About
111
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Introduction
Current institution
Additional affiliations
February 2016 - December 2019
January 2011 - present
Education
January 2008 - December 2012
January 2006 - December 2009
January 1989 - December 1992
Publications
Publications (111)
Objectives
Validated scales assessing dementia attitudes in Chinese populations are needed to understand the extent and nature of stigma in communities, design appropriate sociocultural interventions and assess their impact. This study was aimed at translating and validating an Australian version of the 12‐item dementia diagnosis attitude scale in...
Background
Over the past decades, self-directed models of care have been implemented throughout the world to support older people, including those with dementia, to live at home. However, there is limited information about how self-directed home care is experienced by older people with cognitive impairment and dementia, and how their thinking infor...
People living with dementia are often presumed to have no agency or capacity to act in the social world. They are often excluded from participating in research while research methodologies may not capture their embodied engagement with people and places. Yet, like everyone, people with dementia can express their agency in nuanced ways, for example,...
Cervical cancer is a preventable disease and is related to persistent health equities. Whilst several priority populations face health inequities related to cervical cancer prevention, my co‐authors and I bring special attention to those who identify as culturally and linguistically diverse (CALD). By reflecting on some of our research and work exp...
Objectives:
This paper aimed to develop a model to describe help-seeking for dementia diagnosis. The practical model is intended to guide public health interventions to increase help-seeking.
Method:
The model was developed by our multidisciplinary team based on qualitative semi-structured interviews in English (n = 33) and Chinese (n = 8) with...
Introduction
Promising evidence is emerging for the procognitive, anti-inflammatory and neuroprotective properties of dietary flavonoids, particularly anthocyanins that provide red, purple and blue plant pigments.
Methods and analysis
The ‘Food for Thought’ study is a multicentre, 6-month randomised, parallel 3-arm clinical trial. Its primary aim...
Globally, migrant and culturally and linguistically diverse (CALD) communities are known to have inequitable access to HPV vaccination. One participatory research approach used to engage CALD communities around vaccination is participatory action research (PAR), but we know little about the use of PAR to engage priority migrant and CALD communities...
Objectives:
This explorative cross-country qualitative study aims to describe experiences of receiving a dementia diagnosis and experiences of support following a diagnosis in Australia, Canada, the Netherlands and Poland.
Method:
Qualitative study using projective techniques during online focus groups, online and telephone interviews with peopl...
Background
Post‐diagnostic support for dementia is lacking in Australia and internationally. Across five countries, we co‐designed and delivered Forward with Dementia, a campaign to improve the communication of diagnosis and provision of post‐diagnostic support. This is a process evaluation of the Australia campaign which included social media, onl...
Background
Forward with Dementia is a co-designed campaign to improve communication of dementia diagnosis and post-diagnostic support.
Methods
Webinars, a website, social and traditional media, and promotions through project partners were used to disseminate campaign messages to health and social care professionals (primary audience) and people wi...
Research involving people with dementia has highlighted the need to improve engagement in the conduct of interviews and focus groups. Projective and enabling techniques may be useful and avoid some of the drawbacks associated with direct questioning. However, researcher-driven projective techniques have not been extensively tested in research with...
The significance of home is broadly recognised as representing selfhood, safety and autonomy. For older people, especially those with dementia, the ability to age in place at home can be threatened by a necessary move into a care home. Home has heightened importance for people with dementia. We know most people want to stay in their own homes, but...
Objectives:
The study aims to describe people with dementia and informal caregivers' respective experiences of support after diagnosis and compares these experiences. Additionally, we determine how people with dementia and informal caregivers who are satisfied with support differ from those dissatisfied.
Methods:
A cross-sectional survey study i...
Background
Forward with Dementia is a co-designed campaign to improve communication of dementia diagnosis and post-diagnostic support.
Methods
Webinars, a website, social and traditional media, and promotions through project partners were used to disseminate campaign messages to health and social care professionals (primary audience) and people wit...
Purpose:
This study explores the usability, usefulness and user experience of the Forward with Dementia website for people with dementia and family carers, and identifies strategies to improve web design for this population.
Methods:
The website was iteratively user-tested by 12 participants (five people with dementia, seven carers) using the Zo...
Background
The number of people with dementia in multicultural Australia is rapidly increasing. Despite its culturally diverse population, there is limited research about how people from ethnic minority groups understand and approach help-seeking and support for dementia. The aim of this study is to understand the perceptions of dementia symptoms,...
A deficit framing continues to surround the perceived capabilities of people with dementia to comprehend and engage with cartographic maps. While some people with dementia might experience issues with wayfinding and spatial orientation, this has frequently been unfairly extended to all people living with dementia. From the perspective of qualitativ...
Purpose of review:
There is increasing recognition of a service gap immediately after diagnosis for people with dementia and carers. This narrative review of models of post-diagnostic support focuses on recent developments and offers suggestions for future development. We present the current evidence for these models and consider the service compo...
Despite the positive relationship between anthocyanin-rich foods and cognitive health, a dietary deficit exists in older adults. Effective interventions require an understanding of people’s dietary behaviors situated in social and cultural contexts. Therefore, the aim of this study was to explore older adults’ perceptions about increasing their con...
Introduction
Internationally, cultural factors are associated with vaccine uptake and completion in ethnic minority communities. Whilst Australia has achieved high human papillomavirus (HPV) vaccination, little is known about how culture or ethnicity influences HPV vaccination engagement. To address these gaps, we partnered with our Local Health Di...
People with dementia and their care partners report a lack of support, treatment, and information, fragmented services, and a lack of inclusion in decisions about their care. Care planning may address these issues; however, there is scarce literature on the process or benefits of care planning for people with dementia. This review describes the lit...
Background
With the increasing incidences of dementia in aging societies, attention should be paid to the social context in which people with dementia live. One of its aspects is language transmitting beliefs, perceptions, and behavioral patterns. An analysis of understanding the diagnostic label of dementia may reveal the role of semantics in the...
Globally, there is an urgent need for solutions that can support our aging populations to live well and reduce the associated economic, social and health burdens. Implementing smart technologies within homes and communities may assist people to live well and 'age in place'. To date, there has been little consultation with older Australians addressi...
Research methods are not just for data collection, but can also be engaged in to promote more immediate benefits for participants and to create social change. This paper reports on how journey mapping was used with staff and family members of people with dementia in a residential aged care facility in regional NSW, Australia. The study was conducte...
Dementia, a global health priority, poses a disproportionately high risk to lesbian, gay, bisexual and trans plus (LGBT+)/gender and sexuality diverse people. Despite this, little research has explored the lived experience of LGBT+ people with dementia or their care partners. This scoping review aims to understand what the literature reveals about...
Purpose
This study aims to describe the development and approach of a theory-informed social marketing intervention that aimed to promote respite for carers of people with dementia. Despite a high need for respite, carers of people with dementia are often low users of available respite services. The reasons for this are complex, including knowledge...
Background
It is important to involve older people in evaluating public programmes that affect their lives. This includes those with physical and cognitive impairments (such as dementia) who may need support to live at home. Many countries have implemented new approaches to support older people to live well at home for longer. However, it can be ch...
This study used a qualitative, cross-sectional design to address a gap in understanding the perspectives and practices of care planners and case managers in supporting consumer- directed care (CDC) for community dwelling people living with dementia. Semi-structured telephone interviews were conducted with a convenience sample of n = 16 planners and...
Background:
The COGNISANCE (Co-designing dementia diagnosis and post diagnostic support) project aims to co-design and produce resources that will improve communication of dementia diagnoses and support for people living with dementia (PLWD) and care partners following diagnosis. Internationally, dementia guidelines reinforce the need for post-dia...
Introduction
Developing bodies of work in interdisciplinary dementia research are engaging with concepts of place and spatiality as they relate to the everyday experience of living with dementia (Clarke and Bailey, 2016; Odzakovic et al, 2018). Rather than focus on the ‘dis-abilities’ of a person and their effect on navigation or wayfinding, these...
Giving voice to the lived experiences of people with dementia across the globe, this text highlights the challenges presented as dementia care shifts to a community setting. Contributors address the social aspects of environment and, using a unique 'neighbourhood-centred' perspective, provide an innovative guide for policy and practice.
Thinking through dementia and place
In the Introduction to this book, we proposed that dementia and place are co-constitutive, discursively and experientially, but to date this relationship has yet to be given full consideration. This is not to overlook an extensive tradition of research into dementia and the environment, but rather to suggest that...
There is a critical need for new ways to illuminate the geospatial context of the lived experience of people with dementia in their local neighbourhoods. This chapter reports on research that used qualitative geographic information systems (GIS) to understand experiences of place for people with dementia when they are ‘out and about’ in their local...
This chapter explains how the book has demonstrated the diversity of theoretical and conceptual approaches to people living with dementia. The idea of a neighbourhood implies an urban bias that holds particular meaning within Global North nations, which also largely undermines the rural experience of living with dementia. Neighbourhood, then, becom...
This chapter highlights the importance of situations and conditions wherein people live with dementia beyond care settings. Most research on dementia primarily focuses on disorientation in time and space. In line with the pathologising perspective of dementia in police reports or newpaper articles, outdoor spaces and mobility for affected individua...
This book engages with the realities of life for people living with dementia at home and within their neighbourhoods while giving voices to the lived experiences of people with dementia across the globe, including Australia, Canada, Sweden and the United Kingdom. Moreover, the voices highlight the urgent need for changes to ensure equal access and...
Consumer‐directed care (CDC) programmes, in principle, provide consumers with choices around who provides care services to them, what services and when. However, literature around consumer behaviour of older adults, especially concerning the factors that may support home care choices, is sparse. The purpose of this study was to understand the decis...
The concept of transition is often used in health and lifecourse research to understand a significant movement from one state or place to another. While people with dementia experience more major transitions than their peers, they are often excluded from transitional care research. This study set out to develop meaningful transitional supports for...
‘Rethink Respite’ was a prospective, naturalistic cohort study conducted in the Illawarra‐Shoalhaven (NSW, Australia) to improve knowledge, attitudes and uptake of respite strategies in carers of people with dementia. A convenience sample of n = 70 carers were recruited in 2014–15 to establish a baseline for knowledge, attitudes and use of respite...
The perspective of people with dementia, particularly late-stage dementia, is often excluded from research, even from methods like Participatory Action Research (PAR), which aim to democratise research. This research note outlines how a PAR project engaged with the perspective of people with late-stage dementia in a residential aged care facility....
Human rights are increasingly being considered in Australian law reform and policy discussions on how to improve the circumstances of people living with dementia in care homes. This article enriches understanding of the views on human rights held by people living with dementia and those who support, advocate and care for them, in order to ensure th...
This paper responds to growing concerns in human rights practice and scholarship about the confinement of people living with dementia in care homes. Moving beyond the existing focus in human rights scholarship on the role of restrictive practices in confinement, the paper broadens and nuances our understanding of confinement by exploring the daily...
This Anthology is an outcome of the 'Summit on Human Rights for people with dementia living in residential aged care'. People living with dementia, care partners, advocates, lawyers, academics and other interested community members gathered at University of Technology Sydney on Friday 22 November 2019, with the aim to promote community discourse ar...
Objective:
To describe patterns of hospitalisation in the years preceding the first (index) admission coded with dementia.
Methods:
Retrospective longitudinal analysis of hospitalisation preceding an index admission for dementia for 7919 patients and a matched cohort in a regional local health district of New South Wales, Australia, from 1 July...
Background
Under-coding of dementia during hospitalisation results in an inability to identify all patients with dementia using hospital administrative data. Clinical coding can be viewed as a proxy for management; therefore, under-coding indicates dementia was not considered in the patient’s management. While under-coding of dementia is well estab...
This article explores how care homes—and, specifically, their common features such as dementia care units and locked doors and gates—impact on the human rights of people living with dementia. We suggest that congregation, separation and confinement of people living with dementia by the care home built environment constitute ‘segregation’. In the sp...
Universities can promote social impact by developing a dementia literate workforce. The Dementia Enabling University Strategy utilised a knowledge translation framework in an Australian university to inspire and support academics to engage students and consider how their skills and knowledge could contribute to the creation of more supportive envir...
New or adapted methods and tools are needed to ensure the voices of older people with cognitive impairment and dementia are included in evaluations of care services which aim to support their quality of life (QoL). In this study, cognitive interviewing practices were used with a group of 26 older service users with cognitive impairment from two ser...
Consumer‐directed care (CDC) was introduced as part of aged care policy reforms in Australia in 2012. CDC aims to promote choice and control for people with complex needs who need home care and supports. While more choices may bring benefits, information and resources are needed by people to navigate new and complex care‐related decisions. In 2017,...
Background
Research highlights the need for carers of people with dementia to acquire relevant and timely information to assist them to access appropriate respite services. Unfortunately, negative experiences of information-seeking can create additional stress for carers and contribute to delays in up-take, or not using respite services at all.
Me...
Background/aim
Engagement in meaningful occupation, including paid work is considered an important determinant of health, impacted by injury or illness. Dementia is one neurodegenerative syndrome with potential to compromise capacity for remaining engaged in paid employment. In response to ‘ageing’ populations globally, policy shifts within develop...
Objectives: Bowel screening is an effective way to promote early detection of bowel cancer. Culturally and linguistically diverse (CALD) people face considerable barriers to screening. This qualitative study explored perceptions towards, and usability of, Australia’s national bowel screening kit with members of two migrant communities.
Methods: Thi...
Participation in qualitative research frequently relies upon recall and verbal expression, which may be difficult for some people with dementia. While the use of arts-based and visual methods are transforming dementia care, exploratory research and evaluation methods have lagged behind with regard to the use of innovative qualitative approaches. Th...
Low levels of public understanding can contribute to the fear, stigma and social exclusion associated with living with dementia. Dementia friendly communities aim to address this by empowering people with dementia and increasing their social inclusion. As a part of a Community Based Participatory Action Research (CBPAR) process, a multicomponent de...
Objective:
Recent studies have identified parents and children as two target groups whom Big Food hopes to positively influence through its corporate social responsibility (CSR) strategies. The current preliminary study aimed to gain an in-depth understanding of parents and children's awareness and interpretation of Big Food's CSR strategies to un...
This study investigates staff and family attitudes towards the use of the fences that surround many aged care facilities in Australia, in the context of indefinite detention of people with dementia. This indefinite detention has been described in a report from an Australian Senate Inquiry as “a significant problem within the aged care context”, whi...
Background:
There is a growing recognition of the need to make the built environment in towns and cities more enabling for people with dementia. This study reports the development of a reliable tool to assess the support provided to people with dementia by public and commercial buildings such as council offices, supermarkets, banks, and medical ce...
Despite the importance and advantages of including people with dementia in research, there are various challenges for researchers and participants to their involvement. This article draws on the literature and experiences of a diverse group of authors, including a person with dementia, to provide recommendations about conducting research with peopl...
People from ethnic minorities often experience poorer cancer outcomes, possibly due to later presentation to healthcare and later diagnosis. We aimed to identify common cancer beliefs in minority populations in developed countries, which can affect symptom appraisal and help seeking for symptomatic cancer. Our systematic review found 15 relevant qu...
Introduction:
Dementia education programs are being developed for health professionals, but with limited guidance about "what works" in design and content to promote best practice in dementia care. Knowledge translation (KT) is a conceptual framework for putting evidence to work in health care. This narrative literature review examined the questio...
With rising life expectancies, the prevalence of dementia has increased to such an extent that it is now recognised as a National Health Priority Area. Care of the Person with Dementia responds to the urgent need for health practitioners to take an innovative approach to this challenge. The first Australian text of its kind, this book combines evid...
Background:
Any approach promoting a culture of safety and the prevention of health care-associated infections (HCAIs) should involve all stakeholders, including by definition the patients themselves. This qualitative study explored the knowledge and attitudes of health care workers toward the concept of patient empowerment focused on improving in...
Background:
Patients have, traditionally, been assumed to be the passive party in the healthcare-associated infections equation, with relatively little research focused on the patients' perspective. This study aimed to explore the attitudes of hospital patients towards patient empowerment as one of the key components of patient engagement.
Method...
Over the last decade, there has been a slow shift toward the more active engagement of patients and families in preventing health care-associated infections (HCAIs). This pilot study aimed to examine the receptiveness of hospital patients toward a new empowerment tool aimed at increasing awareness and engagement of patients in preventing HCAI.
Pati...
Context
Despite the lifesaving benefits of organ and tissue donation, a worldwide shortage of suitable and registered donors exists. Although the reasons for this shortage are multifactorial, it has been recognized that distinct barriers to registration, family discussion, and consent that require targeted intervention and action are present among...
Aim Develop and pilot test evidence-based resources for general practice training practices to enhance older patients' (65+ years) interactions with General Practice Registrars (GPRs).
In Australia, general practice trainees, referred to as GPRs, see fewer older patients and patients with chronic conditions than doctors who have completed their spe...
Background
Chlamydia trachomatis is one of the most frequently reported sexually transmitted infections (STI) in Australia, the UK and Europe. Yet, rates of screening for STIs remain low, especially in younger adults.Objective
To assess effectiveness of Chlamydia screening interventions targeting young adults in community-based settings, describe s...
Objectives:
To investigate associations between dementia-attitudes and help-seeking intentions.
Method:
An online survey of 611 Australian adults (45-60 years) assessed dementia-related attitudes and help-seeking intentions in response to two scenarios of an experience of early dementia: for themselves (Scenario 1); and for a significant other (...
The use of respite services by carers has been shown to extend the length of time people with dementia can remain living in the community with family support. However, the use of respite services by informal carers of people with dementia is often low and does not appear to match carer need. To better understand how to address carers' unmet need fo...
While many people with dementia require institutional care, having a co-resident carer improves the likelihood that people can live at home. Although caregiving can have positive aspects, carers still report a high need for respite. Despite this need, the use of respite services for carers of people with dementia is often low. This article investig...
To examine sociodemographic factors associated with attitudes regarding dementia.
A cross-sectional, convenience sample of 616 adults aged 40-65 years completed an online survey examining sociodemographic factors and dementia attitudes. The associations between sociodemographic variables and dementia attitudes were examined using general linear mod...
Addressing the use of respite services by caregivers of individuals with dementia is important to improving social support among this vulnerable group. This article uses theory to conceptualize the behavioral, normative, and control beliefs that caregivers of individuals with dementia associate with the use of out-of-home day centers for respite. I...
Understanding the beliefs that caregivers of people with dementia have in regard to the use of residential respite may inform strategies to address low service utilisation. In this article, the application of theory in qualitative research with 36 caregivers provides insight into why most delay service use. Although some believe that service use ma...
This article details results from qualitative research with caregivers in regard to the beliefs they associate with the use of in-home respite services. Outcomes are perceived by caregivers in relation to care recipient personal safety and the avoidance of negative consequences through the provision of supervision in the caregiver's absence. Use of...
Previous research indicates that older patients may be less willing to consult general practice registrars (GPRs), reducing training opportunities in chronic/complex care. This survey explores older patients' attitudes in order to inform models of interaction that would be acceptable to patients.
Ten training general practices distributed questionn...
Research suggests that older patients may be reluctant to engage general practice registrars (GPRs) in their care. The authors undertook a qualitative study of the attitudes of older patients to GPRs to investigate this issue.
Thirty-eight patients aged 60 years and over from three training practices participated in semistructured telephone intervi...
With the population ageing, it is imperative for training practices to provide general practice registrars (GPRs) with sound experience in managing the health problems of older persons, especially chronic conditions. However, it is reported that a significant proportion of these patients will be resistant to consulting registrars, with concerns reg...
Background: The physical and psychological burden of providing care for someone with dementia is well-established. Formal services can assist carers to support people with dementia to live at home longer by providing a break or respite from their responsibilities. Such an outcome is consistent with both community and government preference for older...
