The Australian Government Department of Health is now funding the DCRC project to update these resources, to be completed by December 2022. The expert advisory group to the project includes representation from those with lived experience of dementia and health professionals experienced in supporting people with dementia who present with changed behaviours.

In 2011 the Australian Government funded the Dementia Centre for Research Collaboration (DCRC) at UNSW Sydney to develop the document Behaviour Management, A Guide to Good Practice, Managing Behavioural and Psychological Symptoms of Dementia (BPSD Guide)*.

Further resources were developed based on the evidence and practice-based content of the BPSD Guide including:

• A Clinician’s Field Guide to Good Practice
• A Guide for Family Carers 
• The BPSD Guide app for clinicians
• The Care4Dementia app for family and frontline carers (both apps currently have limited functionality due to operating system updates)

The DCRC is seeking consultation with care partners, clinicians, hands-on care staff and service providers across Australia, particularly those who have used the current DCRC BPSD resources. Your input will help ensure the updated resources meet the needs of the targeted audiences. If you are willing to participate in a short phone or Zoom interview, or you prefer to email your comments, please contact Kim Burns at DCRC (k.burns@unsw.edu.au). You can also email Kim to request hard copies (remaining stocks of some versions are limited).

* The terms Behavioural and psychological symptoms of dementia and BPSD are used respectfully. Dementia terminology has changed since the BPSD Guide was published and this will be reflected in the updated versions. Please see article published in the International Journal of Geriatric Psychiatry, Language paradigms when behaviour changes with dementia: #BanBPSD (Cunningham et al. 2019). For more information on terminology, please consult the Dementia Language Guidelines produced by Dementia Australia.

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The Dementia Centre for Research Collaboration (DCRC) will cease operation on December 23, 2021, and we want to take this opportunity to thank all our members, colleagues, and stakeholders across Australia and internationally for your important contribution to dementia research.

Since 2006 the initiative has supported hundreds of researchers with small and large research grant funding and provided forums, conferences, special interest groups and other capacity building activities and research enrichment events.
The DCRC has championed dementia research and knowledge translation both in Australia and worldwide. With a broad and inclusive focus across dementia prevention, treatment, care and living with dementia and we have supported the meaningful involvement of people living with dementia in all our activities.

Our sincere thanks to all who have been part of the DCRC network since 2006. We thank you for your commitment to dementia research and for all you do to improve the lives of people living with dementia. We hope you will join us in celebrating DCRC achievements at an event later in the year.

Henry Brodaty, Kaarin Anstey, Elizabeth Beattie
DCRC Directors

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The Dementia Centre for Research Collaboration (DCRC) is pleased to announce the successful applicants in the latest round of DCRC pilot grants.

Seven pilot projects will receive $75,000 each to conduct ground-breaking dementia research. Five of the seven projects are co-funded in partnership with the Dementia Australia Research Foundation.

The seven DCRC pilot grants have been awarded to Dr Linda Steele, Dr Deborah Brooks, Dr Leander Mitchell, Dr Kirsten Moore, Dr Suraj Samtani, Dr Sarah Wallace and Dr Melinda Jackson.

These grants are highly competitive and sought after in the research sector, and provide vital insights into reducing dementia risk, improving accurate and timely diagnoses and establishing treatment and care options for people who live with dementia.

In making this announcement, DCRC Directors, Professors Kaarin Anstey, Elizabeth Beattie and Henry Brodaty congratulate the recipients on their outstanding proposals and thank all applicants.

“Neglect and abuse of people living with dementia is a systemic problem in residential aged care,” said Dr Linda Steele, senior lecturer at the University of Technology Sydney.

“Those affected have been unable to access justice, healing and closure through the courts and it inflicts significant harm on survivors, care partners and the broader dementia community.”

“My research project explores the need to redress the wrongs of past neglect and abuse beyond individual court action.

“For example, through compensation and psychosocial support, memorials, national apologies and community education. This action can then facilitate justice, healing and enhanced well-being for survivors, as well as protections for future aged care and legal systems.”

Dr Deborah Brooks is a Project Coordinator at the Dementia Centre for Research Collaboration, Queensland University of Technology in Brisbane and her research explores the Residential Care Transition Module (RCTM).

“Many people with dementia eventually move into residential care but making this decision and coping with admission processes can be distressing. Formal supports to help families cope during this transition are lacking, so this study aims to test delivery of a telephone/video counselling intervention to reduce stress for family carers.”

The RCTM consists of six telephone or video-link counselling sessions delivered to family carers over 12 weeks by a trained health or social care professional. It includes education about dementia and residential care facilities, dementia-specific grief counselling, stress reduction techniques, and referral to support networks.

Dr Leander Mitchell from The University of Queensland will use the $75,000 funding to develop tools to measure depression and anxiety in people living with dementia in the Torres Strait.

“Rates of dementia are almost three times higher in Torres Strait communities than the wider population and rates of depression and anxiety are also higher in First Nations populations,” Dr Mitchell said.

“Thinking and memory problems can be present in all of these conditions but without accurate information, it can be difficult to work out whether symptoms are due to dementia or a psychological disorder.

“These tools have to be acceptable to Torres Strait people and also measure depression and anxiety accurately – doctors and health workers can then use these tools when assessing someone with thinking and memory problems to help them work out if the person has dementia or a psychological disorder and therefore what treatment is needed.”

Dr Kirsten Moore is a senior research fellow in the Melbourne Ageing Research Collaboration at the National Ageing Research Institute. Dr Moore’s study explores the burden, chronic stress and often grief that comes with caring for a family member or friend living with dementia.

“While caring for someone living with dementia is often portrayed negatively, with physical and mental health impacts associated with caring, this is not the full picture. This study will develop a resource that aims to provide a more balanced view of the experience of caring.

“We will examine the creative ways of managing daily stressors and challenges that will go some way toward countering overly negative portrayals of caring for someone living with dementia.”

Dr Suraj Samtani is a Postdoctoral Fellow at the Centre for Healthy Brain Ageing (CHeBA) and his project focuses on working together with people living with cognitive impairments and their care partners to write a social skills training manual specifically designed for older adults living with dementia.

“Many older adults with cognitive impairment have difficulties with recognising emotions and reacting in a socially appropriate way. Most treatments developed for dementia focus on improving memory and language. So far, there is no treatment that helps people recover or maintain social skills as their cognitive abilities decline.

“My hope is that people living with cognitive impairments can reconnect with others and experience the joy of socialising once again. One person living with dementia said to me: “I worry that other people will laugh at me and say I don’t say things that make sense or I repeat myself.”

Dr Melinda Jackson is a Senior Lecturer and Sleep Psychologist at the Turner Institute for Brain and Mental Health, Monash University and her project examines sleep disturbance in both the care giver and the person living with dementia.

“Poor sleep is experienced by two thirds of caregivers and is associated with depression and lower quality of life.

“Over 200,000 Australians provide informal assistance and caregiving to people with dementia. Improving sleep and mood of caregivers is an important step towards increasing their overall quality of life and improving their experience with caring for the person with dementia.”

“The Royal Commission into Aged Care Quality and Safety has exposed shocking stories of poor care, abuse, and neglect,” said Dr Sarah Wallace, speech pathologist and NHMRC Emerging Leadership Fellow at The University of Queensland.

“This is very concerning for people with dementia, as they are at greater risk of abuse and may also have trouble communicating that something is wrong.

“More than half of people who receive aged care services have dementia, so we need to find the best ways to help people with dementia to provide feedback, make complaints, and have conversations about their care.

My project will work in partnership with people with dementia, their families, carers and health professionals to design a set of free resources to engage in important conversations about their care and support.”

Funded by the Australian government, the DCRC’s primary research foci within the broader topic of dementia research are prevention, assessment and diagnosis, intervention and treatment, living with dementia and care, with a particular investment in translation of knowledge into care and practice.

The DCRC gratefully acknowledge the assistance of the Dementia Australia Research Foundation Scientific Panel in reviewing the applications and awarding the grants. Further information about the Foundation including previous grant rounds and outcomes can be found at: https://www.dementia.org.au/research.

To get in touch with any of the grant recipients, please contact Alex McTavish, Media Communications Coordinator at DCRC: alex.mctavish@qut.edu.au or 0406 858 882.

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The grants, of up to $50,000 each, have been awarded to Dr Claire O’Connor, Dr Jane Sluggett , Dr Christine While, Associate Professor Lyn Phillipson, Dr Loren Mowszowski, Associate Professor Susan Slatyer and Trinidad Valenzuela.

The primary purpose of the DCRC Implementing Research Evidence into Practice grant scheme is to support the implementation into practice of an existing knowledge product or program that has previously been developed and piloted.

In making this announcement, DCRC Directors, Professors Kaarin Anstey, Elizabeth Beattie and Henry Brodaty congratulate the recipients on their outstanding implementation proposals and thank all applicants.

Claire O’Connor (UNSW), Hammond Care – Implementing Arts on Prescription (AoP)@Home for people living with dementia and their family carers.

Over time, accessing community services and maintaining hobbies becomes more difficult for people living with dementia and their family supporters. This project aims to bring Arts on Prescription to people’s homes (AoP@Home), whereby professional artists will actively engage both the person with dementia and their family supporter(s) in making art using their preferred art form, such as music, visual arts, drama or singing.

Janet Sluggett, University of South Australia – Simplifying medication regimens for residents of Australian aged care facilities.

This project will assist with translation of medication simplification into usual practice by doctors and pharmacists. It will validate a tool for simplifying medications among GP’s and geriatricians and examine if pharmacists are simplifying medication regimens as part of their usual clinical practice in aged care facilities.

Christine While, LaTrobe University – Will it work here? Improving knowledge translation outcomes in residential aged care by enhancing readiness for implementation.

This project aims to adapt a knowledge product called Will it Work Here: a decision maker’s guide to adopting innovations. The adaptation will be specific to assessing readiness for knowledge translation in the Australian residential aged care sector. The resulting tool will enhance the uptake and adoption of evidence into practice and it will promote involvement of people with dementia and their family in the development of quality service provision.

Lyn Phillipson, University of Wollongong – Adaption, implementation and evaluation of the ‘Talking Mats for Supported Home Care Planning’ intervention for people with dementia.

This project focuses on training within two aged care providers to use ‘Talking Mats’ with their home care clients to promote greater engagement of people with dementia in the active planning of consumer directed care packages. We aim to understand what barriers and supports exist to make Talking Mats part of their everyday care planning practices.

Loren Mowszowski, University of Sydney – Improving patients’ access to evidence-based dementia risk reduction with an individualised Healthy Brain Ageing program.

This project represents a critical step in facilitating the implementation of more personalised Healthy Brain Ageing interventions in memory clinics across Australia through the Australian Dementia Network, thus changing the landscape of proactive healthcare for people with Mild Cognitive Impairment, and, in turn, improving their well-being and quality of life.

Susan Slatyer, Murdoch University – Implementing the ‘Focus on the Person’ form: A partnership approach to person-centred hospital care for people with dementia.

This project will implement the ‘Focus on the Person’ form to provide an opportunity for families to inform the person-centred care of people with dementia in hospital, and potentially improve outcomes for this vulnerable group.

Trinidad Valenzuela, University of Sydney – Frailty Reduction via Implementation of Exercise, Nutritional support and Deprescribing Project: The FRIEND Project.

The FRIEND project aims to establish integrated processes and pathways within a residential facility’s operating procedures that enable early identification and effective reduction of frailty via collaborative staff training and support for the incorporation of established strategies to mitigate the 3 remediable contributing factors of: sarcopenia, malnutrition, and potentially harmful medication burden, as well as improved quality of life, mood, and mobility among the targeted residents.

Funded by the Australian government, the DCRC’s primary research foci within the broader topic of dementia research are prevention, assessment and diagnosis, intervention and treatment, living with dementia and care.

To get in touch with any of the grant recipients, please contact Alex McTavish, Media Communications Coordinator at DCRC: alex.mctavish@qut.edu.au or 0406 858 882.

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“The Royal Commission into Aged Quality and Safety has highlighted the over-reliance on chemical restraint as one of three areas for immediate action within aged care,” said Professor Bell.

The Royal Commission has found the current aged care system does not deliver uniformly safe, quality care for older Australians and in many cases, relies too heavily on psychotropic medications including antipsychotics, benzodiazepines, antidepressants, mood stabilisers and opioids.

“We propose to adopt, adapt, update and develop guidelines on psychotropic medications to incorporate best available evidence, including for Aboriginal and Torres State Islander peoples, people with intellectual disability and people from culturally and linguistically diverse (CALD) backgrounds.”

“Our goal is to improve care for people living with dementia,” said Professor Bell.

Implementation planning and regular stakeholder engagement will occur concurrently with the guideline development process to enhance translation and uptake.

The guideline will also consider clinical, social and legal dimensions of medication use, as well as non-pharmacological alternatives to psychotropic medications including person-centred approaches.

“The Dementia Centre for Research Collaboration (DCRC) has funded this guideline development in response to the high use of psychotropic medications in residential aged care facilities and the recommendation from the Royal Commission into Aged Care to avoid chemical restraints. Over fifty percent of residents are on at least one psychotropic medication including about a quarter of residents on antipsychotics which can have serious side effects”, said Professor Henry Brodaty, from UNSW Sydney, a Director of the DCRC.

Tara Quirke, one of Australia’s leading advocates for public involvement in dementia research, policy and practice will lead consumer involvement at each stage of the development process.

To find more, please contact professor Simon Bell, Director, Centre for Medicine Use and Safety, Monash University – Simon.Bell2@monash.edu | (03) 9903-9533

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Guidelines are also required for consumers (i.e. people with dementia, families/ care partners and the general public) so they may be involved in the decision-making process regarding care.

DCRC will provide up to $200,000 for this project and applications close Friday 17 July 2020, 5:00pm EST.

For further information please contact Tiffany Jessop at dcrcGrants@unsw.edu.au.

Background

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