Lee-Fay Low

The University of Sydney · Ageing, Work and Health Research Unit

Reablement: meeting the challenges facing dementia services Dementia is a major cause of disability. People with dementia need good support, but health and social care services are overstretched and cannot provide all the support people need. Progress with drug treatments and preventive measures will not be enough to solve the problem. We need effe...

The World Health Organization (WHO) recognizes the right of individuals with dementia and their family caregivers to access interventions that enhance their participation in society. Reablement is an approach that enables older people to participate in meaningful daily and social activities. Over the past decade, a growing body of evidence has unde...

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...

Background The health issues experienced by older people can often be severe and complex, and an increasing number are using residential aged care services to meet their care needs. High-quality nursing care is fundamental to the health and safety of aged care residents and is contingent on nurses’ accurate assessment, informed decision-making, and...

Introduction People with dementia of all ages have a human right to equal access to quality health care. Despite evidence regarding its effectiveness, many people living with dementia are unable to access rehabilitation for promoting function and quality of life. Conducted in Australia, this study was designed to (1) explore barriers to access to d...

Objectives The primary aim of this pragmatic stepped‐wedge cluster RCT was to determine the efficacy of a co‐designed dementia specialist training program (the PITCH program) for home care workers (HCWs) to improve their confidence and knowledge when providing care for clients living with dementia. Methods HCWs who provided care to clients with de...

Background Due to the need to increase social awareness about dementia and the needs of patients living with dementia in Poland, the Razem przed siebie (eng. Forward with Dementia) campaign was created. The aim of the study was to evaluate its effectiveness. Methods To disseminate key campaign messages to the target audiences (people with dementia...

506 articles were assessed for eligibility, with 29 papers derived from 26 studies included for analysis. ▪ Most articles (n=14, from 12 studies) were authored by researchers based in the UK. ▪ High methodological quality was reflected in mixed studies (n=8), quantitative studies (n=9), and qualitative studies (n=7). Gaps in lterature: No systemati...

In this article, perceived benefits, facilitators and challenges of peer support offered for and by people living with dementia are explored by comparing peer support provided by Dementia Lifestyle Coach (DLC) and Dementia Alliance International (DAI). Semi-structured interviews were conducted with interviewees from DLC and DAI. Interview recording...

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...

Objective:The Interdisciplinary Home-bAsed Reablement Program (I-HARP) integrates evidence-based rehabilitation strategies into a dementia-specific person-centred, time-limited, home-based, interdisciplinary rehabilitation package. I-HARP was a 4-month model of care, incorporated into community aged care services and hospital-based community geriat...

Background Physical activity is known to improve psychological and cognitive outcomes. Learning dance sequences may challenge cognition, partnered or group dance may benefit social interactions, and the artistic aspect may improve psychological wellbeing. Dance is an equally effective form of physical activity compared with other structured physica...

Background With the number of people with dementia dramatically increasing over time and dementia becoming a major health concern worldwide, scales have been developed to assess the stigma socially attached to this neurodegenerative disorder. There are, however, almost no available methods and assessment constructs for person-centered translation o...

Background The NHMRC‐funded Promoting Independence Through quality Care at Home (PITCH) project aimed to improve outcomes for people living with dementia and their paid and family carers via an evidence‐based dementia specialist training program for home care workers (HCWs). PITCH training was co‐designed with HCWs, family carers and people with de...

Background This project evaluated a model of care integrating evidence‐based dementia rehabilitation strategies into a time‐limited, home‐based, interdisciplinary rehabilitation package: Interdisciplinary Home‐bAsed Reablement Program (I‐HARP). The aims were: to determine I‐HARP effectiveness on functional independence, mobility, quality of life an...

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...

Introduction: Providing integrated and evidence-based support to individuals and families following a diagnosis of dementia is essential in order to optimise their quality of life and assist them to live well. Memory clinics provide multidisciplinary services specialising in the assessment and post-diagnostic treatment of people with dementia. This...

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...

Current practices and barriers to provide post-diagnostic support in Australian memory clinics: Health-professionals’ view Introduction Memory clinics are specialised services for the assessment of older people who experience cognitive or other changes. The recently published National Memory Clinics Service Guidelines includes recommendations on p...

Introduction: Psychosocial dementia interventions may be less effective when used with populations for whom they were not initially intended. Cultural adaptation of interventions aims to increase effectiveness of interventions by enhancing cultural relevance. Use of theoretical frameworks may promote more systematic cultural adaptation. The aim of...

There is a growing demand for interpreter-mediated cognitive assessments for dementia. However, most interpreters lack specialist knowledge of dementia and cognitive assessment tools. This can negatively affect the way instructions and responses are conveyed between clinicians and patients, undermining clinicians’ ability to accurately assess for c...

Background People living with dementia increasingly prefer to live in their own home as their care needs progress. Home care workers (HCWs) are essential for supporting independent living, and need training and support on how to deliver evidence‐based and best‐practice dementia care. The home care workforce is diverse, and in Australia, the number...

Objectives: Australia’s ongoing aged care reforms have re-focused service provisions from a provider-driven policy approach to a consumer-directed care focus and redirected residential care subsidies. This study aimed (i) to identify the experiences and perceptions of people involved in the governance of residential care facilities about their mana...

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,...

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...

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...

This article describes the development process of the Safe Mobilisation Program to improve functional mobility and reduce fall risk in cognitively impaired older adults with gait disorders. We drew on a systematic review, informed by a theoretical paper and data collected during a feasibility study. Data collected were field notes of observation an...

Objectives This study aimed to conduct a feasibility pilot of the Dementia Lifestyle Coach program; an individual coaching and counselling program for people recently diagnosed with dementia, to help them to adjust to the diagnosis and live well. Methods A randomised controlled pilot trial (n = 11) with wait-list control group was undertaken over...

Objectives: Since 2012, Australia has been undertaking major aged care reforms, moving from a previously service provider-focussed approach to a more consumer-oriented policy direction. There is limited research examining consumer perspectives of residential care in the reform environment particularly with respect to both clients and their familie...

Background: Prior to implementing new programmes or practices, it is essential to understand the context, barriers and enablers to support successful use. The tailored activity programme (TAP) is an evidence-based intervention provided by occupational therapists to support community-dwelling people living with dementia and their carers. The progra...

Objective: To review studies reporting on the effectiveness of psychiatry service delivery for older people and people with dementia in hospital and residential aged care. Methods: A systematic search of four databases was conducted to obtain peer-reviewed literature reporting original research published since June 2004 evaluating a psychiatry s...

The unequal effects of the COVID-19 pandemic and resulting lockdowns on mothers around the world were identified as a concern in the early months of the pandemic. Almost immediately, women decreased work hours and women researchers reported reductions in research time as research publications by women dropped precipitously. In order to examine day-...

The unequal effects of COVID-19 and resulting lockdowns on mothers around the world was identified as a concern in the early months of the pandemic. Quickly, women decreased work hours and women researchers reported reductions in research time. Meanwhile, research publications by women dropped precipitously. In order to examine day-to-day activitie...

Introduction: The number of Australian residents with dementia is projected to double by 2058, with 28% currently being migrants from non-Anglophone countries. There will be growing demand for professional interpreters for cognitive assessments and dementia-related health consultations in the future. Interpreting cognitive assessments can be chall...

Objective: While Trauma-informed care (TIC) has the potential to improve the quality of aged and dementia care, the challenge remains in translating the principles of TIC into practice. This study aimed to characterise what trauma-informed aged care looks like in practice, by learning from an aged care service acknowledged as delivering trauma-inf...

Background Memory clinics (MCs) play a key role in accurate and timely diagnoses and treatment of dementia and mild cognitive impairment. However, within Australia, there are little data available on current practices in MCs, which hinder international comparisons for best practice, harmonisation efforts and national coordination. Here, we aimed to...

Objectives: Residents living with dementia in residential aged care facilities (RACFs) have reduced access to, and opportunities for, participation in meaningful activities. This leads to increased social isolation and disengagement. Intergenerational programs aim to overcome these issues. Allied health students piloted a live-intergenerational pr...

Background Increasing both the frequency and quality of social interactions within treatments for anxiety and depressive disorders in older adults may improve their mental health outcomes and quality of life. This study aims to evaluate the clinical efficacy and cost utility of an enhanced cognitive behavioural therapy (CBT) plus social participati...

Background The majority of people with dementia are cared for by their family members. However, family carers are often unprepared for their caring roles, receiving less education and support compared with professional carers. The consequences are their reduced mental and physical health and wellbeing, and that of care recipients. This study protoc...

Ageism is an ongoing pervasive issue that can be difficult to challenge. The aims of this study were to co-design alternative frames about aging in a workshop and to explore the process participants went through using these to challenge ageism in their communities over a three-month period. Participatory action research combined with co-design were...

Introduction: Ethnicity influences dementia etiology, prognosis, and treatment, while culture shapes help-seeking and care. Despite increasing population diversity in high-income settlement countries, ethnic minorities remain underrepresented in dementia research. We investigated approaches to enhance the recruitment, and consistent collection and...

Undertaking co-design with the end users of services has rapidly evolved as the best-practice approach to program design, development and implementation. Increased interest in using participatory co-design in dementia care has drawn attention to the need for evidence-informed methods for facilitating the meaningful involvement of people with dement...

Context: The precarious work arrangements experienced by many long-term care workers have led to the creation of a “shared” workforce across residential, home, and community aging care sectors. This shared workforce was identified as a contributor to the spread of COVID-19 early in the pandemic.Objective: This analysis sought to review policy measu...

Background: Our objective was to explore what people receiving and providing care consider to be ‘good’ in-home care for people living with dementia. Methods: We conducted 36 in-depth interviews and two focus groups with key stakeholders in Australia in the first quarter of 2018. Participants included those receiving care (4 people living with dem...

Background Home care service providers are increasingly supporting clients living with dementia. Targeted and comprehensive dementia-specific training for home care staff is necessary to meet this need. This study evaluates a training programme delivered to care staff (paid personal carers) of clients living with dementia at home. Methods This stu...

This is a Living report, “wiki-style”, addressing 68 questions on characteristics of Long-Term Care (LTC) systems, impacts of COVID-19 on LTC, measures adopted to mitigate these impacts and new reforms countries are adopting to address structural problems in LTC systems and to improved preparedness for future events. It is compiled and updated volu...

Background Recent literature calls for a focus on providing quality post diagnostic dementia care (Wong & Knapp, 2020). There is dissatisfaction among people with dementia (PwD) and care partners (CP) with post diagnostic dementia support (Hagan, 2020). To improve experiences of post diagnostic support for PwD and CP, it is vital to understand what...

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...

Australia is undergoing major aged care reforms, changing from the previous service provider-driven approach to consumer-directed-care principles. In residential aged care, this resulted in significant reduction in government funding in order to support reform initiatives in home and community-based care. There has been limited research on the impa...

A large proportion of nursing home residents in developed countries come from ethnic minority groups. Unmet care needs and poor quality of care for this resident population have been widely reported. This systematic review aimed to explore social conditions affecting ethnic minority residents' ability to exercise their autonomy in communication and...

Background: The association between gait and cognition, and their combined impact on postural stability may underlie the increased fall risk in older adults with dementia. However, there are few interventions to improve functional mobility and reduce fall risks in people with cognitive impairment. Objectives: This study aims to investigate the f...

The organisational, physical and social environment within residential aged care settings greatly influence its residents' sense of autonomy, choice and control and their ability to engage in meaningful occupations. Identifying to what extent these environmental contexts are supportive and well-coordinated could assist with promoting meaningful eng...

Psychological well-being includes functioning within oneself and in relationships with others. People with dementia who struggle with self-identity, lose friendships, experience higher rates of depression and anxiety than others their age, and behaviors that may indicate psychological distress are common. Randomized controlled trials suggest that m...

Background People with dementia are not routinely offered rehabilitation services despite experiencing disability associated with the condition and accumulating evidence for therapies such as exercise, occupational therapy, and cognitive or physical rehabilitation. It is important to understand the needs and preferences of people with dementia rega...

Background Ethnic minority communities and people living with dementia have been under‐represented in epidemiological studies. Concurrently, there are limited insights into how to analyse and report on a minimum set of variables related to cultural and linguistic diversity in such studies. In light of increased cultural and ethnic diversity in nati...

Background Literature, film and news media reflect and shape social perceptions of dementia which in turn impact on dementia stigma. The aim of this paper is to systematically review papers on the depiction and frames for dementia in literature, film, mass media and social media in order to better understand cultural stigma related to dementia. Me...

To enable PROSPERO to focus on COVID-19 submissions, this registration record has undergone basic automated checks for eligibility and is published exactly as submitted. PROSPERO has never provided peer review, and usual checking by the PROSPERO team does not endorse content. Therefore, automatically published records should be treated as any other...

Objectives The tailored activity program (TAP) is an evidence-based occupational therapist-led intervention for people living with dementia and their care partners at home, developed in the USA. This study sought to understand its acceptability to people living with dementia, their care partners, and health professionals, and factors that might inf...

Background: In Australia, informal caregivers (family, friends and neighbours) play a crucial role in supporting people with dementia to remain at home. Within the community aged care policy, informal caregivers are acknowledged as assisting with managing care. However, they usually receive very limited dementia care education and training to supp...

Background and objectives: The translation of reablement programs into practice is lagging despite strong evidence for interventions that maintain function for the person living with dementia as well as improve carer wellbeing. The aim was to evaluate the implementation of an evidence-based program, Care of People with Dementia in Their Environmen...

Dance is the act of moving through space in specific sequences in a rhythmic and expressive way, usually to music. Dance involves physical, cognitive, and social activity. In healthy adults, there are physical and psychological health benefits to dancing including increased aerobic fitness, lower limb and trunk strength and flexibility, improved mo...

Background Older people with cognitive impairment are at increased risk of falls; however, fall prevention strategies have limited success in reducing fall risks in this population (Fernando E, Fraser M, Hendriksen J et al. Physiotherapy Canada. 2017; 69: 161–170). We aim to present a model of factors contributing to gait and falls in older adults...

Background and objectives: Older adults' self-perceptions of aging and being older can influence well-being and quality of life. This systematic scoping review aimed to map out current research on older adults' self-perceptions of aging and being older. Research design and methods: The scoping review followed Arksey and O'Malley's methodological...

Background: Older people with cognitive impairment are at increased risk of falls; however, fall prevention strategies have limited success in this population. The aim of this paper is to review the literature to inform a theoretical framework for fall prevention in older adults with dementia. Summary: A narrative review was conducted on fall ri...

Global population ageing has meant a rapid increase in the numbers of older people with dementia, most of whom live in their own homes. Staying at home is an important determinant of health and well‐being. As care needs increase, the quality of community support which older people receive directly influences their capacity to remain in their own ho...

Introduction: Both genetic and nongenetic factors contribute to the risk profile of young onset dementia (YOD), but risk factors often co-occur. This matched case-control study examined whether nongenetic risk factors cluster together, to inform targeted prevention efforts. Methods: Ninety-six participants with non-autosomal-dominant degenerativ...

Description of an intergenerational program at Scalabrini Bexley which sees young people and older adults sharing a home.

Background: A major gap exists internationally in providing support to maintain functional and social independence of older people with dementia living at home. This project evaluates a model of care that integrates evidence-based strategies into a person-centred interdisciplinary rehabilitation package: Interdisciplinary Home-bAsed Reablement Pro...

Objectives: To test feasibility and potential effects of the interdisciplinary Home-bAsed Reablement Program (I-HARP) that integrates evidence-based strategies and cognitive rehabilitation techniques into a dementia-specific, bio-behavioural-environmental intervention. Methods: A parallel-group randomised controlled pilot trial was conducted in Syd...

This letter comments on the letter by Major et al.

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,...

The importance of better care integration is emphasized in many national dementia plans. The inherent complexity of organizing care for people with dementia provides both the justification for improving care integration and the challenges to achieving it. The prevention, detection, and early diagnosis of cognitive disorders mainly resides in primar...

Background and Objectives Multidisciplinary rehabilitation is not incorporated into the usual care pathway for dementia despite increasing demand from key advocates. Clinician views regarding the relevance of rehabilitation in dementia care are not well known. This qualitative study explored the perspectives of health professionals regarding barrie...