also relevant to the wider geriatric or prisoner-of-war experience.
As a marginalised and growing segment of the older adult population, lesbian, gay, bisexual and transgender (LGBT) older adults face distinct risk factors related to cognitive impairment and dementia. This article describes the unique risk factors and outlines key competencies for service providers to ensure culturally relevant care for LGBT older adults experiencing cognitive impairment of dementia, as well as their caregivers , families and communities.
Dementia Training Australia (DTA) is offering a new online course to help dementia care workers and organisations provide inclusive care and services for lesbian, gay, bisexual, transgender and intersex (LGBTI) people with dementia.
As part of the implementation of the LGBTI strategy, the Australian Government in partnership with various LGBTI advocacy and support agencies has compiled a collection of LGBTI specific ageing and aged care resources for the LGBTI community, their loved ones, carers and aged care service providers.
The Dementia Australian website has many resources for both consumers and service providers on lesbian, gay, bisexual, transgender and intersex people and dementia.
The Moving Pictures: Dementia awareness for culturally and linguistically diverse communities features short films in Tamil, Hindi, Cantonese, Mandarin and Arabic with English subtitles. The films are based on the real life experiences of carers in culturally and linguistically diverse groups and communities and were developed by the National Ageing Research Institute and Curtin University.
Australasian Delirium Association aims to promote better understanding of delirium through leadership, education, support, resources, research and partnerships.
In this webinar Professor Gideon Caplan answers further questions on delirium that weren’t covered in his popular first delirium webinar.
This webinar explains what delirium is, its risks and how to prevent it.
A new article on Delirium at the end of life by Meera R. Agar has been published in Age and Ageing 2020.
This article discusses the prevalence and specific challenges of caring for patients with delirium who are approaching the end of life. Clinical challenges in the palliative care setting include distinguishing reversible delirium from delirium in the patient who is close to dying, and that symptoms and causes of distress in the person with delirium at the end of life often have many components.
The article also emphasises the importance of communication and shared decision-making.
A delirium awareness raising video produced in the UK with the aim of improving recognition and management of delirium in any healthcare setting. This tool as a resource for information or training about delirium, whether you are a health care professional, a family member or a carer or someone at risk of delirium.
Healthcare Improvement Scotland has a delirium booklet for people who have experienced delirium, and their carers. As well as explaining what delirium is, how to reduce the risk of, identify and treat delirium, it described what it is like to have delirium.
The booklet is available as a PDF.
The Agency for Clinical Innovation has published an information brochure for people who are at risk of, or have experienced delirium, and for their families and carers.
The brochure is now available in 14 community language translations – Arabic, Armenian, Chinese ST, Chinese TR, Filipino, Greek, Hindi, Italian, Japanese, Korean, Macedonian, Russian, Spanish, Vietnamese. They are available here.
Information regarding the Delirium Clinical Care Standard is available on the Clinical Care Standards page.
Further information is available on the Commission’s website including accompanying resources for consumers, clinicians and health services on appropriate care to people at risk of, or with, delirium.
Delirium in older people: Australian and New Zealand Society for Geriatric Medicine position statement 13 provides evidence-based recommendations on the prevention, assessment, treatment and management of delirium.
The delirium infographic highlights that delirium is common in hospitals and is associated with increased risks of harm. It can be downloaded and used as a poster to raise awareness.
Delirium is everybody’s business – extract from Ms Bacorro’s interview.
This video from the Confused Hospitalised Older Person’s (CHOPS) Program explains the importance of identifying a person at risk of delirium and what you can do.
Videos for delirium that include doctors and delirium, the nursing perspective and carer experiences.
This research article in the British Medical Journal discusses the estimated impact of delirium in the Australian population in 2016-2017, including financial costs, and its burden on health. The study by the Australian Delirium Association found that there are more than 130,000 cases of delirium each year in Australia, and the total estimated cost of delirium is $8.8 billion per year.
HACs delirium short fact sheet is designed as quick reference guide for frontline clinicians.
idelirium is the website for the federation of American, Australian and European delirium societies.
Delirium expert, Professor Sharon Inouye is interviewed by Associate Professor Gideon Caplan. They discuss the vital importance of addressing delirium in our health care system.
Learn about Delirium is a QUT self-paced online course about delirium and delirium superimposed on dementia.
Learn about delirium is a QUT self-paced online course about delirium and delirium superimposed on dementia. For other online education, see Online Learning.
Professor Kurrle explains delirium and a family member outlines what is important from the family’s perspective.
Clinicians explain key strategies for providing high quality care for people with cognitive impairment.
A patient describes his experience of post operative delirium in a video that highlights how distressing the experience can be.
See also education videos on delirium under educational videos.
See also Learn about Delirium under online learning.
Vanderbilt University Medical Centre ICU Delirium website provides education about delirium in the ICU for health professionals and patients and families.
The NSW Agency for Clinical Innovation has a resources page with screening and assessment tools to help identify cognitive impairment, dementia, and delirium in older people.
The 4 A’s test appears to be helpful in diagnosing people with suspected delirium in time-pressured environments, as it is shorter than the existing full screening tools.
You can read more about the NIHR – funded study that looked at the use of the 4A’s test in practice, and its diagnostic accuracy here.
Hospital Elder Life Program (HELP), developed by the Yale University School of Medicine, provides access to the Confusion Assessment Method (CAM), as well as other tools and training manuals.
TIME to think delirium, developed by the National Health Service’s Education for Scotland, is a change package and provides information and tools, including the 4AT.
The Victorian Health Services Older People in Hospital website provides information, tools and resources to identify delirium.
Preventing Iatrogenic Delirium Change Package: 2016 is a change package developed for hospitals by the HRET Hospital Improvement Innovation Network that provides a range of strategies and specific actions to prevent delirium.
A multi-disciplinary program that prevents delirium is being implemented in ten new hospitals in Queensland in 2019, and piloted in a first interstate site at Flinders Medical Centre, Flinders University.
The aim of the program is to ensure mobility, nutrition and hydration, and meaningful activities to improve the care and outcomes of older patients in hospital, including preventing delirium and promoting recovery.
You can read more about the Eat Walk Engage program, including evaluations, results and lessons learnt.
Hospital Elder Life Program (HELP) – Dr. Sharon K. Inouye and her colleagues at the Yale University School of Medicine originally designed HELP to prevent delirium and it has developed into a comprehensive program to optimise the care of older people in the hospital.
Think Delirium: Preventing delirium amongst older people in our care. Tips and strategies from the Older Person’s mental Health Think Delirium Prevention project is a Christchurch, New Zealand: Canterbury District Health Board resource. The content in the book is derived from the staff engaged in the demonstration project to raise awareness of delirium risk and improve delirium prevention and management.
Tips, strategies and facts are provided on the topics of pain, infection, nutrition and constipation, hydration, exercise, sleep, medication, environment, communication, and a staff vision section ‘for a service that thinks delirium prevention’.
The NSW Agency for Clinical Innovation has a resources page with screening and assessment tools to help identify cognitive impairment, dementia, and delirium in older people.
The new Advance Project – Dementia, led by HammondCare and funded by the Australian government, provides free, practical, evidence-based training and resources that make it easier for aged care and primary care professionals to initiate courageous end-of-life conversations and assess the palliative care needs of people living with dementia, to enable better care.
The Advance Project Dementia Toolkit on the Advance Project – Dementia website has been specifically designed for clinicians, managers, and care workers in aged care and primary care settings, to build greater confidence and skills in advance care planning and palliative care. The new dementia specific training and resources have been informed by literature reviews and extensive input and feedback from an expert advisory group, general practitioners, nurses, allied health professionals, aged and primary care managers, caseworkers, and people living with dementia and their families.
The ultimate goal of The Advance Project – Dementia is to enable people living with dementia to have the opportunity to express their needs and preferences for care at the end of life, and have access to palliative care and support for their families and carers.
The Centre for Dementia Learning has launched a mobile app, Ask Annie, for home and community support workers caring for people living with dementia. It provides self-paced learning through videos, interactive quizzes and practical tips to build their dementia support skills. A free trial is available on their website, which explains that “Ask Annie helps users understand how people living with dementia may be communicating their unmet needs through behaviours”.
This 2013 publication by the NSW Ministry of Health and the Royal Australian and New Zealand College of Psychiatrists is a practical resource for health staff who work with people with dementia and those who experience behavioural and psychological symptoms associated with dementia.
HealthWISE has produced a series of videos for carers of people living with dementia called Caring About Dementia.
Topics include:
This link provides a summary of the videos: e-booklet Caring About Dementia
Most people in Australia will first report symptoms of dementia to a family doctor or general practitioner. A resource from the resource from the Cognitive Decline Partnership Centre (CDPC), for use in general practice titled People with dementia: a care guide for general practice assists with making decisions about how to provide the best care for a person with dementia. The guide addresses six priority topics that a GP or primary care worker is likely to encounter when providing care for a person with a dementia diagnosis.
The topics covered in the guide include:
This Q & A resource from Dementia Australia provides information for consumers and carers about how anticholinergics work and the impact they may have in relation to dementia risk and cognitive functioning.
Professor Kurrle explains the difference between delirium and dementia.
Director of Emergency Medicine suggests strategies for providing appropriate care for people with cognitive impairment in ED.
Dementia Australia represents Australians living with dementia and the Australians involved in their care. They advocate for the needs of people living with all types of dementia, and for their families and carers, and provide support services, education and information.
The Dementia Care in Hospitals Program (DCHP) is a model of care linked to the use of a Cognitive Impairment Identifier (CII).
The CII is a bedside identifier used by Ballarat Health Services and other health services in Victoria to alert staff to memory and thinking difficulties such as dementia, delirium, and cognitive impairment.
Organisations who have adopted this model of care in partnership with BHS have undergone extensive hospital-wide education on the CII use and philosophy of care attached to the symbol.
The second edition of The Dementia Guide from Dementia Australia is available on their website dementia.org.au. You can also call the National Dementia Helpline on 1800 100 500.
For people living with dementia, this guide provides information about living well with dementia, and treatments, support and services available.
For family members and friends of someone with dementia it provides information, support and services available, and also about providing support in a carer role.
The dementia infographic summaries the risks of harm for people with dementia in hospital.
Dementia Support Australia works to improve the quality of life for people living with dementia and their carers through an individualised approach to understanding reasons for changes in behaviour. Their website has information on their services as well as a library with a variety of resources.
Dementia Training Australia provides a service and resources to assist staff in aged care and health care facilities to understand the causes of “responsive behaviours” and to find ways to avoid or reduce them. The service can complement services provided by Dementia Support Australia (DSA).
Additional learning courses are detailed in Education and Online training.
Dementia Australia has released a set of practical tips for health professionals to support people living with dementia.
There are many other resources for healthcare professionals on the Dementia Australia website.
This NPS MedicineWise webinar provides practical information on overcoming barriers while caring for people living with dementia.
Engage, Enable, Empower is a website for people living with dementia. It provides information on ways to have a good quality of life. The booklet focuses on mind, body, support and health, and includes advice on activities, nutrition and personal stories.
Living with Intellectual Disability and Dementia video produced Alzheimer’s Australia NSW, provides a resource for services working in the disability sector and for family members and friends who are concerned about signs of cognitive decline in a relative or friend who lives with an intellectual disability.
The 2016 NHMRC Partnership Centre for Dealing with Cognitive and Related Functional Decline in Older People has developed Clinical Practice Guidelines and Principles of Care for People with Dementia.
Clinicians explain the difference between delirium and dementia and the importance of involving family members.
The Cognitive Decline Partnership Centre has released a new resource for use in general practice titled People with dementia: A care guide for general practice. The guide is to assist with making decisions about how to provide the best care for a person with dementia, and addresses six priority topics that a general practitioner or primary care worker is likely to encounter when providing care for a person with a dementia diagnosis.
The topics covered in the guide include:
The guide was released at the Australasian Association of Gerontology on Thursday 7 November 2019.
Mencap is a UK organisation that provides advocacy, support and resources for people living with a learning disability.
Their consumer resource about reasonable adjustments explains the right to be treated equally by hospitals making reasonable adjustments such as providing information in Easy Read or allowing more time for an appointment. This resource may also be suitable for people living with cognitive impairment or intellectual disability, who may also require reasonable adjustments to receive high quality healthcare.
Two videos are available on the Agency for Clinical Innovation website that show how health outcomes for people with intellectual disability can be improved when fear, anxiety or mental health concerns prevent them from getting the medical help they need.
Captioned versions of the videos are also available.
Disability Health Network aims to improve health outcomes for people with disability by enabling consumers, families and carers, health professionals, hospitals, health services and the WA Department of Health to engage and collaborate effectively to facilitate health policy and increased coordination of care across the State.
West Moreton Hospital and Health Service has developed a patient/carer-controlled communication tool to improve communication for people with disability, their families and carers.
The Queensland Health website describes Julian’s Key as primarily for people with intellectual or cognitive disability but could benefit anyone who might have difficulty communicating in a health and hospital setting. The tool is available as a mobile application, an editable PDF and a paper-based form.
More information on the tool and eligibility to participate in the evaluation is available here.
The Agency for Clinical Innovation has created Say Less, Show More, a series of photo stories (visuals) to support children, young people and adults, including those with a disability, during routine medical procedures.
There is an E-learning package to help health professionals learn about using visuals, and other support materials, promotional tips, posters and postcards.
You can also read how this initiative is based on collaborative partnerships between health and disability sectors.
The new Advance Project – Dementia, led by HammondCare and funded by the Australian government, provides free, practical, evidence-based training and resources that make it easier for aged care and primary care professionals to initiate courageous end-of-life conversations and assess the palliative care needs of people living with dementia, to enable better care.
The Advance Project Dementia Toolkit on the Advance Project – Dementia website has been specifically designed for clinicians, managers, and care workers in aged care and primary care settings, to build greater confidence and skills in advance care planning and palliative care. The new dementia specific training and resources have been informed by literature reviews and extensive input and feedback from an expert advisory group, general practitioners, nurses, allied health professionals, aged and primary care managers, caseworkers, and people living with dementia and their families.
The ultimate goal of The Advance Project – Dementia is to enable people living with dementia to have the opportunity to express their needs and preferences for care at the end of life, and have access to palliative care and support for their families and carers.
The Centre for Dementia Learning has launched a mobile app, Ask Annie, for home and community support workers caring for people living with dementia. It provides self-paced learning through videos, interactive quizzes and practical tips to build their dementia support skills. A free trial is available on their website, which explains that “Ask Annie helps users understand how people living with dementia may be communicating their unmet needs through behaviours”.
The Nature Reviews Disease Primers journal has an article on Delirium which provides a comprehensive summary with sections on epidemiology; mechanisms/pathophysiology; brain energy metabolism; inflammation; drugs, stress and neurotransmitter imbalance; neuranatomical substrates and failure of network connectivity; diagnosis, screening and prevention; assessment in different settings; ultra-brief screening tools; assessing delirium severity; non-pharmacological and pharmacological interventions; management; treatment in different settings; quality of life; and outlook.
The article can be downloaded as a PDF, and includes diagrams.
Dementia Training Australia is a website from a consortium of experts in dementia care and workforce training. Funded by the Australian Government, it provides dementia-specific training for aged care, health care professionals, undergraduate trainees and a range of other professionals and community service providers. The website provides a wide range of evidence-based eLearning training courses and lectures, as well as resources relating to dementia education.
The View From Here course was specifically developed for the acute care setting. Dementia Training Australia also provides design consultancy services to hospitals, and can work with health service organisations to develop tailored training packages.
NPS MedicineWise has a free webinar providing practical information on overcoming barriers when providing care to people living with dementia.
You will need to have or create a free account with NPS MedicineWise to watch the webinar.
The Caring for Cognitive Impairment campaign website has a large number of videos useful for personal or group education.
Insights into the Hospital Dementia Experience, is a positively evaluated experiential workshop specifically designed by Dementia Australia to assist staff working in a hospital or Multi-Purpose Service (MPS) setting. Hospital or MPS educators can obtain a facilitators toolkit.
Learn about Delirium is a QUT self-paced online course about delirium and delirium superimposed on dementia.
The Caring for Cognitive Impairment campaign website has a page dedicated to online learning programs from across Australia.
The Portal of Geriatrics Online Education is a free collection of geriatrics educational materials contributed by experts for educators and learners.
Dementia Care Training has developed a set of new learning modules for providing care to older people in emergency departments.
Understanding Dementia is a free seven week online course provided by the Wicking Research and Education Centre, University of Tasmania.
The Victorian government funds Seniors Rights Victoria to provide an Elder Abuse Helpline.
The Elder Abuse Prevention Unit is a state-wide service to response to the abuse of older people in Queensland.
The My Aged Care website provides state and territory contact details for information and support for elder abuse concerns.
The Northern Territory has an elder abuse information line.
The NSW Elder Abuse Helpline is a confidential helpline offering information, advice and referrals for people who experience, witness or suspect the abuse of older people living in their homes in NSW.
SA Health includes elder abuse as a topic on its website with links to the elder abuse prevention phone line.
The Alzheimer’s WA website has an interactive Dementia Enabling Environments page that allows you to click on each room in the hospital setting. In each room you can click on each area to see how the environment principles have been applied.
At Home with Dementia provides practical, general suggestions for addressing problems commonly faced by people living with dementia in the home environment, noting that solutions will be different for each individual and will depend on the particular difficulties they are experiencing that will change over time.
Clinicians provide useful suggestions for creating a calm, safe supportive environment for people with cognitive impairment in hospital.
Dementia Training Australia provides environmental design resources and an environmental design education service to all states and territories.
This webinar explores a number of aspects of improving the hospital environment including environment design principles and putting these principles into practice.
Key Principles for Improving Healthcare Environments for People with Dementia provides design guidance for new and refurbished inpatient units and is an update of the Adapting the Ward for People with Dementia booklet first published by NSW Health in 2003.
This video from the Confused Hospitalised Older Person’s (CHOPS) Program provides ideas for creating supportive care environments for people with cognitive environment.
The Dementia Enabling Environment Project (DEEP) Virtual Information Centre provides practical tips, guides and resources to modify homes, care environments, gardens and public buildings to help a person with dementia to lead as full and independent a life as possible.
Most people in Australia will first report symptoms of dementia to a family doctor or general practitioner. A resource from the resource from the Cognitive Decline Partnership Centre (CDPC), for use in general practice titled People with dementia: a care guide for general practice assists with making decisions about how to provide the best care for a person with dementia. The guide addresses six priority topics that a GP or primary care worker is likely to encounter when providing care for a person with a dementia diagnosis.
The topics covered in the guide include:
The 2016 NHMRC Partnership Centre for Dealing with Cognitive and Related Functional Decline in Older People Clinical Practice Guidelines and Principles of Care for People with Dementia, provides recommendations for the assessment and management of behavioural and psychological symptoms of dementia.
This Clinical Care Standard and supporting resources provide guidance to consumers, clinicians and health services on delivering appropriate care to people with a hip fracture.
The Caring for Cognitive Impairment website hosts stories and videos that have been shared by individuals working in hospitals caring for those with cognitive impairment.
What it has meant for me as a clinician – extract from Ms Strahand’s interview.
Two videos are available on the Agency for Clinical Innovation website that show how health outcomes for people with intellectual disability can be improved when fear, anxiety or mental health concerns prevent them from getting the medical help they need.
Captioned versions of the videos are also available.
Equality, Capacity and Disability in Commonwealth Laws (ALRC Report 124) published by Australian Law Reform Commission in 2014 is the final report on the Inquiry about people with disability having an equal right to be supported to make decisions for themselves.
A summary report and an Easy English summary is also available.
Agency for Clinical Innovation has produced a series of videos to help health professionals understand the care needs of a person with intellectual disability. The following are relevant to hospital admissions:
The Agency for Clinical Innovation website has many Intellectual Disability Network Resources.
Resources can be browsed by type – guidelines, tools, frameworks, articles, and more – or subcategory – such as consumer information, education and training, research, children’s services.
Examples of resources available include:
Living with Intellectual Disability and Dementia video produced Alzheimer’s Australia NSW, provides a resource for services working in the disability sector and for family members and friends who are concerned about signs of cognitive decline in a relative or friend who lives with an intellectual disability.
NOFASD Australia is the website for the national peak organisation representing the interests of individuals and families living with Fetal Alcohol Spectrum Disorders (FASD) and provides a range of information resources.
West Moreton Hospital and Health Service has developed a patient/carer-controlled communication tool to improve communication for people with disability, their families and carers.
The Queensland Health website describes Julian’s Key as primarily for people with intellectual or cognitive disability but could benefit anyone who might have difficulty communicating in a health and hospital setting. The tool is available as a mobile application, an editable PDF and a paper-based form.
More information on the tool and eligibility to participate in the evaluation is available here.
The Cognitive Decline Partnership Centre has released a new resource for use in general practice titled People with dementia: A care guide for general practice. The guide is to assist with making decisions about how to provide the best care for a person with dementia, and addresses six priority topics that a general practitioner or primary care worker is likely to encounter when providing care for a person with a dementia diagnosis.
The topics covered in the guide include:
The guide was released at the Australasian Association of Gerontology on Thursday 7 November 2019.
Mencap is a UK organisation that provides advocacy, support and resources for people living with a learning disability.
Their consumer resource about reasonable adjustments explains the right to be treated equally by hospitals making reasonable adjustments such as providing information in Easy Read or allowing more time for an appointment. This resource may also be suitable for people living with cognitive impairment or intellectual disability, who may also require reasonable adjustments to receive high quality healthcare.
An example of a policy response to the needs of people with a disability is the NSW Ministry of Health Policy Statement 2017, which includes establishing protocols with key local agencies.
The Agency for Clinical Innovation has created Say Less, Show More, a series of photo stories (visuals) to support children, young people and adults, including those with a disability, during routine medical procedures.
There is an E-learning package to help health professionals learn about using visuals, and other support materials, promotional tips, posters and postcards.
You can also read how this initiative is based on collaborative partnerships between health and disability sectors.
The Admission2Discharge (A2D) Together Project aims to improve the hospital experience for people with intellectual disability through improved communication.
It features an admission to discharge folder (A2D), created by a NSW partnership between Family and Community Services (Disability) at South East Sydney District, South Eastern Sydney Local Health District, Carer Program, and Metro-Regional Intellectual Disability Network (MRID). The folder facilitates timely transfer of relevant and current information to enable hospital staff to meet the needs of people with intellectual disability in hospital.
American Geriatrics Society updated Beers Criteria for potentially inappropriate medication use in older adults is an article published in the Journal of the American Geriatrics Society in 2012.
A set of 4 quick reference cards produced by Dementia Training Australia, that summarise commonly prescribed medications in Australian residential aged care that may adversely affect cognition. Information includes what side effects to look out for, and circumstances that lead to increased risk of side effects particularly altered cognition.
This NSW Health guide provides deprescribing information that can be applied verbally or in writing, between clinicians, patients and carers.
Guidelines for clinicians when considering de-prescribing of dementia medications.
Health Victoria website provides advice on medicine use for older people in hospital.
The Older Persons Advocacy Network (OPAN) website has a videos, written resources and webinars about the right everyone has to make an informed choice about the medications they take. These resources include information about understanding informed consent, appropriate use of antipsychotics and sedative medications, and where to go for help and support.
There is also a booklet and brochure.
Medication appropriateness tool for co‐morbid health conditions in dementia: consensus recommendations from a multidisciplinary expert panel (Intern Med J, 46: 1189-1197) – This article provides expert consensus guidance about medication use for people with dementia.
Health service organisations need to ensure that medicine-related information is up to date and available to clinicians at the point of decision-making. Medicine-related reference materials could include versions of:
A medication management app is available from Dementia Training Australia that includes information relating to the optimal use of antipsychotic medications in residential aged care, including medication management plans, monitoring and side effects.
The second edition of the app details medications that may adversely affect cognition, which may be useful when exploring reasons for changes in cognition in residents with dementia who are using these medications.
See also Antipsychotics under Information A-Z
The Commission’s website has advice on medication reconciliation. There is a short video available about the use of medicines in Australia.
NPS Medicinewise provides information on making treatment decisions, on managing medicines and cognitive impairment. Key resources include
Primary Health Tasmania website has a number of fact sheets regarding de-prescribing of different medications.
This webinar covers key elements including medication reconciliation and review, appropriate prescribing and consumer involvement along with illustrating the importance of a team approach.
The Caring for Cognitive Impairment campaign website provides information on the NSQHS Standards (second edition) and specific actions relating to cognitive impairment under the Comprehensive Care Standard.
This webinar discusses the inclusion of cognitive impairment in NSQHS Standards and offered an opportunity for participants to consider their role as lead cognitive champions.
Intervene is an initiative of HammondCare’s Dementia Centre to support evidence-based pain management. A three-part education video series for frontline staff working in the aged care sector is available, along with other educational tools, resources and a final report summary of the project’s findings and recommendations.
Pain is sometimes overlooked in older people in hospital. Vic Health’s Older people in hospital information includes a page on pain, with resources on identifying, managing and treating pain, and discharge planning.
This study found that for patients receiving palliative care, patients who had individualised management of precipitating factors for delirium and supportive strategies had better outcomes than patients who received risperidone or haloperidol.
Reference: Agar MR, Lawlor PG, Quinn S, Draper B, Caplan GA, Rowett D et al. Efficacy of oral risperidone, haloperidol, or placebo for symptoms of delirium among patients in palliative care: A randomized clinical trial. JAMA Internal Medicine 2017; 177: 34-42.
Palliative Care Australia, the national peak body for palliative care has a website with information for patients, carers and health professionals on understanding palliative care and includes a service directory and relevant policies and publications. The advance care planning page has a map of Australia that links to specific advance care planning terms and steps for each state and territory.
Dr Ryan shares strategies for providing high quality care for people with cognitive impairment in the emergency department.
We are developing a resource to engage patients – extract from Ms Summers interview.
We can manage delirium better – extract from Ms Coyle’s interview.
Partnering with Consumers Standard is one of eight in the National Safety and Quality Health Service (NSQHS) Standards. Partnering with consumers is critical when caring for people with cognitive impairment or at risk of delirium.
The webpage on the Commission’s website provides information on partnering with consumers, which is about healthcare organisations, healthcare providers and policy-makers actively working with people who use the healthcare system to ensure that health information and services meet people’s needs.
An Australian Government funded manual developed through a collaboration between the University of Melbourne and Melbourne Health in Victoria that provides practical information that medical, nursing, allied health staff and volunteers can use to adopt and implement reminiscence within everyday care of people with dementia who are hospitalised.
This webinar will be of interest to anyone who would like to learn more about partnering with people with cognitive impairment, their carers, support people and families.
The Commission has developed four new resources for health service organisations and clinicians to help improve care of people with cognitive impairment. Actions for Clinicians and the NSQHS Standards user guide for health service organisations providing care for patients with cognitive impairment or at risk of delirium provide a care pathway.
The Centre for Dementia Learning has launched a mobile app, Ask Annie, for home and community support workers caring for people living with dementia. It provides self-paced learning through videos, interactive quizzes and practical tips to build their dementia support skills. A free trial is available on their website, which explains that “Ask Annie helps users understand how people living with dementia may be communicating their unmet needs through behaviours”.
Person-centred care is widely recognised as a foundation to safe, high-quality healthcare. The Commission has developed seven key attributes shared by healthcare organisations that are high-performing in person-centred care.
Most people in Australia will first report symptoms of dementia to a family doctor or general practitioner. A resource from the resource from the Cognitive Decline Partnership Centre (CDPC), for use in general practice titled People with dementia: a care guide for general practice assists with making decisions about how to provide the best care for a person with dementia. The guide addresses six priority topics that a GP or primary care worker is likely to encounter when providing care for a person with a dementia diagnosis.
The topics covered in the guide include:
This article highlights potential strategies for improving the experience of people with dementia undergoing imaging procedures.
The Recognising and Responding to Acute Deterioration Standard is one of eight in the National Safety and Quality Health Service (NSQHS) Standards aims to ensure that acute deterioration in a person’s physical, mental or cognitive condition is recognised promptly and appropriate action is taken.
See also Chapter 10 ‘Recognising and Responding to Acute Deterioration Standard’ in the National Safety and Quality Health Service Standards User guide for health service organisations providing care for patients with cognitive impairment or at risk of delirium.
This is a NSW Refugee Health Service resource to provide guidance and information to aged care workers providing care to people from a refugee or refugee-like background.
4AT is a screening tool for both delirium and cognitive impairment that is free to download and use. The months of the year backward test and the 4-item Abbreviated Mental Test, which are brief tests for cognitive impairment, are also incorporated.
See pages 18-20 of A better way to care – safe and high-quality care for patients with cognitive impairment or at risk of delirium in acute health services (Second edition).
The NSW Agency for Clinical Innovation has a resources page with screening and assessment tools to help identify cognitive impairment, dementia, and delirium in older people.
A video showing importance of screening for cognitive impairment.
The Victorian Department of Health’s Older People in Hospital website provides information on common cognitive screening tools including the Rowland Universal Dementia Assessment Scale (RUDAS) and the Kimberley Indigenous Cognitive Assessment (KICA).
See pages 52-56 of the National Safety and Quality Health Service Standards User guide for health service organisations providing care for patients with cognitive impairment or at risk of delirium for information on Action 5.7 Screening and assessment processes, as they relate to cognitive impairment and identifying delirium.
This video from the Confused Hospitalised Older Person’s (CHOPS) Program explains the importance of finding out about a person’s cognition and doing that through cognitive screening to establish a baseline.
Dr Ryan shares strategies for providing high quality care for people with cognitive impairment in the emergency department.
Ms Nelson provides a nursing perspective on recognising delirium in the emergency department.
“Delirium – In Intensive Care” provides delirium from an intensive care perspective.
Professor May provides a general practitioner perspective on caring for patients with cognitive impairment.
The Clinical Excellence Commission TOP 5 program supports clinician engagement with carers, to support individualised care for the person with cognitive impairment.
This webinar will be of interest to those who would like to understand how to set up and implement a person centred volunteer program within their hospital.
Volunteer Dementia and Delirium Care Implementation and Training Resource, developed by the NSW Agency for Clinical Innovation (ACI) provides a comprehensive suite of materials required to establish and implement an evidence-based dementia and delirium care hospital volunteer program.