Phillipson, Lyn

Top Publications

Year	Title
2019	A Cohesive Research Approach to Assess Care-Related Quality of Life: Lessons Learned From Adapting an Easy Read Survey With Older Service Users With Cognitive Impairment Published in International Journal of Qualitative Methods
2018	More than talking: A scoping review of innovative approaches to qualitative research involving people with dementia. Published in International Journal of Qualitative Methods
2016	Reflections and recommendations for conducting in-depth interviews with people With dementia Published in Qualitative Health Research
2019	Involvement of people with dementia in raising awareness and changing attitudes in a dementia friendly community pilot project Published in Dementia: the international journal of social research and practice
2017	The development and testing of the dementia friendly communities environment assessment tool (DFC EAT) Published in International Psychogeriatrics
2015	Dementia attitudes and help-seeking intentions: an investigation of responses to two scenarios of an experience of the early signs of dementia Published in Aging and Mental Health
2014	Correlates of dementia attitudes in a sample of middle-aged Australian adults Published in Australasian Journal on Ageing
2019	Knowledge, help-seeking and efficacy to find respite services: an exploratory study in help-seeking carers of people with dementia in the context of aged care reforms Published in BMC Geriatrics
2014	A review of the factors associated with the non-use of respite services by cares of people with dementia. implications for policy and practice. Published in Health and Social Care in the Community
2013	Why carers of people with dementia do not utilise out-of-home respite services Published in Health and Social Care in the Community
2011	"Between the devil and the deep blue sea": the beliefs of caregivers of people with dementia regarding the use of in-home respite services Published in Home Health Care Services Quarterly
2011	Residential respite care: The caregiver's last resort Published in Journal of Gerontological Social Work
2019	Consumer-directed care for older Australians: Are resources identified on the Web adequate to support decisions about home-based care packages? Published in Australian Journal of Social Issues
2019	As home care packages become big business, older people are not getting the personalised support they need Published in The Conversation
2019	Creating a dementia enabling university using a Knowledge Translation approach: Innovative practice Published in Dementia: the international journal of social research and practice
2016	Applying knowledge translation concepts and strategies in dementia care education for health professionals: recommendations from a narrative literature review Published in Journal of Continuing Education in the Health Professions
2020	Human rights and the confinement of people living with dementia in care homes Published in Health and Human Rights Journal
2019	Re-design of Aged Care Environments is Key to Improved Care Quality and Cost Effective Reform of Aged and Health System Care Published in Applied Health Economics and Health Policy
2019	Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care Homes Published in Laws
2018	Staff and family attitudes to fences as a means of detaining people with dementia in residential aged care settings: The tension between physical and emotional safety Published in Australian Journal of Social Issues

Research Areas

1117 - PUBLIC HEALTH AND HEALTH SERVICES

Research Overview

A/Prof Lyn Phillipson is an award-winning public health academic who engages in research and action to promote aged and dementia friendly communities. She is known for her community engaged approach to undertaking research with impact. She uses qualitative and participatory methods to work with older people to promote understanding and change in the social, physical and service environments that contribute to their wellbeing. She has particular expertise in the development and practice of inclusive research methods with people with dementia and their care partners, as well as members of culturally and linguistically diverse communities. Finally, Lyn has expertise in the use of social marketing as an action framework to promote health in diverse areas including: dementia friendly communities, respite for carers of people with dementia; dementia risk reduction, dementia help-seeking and service utilisation and cancer help-seeking in CALD communities.

In 2018, Lyn was appointed as a World Health Organisation – International Federation on Ageing - Age Friendly Mentor which supports her contribution to the development of global capacity to create Age and Dementia Friendly Environments.
Lyn is also a leader of interdisciplinary teams - engaging researchers from many disciplines in the global challenges associated with dementia. Currently she is the leader of over 30 researchers from across 4 out of 5 UOW faculties as the Chief Investigator on the GC Dementia Keystone Program ‘Connections for Life with Dementia’.

Examples of her recent research projects include:
- Adaption, implementation and evaluation of ‘Talking Mats' for Supported Home Care Planning’ for people with dementia (Dementia Centre for Research Collaboration - Implementing Research Evidence into Practice Grant, 2021-22)
- Co-desiGning demeNtia dIagnoSis ANd post-diagnostic CarE (COGNISCANCE) – NHMRC-ARC Boosting Dementia Research Grants/JPND (2019-21)
- Exploring the impact of Consumer Directed Care on people with dementia who are recipients of Home Care Packages (NHMRC-ARC Dementia Development Fellowship) (2016-2019)
- Connections for Life with dementia (Global Challenges Keystone, UOW) (2019-2021)
- Safe and Just Futures for People living with Dementia in Residential Aged Care (Dementia Research Foundation) (2019)

Geographic Focus

Australia Country
Canada Country
Illawarra Shoalhaven region Geographic Region
Netherlands Country
Poland Country
UK Country

Selected Publications

Journal Article

Year	Title
2021	Re-imagining care transitions for people with dementia and complex support needs in residential aged care: Using co-designed sensory objects and a focused ethnography to recognise micro transitions Published In Ageing and Society
2021	The decision-making processes and preferences of older Australians purchasing home support services: An explorative inquiry using a ¿think-aloud¿ technique Published In Australian Journal of Social Issues
2020	Connections for life with dementia Published In Australian Journal of Dementia Care
2020	Ending confinement and segregation: barriers to realising human rights in the everyday lives of people living with dementia in residential aged care Published In Australian Journal of Human Rights
2020	Human rights and the confinement of people living with dementia in care homes Published In Health and Human Rights Journal
2020	Patterns of hospital utilisation in the lead up to a diagnosis of dementia: A longitudinal retrospective study of hospital dementia patients in Australia Published In Australasian Journal on Ageing
2020	Rethinking respite in Australia: a naturalistic effect study of a multicomponent community program to promote respite knowledge, attitudes and behaviours of carers of people with dementia Published In Health and Social Care in the Community
2020	Thinking through participatory action research with people with late-stage dementia: research note on mistakes, creative methods and partnerships Published In International Journal of Social Research Methodology
2020	Under-coding of dementia and other conditions indicates scope for improved patient management: A longitudinal retrospective study of dementia patients in Australia Published In Health Information Management Journal
2019	A Cohesive Research Approach to Assess Care-Related Quality of Life: Lessons Learned From Adapting an Easy Read Survey With Older Service Users With Cognitive Impairment Published In International Journal of Qualitative Methods
2019	As home care packages become big business, older people are not getting the personalised support they need Published In The Conversation
2019	Consumer-directed care for older Australians: Are resources identified on the Web adequate to support decisions about home-based care packages? Published In Australian Journal of Social Issues
2019	Creating a dementia enabling university using a Knowledge Translation approach: Innovative practice Published In Dementia: the international journal of social research and practice
2019	Factors contributing to low readiness and capacity of culturally diverse participants to use the Australian national bowel screening kit Published In Public Health Research and Practice
2019	Involvement of people with dementia in raising awareness and changing attitudes in a dementia friendly community pilot project Published In Dementia: the international journal of social research and practice
2019	Knowledge, help-seeking and efficacy to find respite services: an exploratory study in help-seeking carers of people with dementia in the context of aged care reforms Published In BMC Geriatrics
2019	Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care Homes Published In Laws
2019	Re-design of Aged Care Environments is Key to Improved Care Quality and Cost Effective Reform of Aged and Health System Care Published In Applied Health Economics and Health Policy
2019	The consumer perspective: exploring how workforce participation was maintained when symptoms of a dementia occurred and factors that enabled a positive work to retirement transition Published In Australian Occupational Therapy Journal
2019	What is the impact of dementia on occupational competence, occupational participation and occupational identity for people who experience onset of symptoms while in paid employment? A scoping review Published In Australian Occupational Therapy Journal
2018	More than talking: A scoping review of innovative approaches to qualitative research involving people with dementia. Published In International Journal of Qualitative Methods
2018	Staff and family attitudes to fences as a means of detaining people with dementia in residential aged care settings: The tension between physical and emotional safety Published In Australian Journal of Social Issues
2017	A feasibility study of team-based primary care for chronic disease management training in rural Australia Published In Australian Journal of Rural Health
2017	Are Big Food’s corporate social responsibility strategies valuable to communities? A qualitative study with parents and children Published In Public Health Nutrition
2017	Cancer beliefs in ethnic minority populations: a review and meta-synthesis of qualitative studies Published In European Journal of Cancer Care
2017	Employee perspectives: Exploring the journey from paid work to retirement due onset of a dementia Published In Australian Occupational Therapy Journal
2017	The development and testing of the dementia friendly communities environment assessment tool (DFC EAT) Published In International Psychogeriatrics
2016	'Rethinking Respite¿ for carers of people with dementia Published In Australian Journal of Dementia Care
2016	Applying knowledge translation concepts and strategies in dementia care education for health professionals: recommendations from a narrative literature review Published In Journal of Continuing Education in the Health Professions
2016	Empowering patients in the hospital as a new approach to reducing the burden of health care-associated infections: the attitudes of hospital health care workers Published In American Journal of Infection Control
2016	Erratum: Dementia attitudes and help-seeking intentions: an investigation of responses to two scenarios of an experience of the early signs of dementia. (Aging & Mental Health, 19(11), (968-977)) Published In Aging and Mental Health
2016	Reflections and recommendations for conducting in-depth interviews with people With dementia Published In Qualitative Health Research
2015	A review of current practices to increase Chlamydia screening in the community - a consumer-centred social marketing perspective Published In Health Expectations
2015	Ask, speak up, and be proactive: empowering patient infection control to prevent health care-acquired infections Published In American Journal of Infection Control
2015	Dementia attitudes and help-seeking intentions: an investigation of responses to two scenarios of an experience of the early signs of dementia Published In Aging and Mental Health
2015	Knowledge of, beliefs about, and perceived barriers to organ and tissue donation in Serbian, Macedonian, and Greek Orthodox communities in Australia Published In Progress in Transplantation: the journal for procurement and clinical transplant professionals
2015	The brave new world of older patients: preparing general practice training for an ageing population Published In Primary Health Care Research and Development
2015	‘I don’t want to cause any trouble’: the attitudes of hospital patients towards patient empowerment strategies to reduce healthcare-acquired infections Published In Journal of Infection Prevention
2014	A review of the factors associated with the non-use of respite services by cares of people with dementia. implications for policy and practice. Published In Health and Social Care in the Community
2014	Correlates of dementia attitudes in a sample of middle-aged Australian adults Published In Australasian Journal on Ageing
2014	Cultural beliefs about cancer influencing help-seeking and symptom appraisal: a meta-synthesis of qualitative findings Published In Asia Pacific Journal of Clinical Oncology
2014	Development of an evidence-based framework to support knowledge translation within the Australian Dementia Training and Study Program Published In Australian Journal of Dementia Care
2014	Promoting awareness, knowledge of and compliance with the National Children's Physical Activity Guidelines Published In Journal of Science and Medicine in Sport
2013	Addressing stigma and engaging orthodox religious communities around organ and tissue donation Published In Transplantation
2013	Using social marketing to promote cold and flu prevention behaviors on an Australian university campus Published In Cases in Public Health Communication and Marketing
2013	Why carers of people with dementia do not utilise out-of-home respite services Published In Health and Social Care in the Community
2012	Use of Day Centers for Respite by Help-Seeking Caregivers of Individuals with Dementia Published In Journal of Gerontological Nursing
2012	Use of day centers for respite by help-seeking caregivers of individuals with dementia Published In Journal of Gerontological Nursing
2011	"Between the devil and the deep blue sea": the beliefs of caregivers of people with dementia regarding the use of in-home respite services Published In Home Health Care Services Quarterly
2011	Erratum: Patients' attitudes to general practice registrars: A review of the literature (Education for Primary Care (2009) 20:5 (371-378)) Published In Education for Primary Care
2011	Residential respite care: The caregiver's last resort Published In Journal of Gerontological Social Work
2010	'Most men drink... especially like when they play sports' - alcohol advertising during sporting broadcasts and the potential impact on child audiences Published In Journal of Public Affairs
2010	General practice registrars: attitudes of older patients Published In Australian Family Physician
2009	Effective communication only part of the strategy needed to promote help-seeking of young people with mental health problems Published In Social Marketing Quarterly
2009	Factors influencing the non-use of respite services by caregivers of people living with dementia differ according to respite product Published In Alzheimer's and Dementia
2009	Older patients' attitudes to general practice registrars: a qualitative study Published In Australian Family Physician
2009	Patients' attitudes to general practice registrars: a review of the literature Published In Education for Primary Care
2006	O3¿08¿01: `RETHINK RESPITE¿: AN INNOVATIVE COMMUNITY PILOT INTERVENTION FOR CARERS OF PEOPLE WITH DEMENTIA TO IMPROVE KNOWLEDGE ABOUT, ATTITUDES TOWARD, AND USE OF RESPITE SERVICES AND STRATEGIES Published In Alzheimer's & Dementia

Chapter

Year	Title
2015	Evidence-based practice Published In Care of the Person with Dementia: Interprofessional Practice and Education Publisher Port Melbourne, Australia
2013	Cold and flu affect more than you: A social marketing campaign targeting influenza transmission on a university campus Published In Social Marketing: From Tunes to Symphonies Publisher Abingdon, United Kingdom

Conference Paper

Year	Title
2020	Improving dementia diagnosis and post diagnostic support: The COGNISANCE Project Published In Australian Dementia Forum Abstracts
2020	Multi-sensory methodologies: Participatory action research with people with late stage dementia Published In Australian Dementia Forum Abstracts
2020	Multi-sensory methodologies: participatory action research with people with late stage dementia Published In British Society of Gerontology 49th Annual Conference
2020	Preliminary development of an audit tool for the homes of community dwelling people with dementia Published In Australian Dementia Forum Abstracts
2020	Removing barriers to ethics approval: innovation by a researcher and a person living with dementia Published In Australian Dementia Forum Abstracts
2020	Supporting micro-transitions: What kinds of transitions are significant for people with late stage dementia? Published In British Society of Gerontology 49th Annual Conference
2020	Transitions and time travel: Transition types and transitional support for people with late stage dementia? Published In Australian Dementia Forum Abstracts
2019	Consumer perspectives: How younger onset dementia impacts workforce participation during onset and progression of symptoms Published In Australian Dementia Forum
2019	Under-coding of dementia over time suggests lack of active management Published In 52nd AAG Conference
2018	Action research to support dementia friendly communities: the Kiama experience Published In 51st Australian Association of Gerontology (AAG) Conference
2018	Hospitalisation patterns for older Australians in the five years prior to an index admission for dementia Published In Australian Dementia Forum
2018	Re-thinking respite with carers of people with dementia Published In 51st Australian Association of Gerontology (AAG) Conference
2018	Testing an Easy Read Version of the Adult Social Care Outcomes Toolkit to assess quality of life in community dwelling older people with cognitive impairment Published In 47th Annual Conference of the British Society of Gerontology
2018	The impact of symptoms of dementia on task competency in the workplace: Experiences of workers with dementia Published In Human Factors and Ergonomics Society of Australia 2018 Conference
2018	The quality of life of HCP recipients with cognitive impairment. Published In 51st Australian Association of Gerontology (AAG) Conference
2018	‘Rethink Respite’: an innovative community pilot project for carers of people with dementia to improve knowledge about, attitudes towards, and use of respite Published In 33rd International Conference of Alzheimer's Disease International
2017	Older consumers, choice and decision-making in community aged care Published In Emerging Health Policy Researchers Conference
2017	What happened to carer respite? Implications of community care reforms in Australia Published In 7th International Carers Conference
2016	Consumer Directed Care: Understanding and promoting participation and care outcomes for people living with dementia in receipt of a Home Care Package. Published In Australian Dementia Forum
2016	Re-imagining Respite In Aged Care and Carer Reforms Published In Re-Imagining Our Future : 49th AAG Conference 2016
2015	Building blocks for dementia friendly communities: mapping dementia friendly places and spaces in Kiama Published In 30th International Conference of Alzheimer’s Disease International: Abstract Book
2015	Evaluating the characteristics of public and commercial buildings that are enabling and disabling for people with dementia Published In 30th International Conference of Alzheimer’s Disease International: Abstract Book
2015	Flexible respite for carers of people with dementia Published In 30th International Conference of Alzheimer’s Disease International: Abstract Book
2015	Integrated literature review - workforce participation and making decisions to stay or retire Published In 30th International Conference of Alzheimer’s Disease International: Abstract Book
2015	The incorporation of Transformative Consumer Research principles within the ‘Cancer Good News’ social marketing project: A Case Study Published In World Social Marketing Conference Sydney 2015
2015	The utility of Action Research to support the development of Dementia Friendly Communities Published In 30th International Conference of Alzheimer’s Disease International: Abstract Book
2014	Improving awareness, attitudes and uptake of the Australian physical a ctivity g uidelines among primary school students, their teachers and parents Published In International Social Marketing Conference 2014 Proceedings
2014	The brave new world of older patients: preparing general practice training for an ageing population Published In 2014 General Practice Education and Training Convention: Academic paper abstracts
2014	The cancer good news project Published In International Social Marketing Conference 2014 Proceedings
2013	Knowledge translation in environmental design of residential aged care facilities for people with dementia Published In 8th National Dementia Research Forum
2013	Project Good News - Engaging priority CALD communities to reduce the stigma associated with cancer Published In Second Annual Innovations in Cancer Services & Care Conference
2013	Taking a consumer driven approach to support residential respite service use by caregivers of people with dementia Published In Alzheimer's Australia 15th National Conference
2012	Engaging psychology students in clinical placements in dementia care Published In ANZMAC 2012: Australian and New Zealand Marketing Academy Conference
2012	Preventing the spread of colds and flu: a University based social marketing campaign Published In 2012 International social marketing conference (ISM): conference proceedings
2012	Using Social Marketing to Reduce Cold and Flu Transmission On a University Campus Published In National Conference on Health Communication, Marketing, and Media
2012	Using health risk assessments to target and tailor: An innovative social marketing program in aged care facilities. Published In 2012 International social marketing conference (ISM): conference proceedings
2011	Dementia, stigma and intentions to help-seek: a pilot sutdy of Australian adults 40 to 65 years Published In Alzheimer's Australia 14th National Conference
2011	Developing Messages to Create Community Awareness of Hypertension as a Risk Factor for Dementia Published In Proceedings of the Australian and New Zealand Marketing Academy Conference
2011	Implementation and evaluation of a community-based social marketing campaign to create awareness of hypertension as a risk factor for dementia Published In Australian and New Zealand Marketing Academy Conference
2011	Why caregivers of people with dementia don't utilise out-of-home respite services Published In Alzheimer's Asutralia 14th National Conference
2010	Preparing for an ageing population: a survey of older patients' attitudes to general practice registrars Published In 2010 General Practice Education and Training Convention: Clinical and Cultural Competence: Everybody's Business
2009	Alcohol advertising during free to air television sporting Published In Sustainable Social Enterprise - International Nonprofit and Social Marketing Conference

2009	The Conference for General Practice 2009 Published In Older patients’ attitudes to general practice registrars: a qualitative study
2008	Developing Effective Communication Strategies to Promote the Help-Seeking of Young People With Mental Health Problems in the Illawarra Published In International Non-profit and Social Marketing Conference
2008	Evaluating the impact of the narrow cast marketing of 'Snake Condoms' to indigenous youth Published In Australia and New Zealand Marketing Academy Conference
2008	I eat Milo to make me run faster: how the use of sport in food marketing may influence the food beliefs of young Australians Published In Australia and New Zealand Marketing Academy Conference
2007	Awareness of alcohol advertising among children who watch televised sports Published In Australia and New Zealand Marketing Academy Conference
2007	Branding: An adolescent sun protection perspective Published In Australia and New Zealand Marketing Academy Conference

Other Publications

Year	Title
2017	Dementia Enabling University Strategy (DEUS) – A pilot project at University of Wollongong: Final report
2017	Geographic gerontology and Dementia Friendly Environments: Illuminating perspectives of people with dementia and their carers. Final Report to Alzheimer’s Australia Dementia Research Foundation
2017	MCCI CALD Carer Support Project: Social Marketing Plan
2017	Multicultural Carers Support Project – Formative Research Report: Attitudes and beliefs about carer support services in Turkish and Vietnamese communities in the Illawarra
2017	Multicultural Carers Support Project – Literature Review: Use of support services by carers of older people from CALD backgrounds: a review of abilities which support accessibility of support services in Australia.
2017	Rethink Respite: Final Report.
2017	Specialist dementia care units: an Evidence Check rapid review
2015	The effect of targeted social information resources on older patient attitudes towards GP registrars
2014	A Systematic review to update the Australian sedentary behaviour guidelines for children and young people
2012	A systematic review to update the Australian physical activity guidelines for children and young people
2012	Effectiveness of ‘signs and symptoms’ campaigns for lun g cancer: a rapid review
2012	Improving cancer outcomes among culturally and linguistically diverse communities: a rapid review of the literature
2012	The GP Dementia Risk Reduction Education Project: Literature Review and Formative Research with General Practitioners
2011	Healthy Heart Healthy Mind Dementia Risk Reduction Awareness Campaign: Final Report and Evaluation
2007	Exploring the issues associated with caring for people living with HIV/AIDS and the implications for health care worker safety
2007	Final Project Report "Range and adequacy of skills attained by participants in general practice training programs"
2007	Food Marketing to Children in Australia for the Cancer Council Australia's Nutrition and Physical Activity Committee

Investigator On

Year	Title
2021 - 2024	Food for thought: Preventing decline and improving cognition through diet and dietary advice in older people at risk Awarded by: Dementia Centre for Research Collaboration Funding Scheme: World Class Research Project Grant
2021 - 2023	Modelling the role of non-admitted care and its relationship to hospitalisation to guide system improvement for people living with dementia Awarded by: Dementia Centre for Research Collaboration Funding Scheme: Pilot Grant
2021 - 2022	Adaption, implementation and evaluation of the ¿Talking MatsTM for Supported Home Care Planning¿ intervention for people with dementia Awarded by: Dementia Centre for Research Collaboration Funding Scheme: Implementing Research Evidence into Practice Grants
2019 - 2021	Co-desiGning demeNtia dIagnoSis ANd post-diagnostic CarE Awarded by: National Health and Medical Research Council (NHMRC) Funding Scheme: Boosting Dementia Research Grants
2016 - 2020	Consumer Directed Care: Understanding and promoting participation and care outcomes for people living with dementia in receipt of a Home Care Package Awarded by: National Health and Medical Research Council (NHMRC) Funding Scheme: Dementia Research Development Fellowship
2016 - 2017	Investigating the efficacy of an online intervention aiming to increase respite use amongst carers of people with dementia: Roles of motivational enhancement and professional delivery Awarded by: Alzheimer's Australia Research (AAR) Funding Scheme: Dementia Grants Program
2015 - 2017	Improving older persons' involvement in decisions concerning their health care Awarded by: IRT Research Foundation Funding Scheme: Grant
2015 - 2016	Making flexible respite care a practical reality Awarded by: Department of Social Services Funding Scheme: Aged Care Service Improvement and Healthy Ageing Grants (ACSIHAG)
2015 - 2016	RAID: The development and trial of an innovative community-based Respite Action Intervention for carers of people with Dementia Awarded by: Alzheimer's Australia Research (AAR) Funding Scheme: Dementia Grants Program
2015	Geographic Gerontology and Dementia-friendly Environments: Illuminating the perspective of people with dementia and their carers in a local community Awarded by: Alzheimer's Australia Research (AAR) Funding Scheme: Dementia Grants Program
2012	Evaluating the impact of the introduction of a systematic approach to designing environments for people with dementia: an action research project. Awarded by: IRT Research Foundation Funding Scheme: IRT Research Fundation Grants
2012	Reducing stigma and enabling help seeking for cancer in priority CALD communities in the Illawarra-Shoalhaven Local Health District Awarded by: Cancer Institute NSW Funding Scheme: CSI Cross Divisional Grants Program
2011	Organ and Tissue Donation - Engaging Orthodox Communities Awarded by: Australian Government Organ and Tissue Authority Funding Scheme: Community Awareness Grants Program
2010 - 2011	Promoting healthy lifestyles in IRT self care communities Awarded by: IRT Research Foundation Funding Scheme: Grant
	Community led lntergenerational Playgroups: developing a best practice model and toolkit for residential care settings Awarded by: Department of Health and Ageing (DoHA) Funding Scheme: Liveable Communities Grant

Other Research Activities

Safe and Just Futures - Dementia Research Foundation Associate Investigator 2018 - 2019
Safe and Just Futures - Dementia Research Foundation Associate Investigator 2018 - 2019

Impact Story

RESEARCH AND ACTION TO PIONEER DEMENTIA FRIENDLY COMMUNITIES: The ‘Dementia Friendly Kiama’ Story
Summary
Alongside the demographic aging of the population, there is a corresponding increase in the number of people living with dementia. International estimates are 46 million, with this number expected to rise to 138 million by 2050 (ADI, 2016). The increasing prevalence of dementia will demand a shift in both the social and the physical environments within which we live. Low levels of public understanding can contribute to the fear, stigma and social exclusion associated with living with dementia. Public spaces and civic buildings are not often designed in ways which are supportive of people with dementia participating in civic life. ‘Dementia friendly’ communities aim to address this by empowering people with dementia and increasing their social inclusion. They also aim to create more supportive physical environment to enable participation.The ‘Dementia Friendly Kiama’ project (led by Dr Lyn Phillipson) and colleagues from UOW (Brennan-Horley, Fleming, Cridland, Hall and Hasan) is a partnership between the University of Wollongong (UOW) Global Challenges Program, the Kiama Municipal Council, the Kiama community and Dementia Australia. The project utilises a Community-based Participatory Action Research framework to inform the development, implementation and evaluation of a multicomponent dementia-friendly community intervention. Research in Kiama has included interviews and mapping exercises with people with dementia and their carers, community and business surveys, piloting a Dementia-friendly business toolkit and the development of an environmental assessment tool for use in the auditing of public buildings. Formative research activities guided the Action Plan of a local Dementia Alliance and Dementia Advisory Group. Evaluative research activities monitor inputs, outputs, impacts and outcomes of the project. Key achievements include:1.) The empowerment of people living with dementia – including opportunities for civic participation, social inclusion and peer support through the Southern Dementia Advisory Group and other project activities2.) Improved community understanding and increased positive attitudes with regard to the capabilities of people living with dementia. This has been achieved via education sessions (with over 1000 attendances) and the development of new information resources e.g. the ‘Dementia Illawarra’ website (<a href="www.dementiaIS.com" target="_blank" rel="noopener">www.dementiaIS.com</a>).3.) Tools to improve the physical environment –including the Dementia Friendly Communities Environmental Assessment Tool (DFC-EAT) and the establishment of the ‘OurPlace’ Kiama mapping tool (http://ourplacemap.com/)4.) Public recognition and acclaim - the project received an Excellence in Community Partnerships Award at the National Disability Awards (2016) and was recognised at the 7th Global Conference for the Alliance of Healthy Cities (2016) by the World Health Organisation.5.) The model and tools have informed Dementia Australia’s $3.9 million ‘National Dementia Friendly Communities Strategy’ (funded by the Department of Health, 2017-2021.6.) The project has also had an impact at UOW. Programs such as the ‘Dementia Enabling University Strategy’ has increased opportunities for students from all five faculties to study the impact of dementia and consider their role in the creation of a dementia friendly society. The Global Challenges project has also continued to support new interdisciplinary projects that address the societal challenges of dementia. 

Detail View

Detail View Summary View
Detail of Impact
Responding to an identified needKiama is an example of what is known in Australia as a ‘sea-change’ town. It is popular with retirees as a place to live out their senior years due to its attractive coastal location, village atmosphere and relative access to cities (Wollongong and Sydney) via a railway corridor. The larger Kiama State Electorate has a population of 69,000 people. Due to the ageing demographic profile of the region, the number of people living with dementia in the State Electorate is projected to increase from the current 1200 to almost 4000 by 2050. Kiama Council was already working towards becoming an aged-friendly city and had a strong history of community engagement. However, it had identified that it had experienced barriers to understanding the specific needs of residents with dementia and how it could better support their active aging. Participatory Processes and GovernanceThe ‘Dementia Friendly Kiama’ utilised a Community-based Participatory Action Research framework to inform the development, implementation and evaluation of a multicomponent dementia-friendly community intervention. Kiama Council was already working towards becoming an aged-friendly city and had a strong history of community engagement. This provided a strong foundation around which to engage community members and groups to support the aims of the project. In the early stages of the project, a Dementia Advisory Group (consisting of people living with dementia and their carer partners) and a Dementia Alliance (including members of the Advisory Group, representatives from partner and other relevant organisations, and interested individuals) were formed. These groups played a governance role and also supported the development, implementation and evaluation of all stages of the project. Action ResearchThe university had specific expertise with regards to social research with people with dementia (Phillipson), design and dementia (Fleming), human geography (Brennan-Horley), social marketing (Phillipson and Hall), psychology (Cridland) and information management (Hasan). The university undertook formative research with people living with dementia in the Kiama area and their carer partners, as well as members of the Kiama community.Research activities included interviews and mapping exercises with people with dementia and their carers, community and business surveys, piloting a Dementia-friendly business toolkit and the development of an environmental assessment tool for auditing of public buildings. Co-design and Collaborative ImplementationThe Dementia Advisory Group and the Dementia Alliance reviewed the formative research and developed an action plan. The University researchers were part of the broader Alliance who conducted this review and developed the aims for the action plan. Aims included increasing community awareness about dementia and local services, promoting understanding of the lived experience of dementia and reducing the stigma of dementia. It also included goals to improve the physical environment with regards to signage, way finding, pedestrian crossings and bus stop identification. Importantly the University participated as an ongoing member of the Dementia Alliance. Awareness raising and educational activities were co-designed and co-facilitated by members of the Dementia Advisory Group. This was based on their desire for local people to understand their lives and share their awareness - which has also been found in other research. The decision to support the active involvement of local people with dementia in media and educational events was also based on a previous study of dementia stigma in Australia which found that having contact with a person with dementia was associated with lower levels of personal avoidance of the condition. Education and awareness raising activities over an 18-month period included information and education sessions delivered to over 1000 community members. People living with dementia and their carers participated in all activities sharing their experiences in the media and via presentations and panel discussions at educational events. They were also involved in direct consultation with community organisations, businesses and services including the Chamber of Commerce, service clubs and general practitioners. The project attracted over 30 instances of media attention including radio, TV and print at local, Sydney and national level in which local people living with dementia frequently featured. Four websites featured information about the project, including the project website (www.dementiais.com), which promoted local information, resources and services for people with dementia, a local calendar of events and over 35 news blogs specific to the project. A Dementia Friendly Kiama brand was developed and printed material (including flyers, posters, brochures and newsletters) were widely distributed. Tools and processes for inclusive action Research and collaboration methods required adaptation to promote the inclusion of people with dementia. This had an impact on where and when activities occurred, the environment in which they occurred and the amount of information presented and the time people were given to prepare in advance.Activities in the physical environment included the initial development of the Dementia Friendly Communities Environmental Assessment Tool (DFC-EAT). The DFC-EAT was utilised by the Kiama Community College and the Kiama Library to inform environmental changes to improve accessibility in these public buildings for people with dementia. The ‘OurPlace’ Kiama web interface was also established (<a href="http://ourplacemap.com/" target="_blank" rel="noopener">http://ourplacemap.com/</a>). The online maps are used to crowd source and share information about dementia-friendly places and ideas for action. These were reviewed at Dementia Alliance meetings. The development of these tools appears a critical feature of the growing and broader impact of this project. Subsequent validation of DFC-EAT has received national and international recognition and is available for use via www.enablingenvironments.com.au and via mobile applications. ‘Our Place’ maps have also supported the development of another four dementia friendly communities across Australia since their introduction in 2015.
Field of Research
Countries / Regions
Beneficiaries

Beneficiary Quantification Description
External Partners
Evidence of Impact

Evidence Description
UOW Centres / Programs
UOW Researchers / Collaborators

Advisees

Graduate Advising Relationship

Degree	Research Title	Advisee
Doctor of Philosophy	Engaging Culturally and Linguistically Diverse (CALD) communities in school-based vaccination for Human papillomavirus (HPV)	Prokopovich, Kathleen
Doctor of Philosophy	Exploring Employee Experiences of retirement due to signs and symptoms of pementia	Andrew, Catherine
Doctor of Philosophy	What is the impact of the marketisation of the commonwealth home care packages on the lived relational experience of informal carers?	Duncan, Catherine
Doctor of Philosophy	Examining the impact of dementia on patterns of hospitalisation: A longitudinal analysis of hospital admissions in the Illawarra and Shoalhaven	Cappetta, Kara
Doctor of Philosophy (Integrated)	Investigating the value of developmental social work in social work education and the impact on diverse communities	Ray, Nandini
Doctor of Philosophy	Co-designing and Testing a Talking Mats Intervention to Enhanced Shared Decision Making in Home Care with People wtih Dementia	Blacklaw, Emma
Doctor of Philosophy	Making the Design of Home Environments More Dementia Friendly to Promote the Quality of Life of People with Dementia and their Care Partners	Concannon, Sharon
Doctor of Philosophy	Understanding and addressing the needs of people from LGBTQI+ communities in relation to aged care	Hind, Alicia
Doctor of Philosophy	¿Community Crafting¿: Exploring The Impact Of A Co-Designed Program With A Network Innovation Manager On The Well-Being Of People With Dementia And Staff In A Residential Aged Care Facility.	Rushton, Lee

Keywords

Dementia, ageing, vulnerability, qualitative methods, participatory methods, place, environment, public health

Orcid Id

http://orcid.org/0000-0003-2173-0291 (confirmed)

Scopus Id

35254541100

Top Publications

Year	Title
2019	A Cohesive Research Approach to Assess Care-Related Quality of Life: Lessons Learned From Adapting an Easy Read Survey With Older Service Users With Cognitive Impairment Published in International Journal of Qualitative Methods
2018	More than talking: A scoping review of innovative approaches to qualitative research involving people with dementia. Published in International Journal of Qualitative Methods
2016	Reflections and recommendations for conducting in-depth interviews with people With dementia Published in Qualitative Health Research
2019	Involvement of people with dementia in raising awareness and changing attitudes in a dementia friendly community pilot project Published in Dementia: the international journal of social research and practice
2017	The development and testing of the dementia friendly communities environment assessment tool (DFC EAT) Published in International Psychogeriatrics
2015	Dementia attitudes and help-seeking intentions: an investigation of responses to two scenarios of an experience of the early signs of dementia Published in Aging and Mental Health
2014	Correlates of dementia attitudes in a sample of middle-aged Australian adults Published in Australasian Journal on Ageing
2019	Knowledge, help-seeking and efficacy to find respite services: an exploratory study in help-seeking carers of people with dementia in the context of aged care reforms Published in BMC Geriatrics
2014	A review of the factors associated with the non-use of respite services by cares of people with dementia. implications for policy and practice. Published in Health and Social Care in the Community
2013	Why carers of people with dementia do not utilise out-of-home respite services Published in Health and Social Care in the Community
2011	"Between the devil and the deep blue sea": the beliefs of caregivers of people with dementia regarding the use of in-home respite services Published in Home Health Care Services Quarterly
2011	Residential respite care: The caregiver's last resort Published in Journal of Gerontological Social Work
2019	Consumer-directed care for older Australians: Are resources identified on the Web adequate to support decisions about home-based care packages? Published in Australian Journal of Social Issues
2019	As home care packages become big business, older people are not getting the personalised support they need Published in The Conversation
2019	Creating a dementia enabling university using a Knowledge Translation approach: Innovative practice Published in Dementia: the international journal of social research and practice
2016	Applying knowledge translation concepts and strategies in dementia care education for health professionals: recommendations from a narrative literature review Published in Journal of Continuing Education in the Health Professions
2020	Human rights and the confinement of people living with dementia in care homes Published in Health and Human Rights Journal
2019	Re-design of Aged Care Environments is Key to Improved Care Quality and Cost Effective Reform of Aged and Health System Care Published in Applied Health Economics and Health Policy
2019	Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care Homes Published in Laws
2018	Staff and family attitudes to fences as a means of detaining people with dementia in residential aged care settings: The tension between physical and emotional safety Published in Australian Journal of Social Issues

Research Areas

1117 - PUBLIC HEALTH AND HEALTH SERVICES

Research Overview

A/Prof Lyn Phillipson is an award-winning public health academic who engages in research and action to promote aged and dementia friendly communities. She is known for her community engaged approach to undertaking research with impact. She uses qualitative and participatory methods to work with older people to promote understanding and change in the social, physical and service environments that contribute to their wellbeing. She has particular expertise in the development and practice of inclusive research methods with people with dementia and their care partners, as well as members of culturally and linguistically diverse communities. Finally, Lyn has expertise in the use of social marketing as an action framework to promote health in diverse areas including: dementia friendly communities, respite for carers of people with dementia; dementia risk reduction, dementia help-seeking and service utilisation and cancer help-seeking in CALD communities.

In 2018, Lyn was appointed as a World Health Organisation – International Federation on Ageing - Age Friendly Mentor which supports her contribution to the development of global capacity to create Age and Dementia Friendly Environments.
Lyn is also a leader of interdisciplinary teams - engaging researchers from many disciplines in the global challenges associated with dementia. Currently she is the leader of over 30 researchers from across 4 out of 5 UOW faculties as the Chief Investigator on the GC Dementia Keystone Program ‘Connections for Life with Dementia’.

Examples of her recent research projects include:
- Adaption, implementation and evaluation of ‘Talking Mats' for Supported Home Care Planning’ for people with dementia (Dementia Centre for Research Collaboration - Implementing Research Evidence into Practice Grant, 2021-22)
- Co-desiGning demeNtia dIagnoSis ANd post-diagnostic CarE (COGNISCANCE) – NHMRC-ARC Boosting Dementia Research Grants/JPND (2019-21)
- Exploring the impact of Consumer Directed Care on people with dementia who are recipients of Home Care Packages (NHMRC-ARC Dementia Development Fellowship) (2016-2019)
- Connections for Life with dementia (Global Challenges Keystone, UOW) (2019-2021)
- Safe and Just Futures for People living with Dementia in Residential Aged Care (Dementia Research Foundation) (2019)

Geographic Focus

Australia Country
Canada Country
Illawarra Shoalhaven region Geographic Region
Netherlands Country
Poland Country
UK Country

Selected Publications

Journal Article

Year	Title
2021	Re-imagining care transitions for people with dementia and complex support needs in residential aged care: Using co-designed sensory objects and a focused ethnography to recognise micro transitions Published In Ageing and Society
2021	The decision-making processes and preferences of older Australians purchasing home support services: An explorative inquiry using a ¿think-aloud¿ technique Published In Australian Journal of Social Issues
2020	Connections for life with dementia Published In Australian Journal of Dementia Care
2020	Ending confinement and segregation: barriers to realising human rights in the everyday lives of people living with dementia in residential aged care Published In Australian Journal of Human Rights
2020	Human rights and the confinement of people living with dementia in care homes Published In Health and Human Rights Journal
2020	Patterns of hospital utilisation in the lead up to a diagnosis of dementia: A longitudinal retrospective study of hospital dementia patients in Australia Published In Australasian Journal on Ageing
2020	Rethinking respite in Australia: a naturalistic effect study of a multicomponent community program to promote respite knowledge, attitudes and behaviours of carers of people with dementia Published In Health and Social Care in the Community
2020	Thinking through participatory action research with people with late-stage dementia: research note on mistakes, creative methods and partnerships Published In International Journal of Social Research Methodology
2020	Under-coding of dementia and other conditions indicates scope for improved patient management: A longitudinal retrospective study of dementia patients in Australia Published In Health Information Management Journal
2019	A Cohesive Research Approach to Assess Care-Related Quality of Life: Lessons Learned From Adapting an Easy Read Survey With Older Service Users With Cognitive Impairment Published In International Journal of Qualitative Methods
2019	As home care packages become big business, older people are not getting the personalised support they need Published In The Conversation
2019	Consumer-directed care for older Australians: Are resources identified on the Web adequate to support decisions about home-based care packages? Published In Australian Journal of Social Issues
2019	Creating a dementia enabling university using a Knowledge Translation approach: Innovative practice Published In Dementia: the international journal of social research and practice
2019	Factors contributing to low readiness and capacity of culturally diverse participants to use the Australian national bowel screening kit Published In Public Health Research and Practice
2019	Involvement of people with dementia in raising awareness and changing attitudes in a dementia friendly community pilot project Published In Dementia: the international journal of social research and practice
2019	Knowledge, help-seeking and efficacy to find respite services: an exploratory study in help-seeking carers of people with dementia in the context of aged care reforms Published In BMC Geriatrics
2019	Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care Homes Published In Laws
2019	Re-design of Aged Care Environments is Key to Improved Care Quality and Cost Effective Reform of Aged and Health System Care Published In Applied Health Economics and Health Policy
2019	The consumer perspective: exploring how workforce participation was maintained when symptoms of a dementia occurred and factors that enabled a positive work to retirement transition Published In Australian Occupational Therapy Journal
2019	What is the impact of dementia on occupational competence, occupational participation and occupational identity for people who experience onset of symptoms while in paid employment? A scoping review Published In Australian Occupational Therapy Journal
2018	More than talking: A scoping review of innovative approaches to qualitative research involving people with dementia. Published In International Journal of Qualitative Methods
2018	Staff and family attitudes to fences as a means of detaining people with dementia in residential aged care settings: The tension between physical and emotional safety Published In Australian Journal of Social Issues
2017	A feasibility study of team-based primary care for chronic disease management training in rural Australia Published In Australian Journal of Rural Health
2017	Are Big Food’s corporate social responsibility strategies valuable to communities? A qualitative study with parents and children Published In Public Health Nutrition
2017	Cancer beliefs in ethnic minority populations: a review and meta-synthesis of qualitative studies Published In European Journal of Cancer Care
2017	Employee perspectives: Exploring the journey from paid work to retirement due onset of a dementia Published In Australian Occupational Therapy Journal
2017	The development and testing of the dementia friendly communities environment assessment tool (DFC EAT) Published In International Psychogeriatrics
2016	'Rethinking Respite¿ for carers of people with dementia Published In Australian Journal of Dementia Care
2016	Applying knowledge translation concepts and strategies in dementia care education for health professionals: recommendations from a narrative literature review Published In Journal of Continuing Education in the Health Professions
2016	Empowering patients in the hospital as a new approach to reducing the burden of health care-associated infections: the attitudes of hospital health care workers Published In American Journal of Infection Control
2016	Erratum: Dementia attitudes and help-seeking intentions: an investigation of responses to two scenarios of an experience of the early signs of dementia. (Aging & Mental Health, 19(11), (968-977)) Published In Aging and Mental Health
2016	Reflections and recommendations for conducting in-depth interviews with people With dementia Published In Qualitative Health Research
2015	A review of current practices to increase Chlamydia screening in the community - a consumer-centred social marketing perspective Published In Health Expectations
2015	Ask, speak up, and be proactive: empowering patient infection control to prevent health care-acquired infections Published In American Journal of Infection Control
2015	Dementia attitudes and help-seeking intentions: an investigation of responses to two scenarios of an experience of the early signs of dementia Published In Aging and Mental Health
2015	Knowledge of, beliefs about, and perceived barriers to organ and tissue donation in Serbian, Macedonian, and Greek Orthodox communities in Australia Published In Progress in Transplantation: the journal for procurement and clinical transplant professionals
2015	The brave new world of older patients: preparing general practice training for an ageing population Published In Primary Health Care Research and Development
2015	‘I don’t want to cause any trouble’: the attitudes of hospital patients towards patient empowerment strategies to reduce healthcare-acquired infections Published In Journal of Infection Prevention
2014	A review of the factors associated with the non-use of respite services by cares of people with dementia. implications for policy and practice. Published In Health and Social Care in the Community
2014	Correlates of dementia attitudes in a sample of middle-aged Australian adults Published In Australasian Journal on Ageing
2014	Cultural beliefs about cancer influencing help-seeking and symptom appraisal: a meta-synthesis of qualitative findings Published In Asia Pacific Journal of Clinical Oncology
2014	Development of an evidence-based framework to support knowledge translation within the Australian Dementia Training and Study Program Published In Australian Journal of Dementia Care
2014	Promoting awareness, knowledge of and compliance with the National Children's Physical Activity Guidelines Published In Journal of Science and Medicine in Sport
2013	Addressing stigma and engaging orthodox religious communities around organ and tissue donation Published In Transplantation
2013	Using social marketing to promote cold and flu prevention behaviors on an Australian university campus Published In Cases in Public Health Communication and Marketing
2013	Why carers of people with dementia do not utilise out-of-home respite services Published In Health and Social Care in the Community
2012	Use of Day Centers for Respite by Help-Seeking Caregivers of Individuals with Dementia Published In Journal of Gerontological Nursing
2012	Use of day centers for respite by help-seeking caregivers of individuals with dementia Published In Journal of Gerontological Nursing
2011	"Between the devil and the deep blue sea": the beliefs of caregivers of people with dementia regarding the use of in-home respite services Published In Home Health Care Services Quarterly
2011	Erratum: Patients' attitudes to general practice registrars: A review of the literature (Education for Primary Care (2009) 20:5 (371-378)) Published In Education for Primary Care
2011	Residential respite care: The caregiver's last resort Published In Journal of Gerontological Social Work
2010	'Most men drink... especially like when they play sports' - alcohol advertising during sporting broadcasts and the potential impact on child audiences Published In Journal of Public Affairs
2010	General practice registrars: attitudes of older patients Published In Australian Family Physician
2009	Effective communication only part of the strategy needed to promote help-seeking of young people with mental health problems Published In Social Marketing Quarterly
2009	Factors influencing the non-use of respite services by caregivers of people living with dementia differ according to respite product Published In Alzheimer's and Dementia
2009	Older patients' attitudes to general practice registrars: a qualitative study Published In Australian Family Physician
2009	Patients' attitudes to general practice registrars: a review of the literature Published In Education for Primary Care
2006	O3¿08¿01: `RETHINK RESPITE¿: AN INNOVATIVE COMMUNITY PILOT INTERVENTION FOR CARERS OF PEOPLE WITH DEMENTIA TO IMPROVE KNOWLEDGE ABOUT, ATTITUDES TOWARD, AND USE OF RESPITE SERVICES AND STRATEGIES Published In Alzheimer's & Dementia

Chapter

Year	Title
2015	Evidence-based practice Published In Care of the Person with Dementia: Interprofessional Practice and Education Publisher Port Melbourne, Australia
2013	Cold and flu affect more than you: A social marketing campaign targeting influenza transmission on a university campus Published In Social Marketing: From Tunes to Symphonies Publisher Abingdon, United Kingdom

Conference Paper

Year	Title
2020	Improving dementia diagnosis and post diagnostic support: The COGNISANCE Project Published In Australian Dementia Forum Abstracts
2020	Multi-sensory methodologies: Participatory action research with people with late stage dementia Published In Australian Dementia Forum Abstracts
2020	Multi-sensory methodologies: participatory action research with people with late stage dementia Published In British Society of Gerontology 49th Annual Conference
2020	Preliminary development of an audit tool for the homes of community dwelling people with dementia Published In Australian Dementia Forum Abstracts
2020	Removing barriers to ethics approval: innovation by a researcher and a person living with dementia Published In Australian Dementia Forum Abstracts
2020	Supporting micro-transitions: What kinds of transitions are significant for people with late stage dementia? Published In British Society of Gerontology 49th Annual Conference
2020	Transitions and time travel: Transition types and transitional support for people with late stage dementia? Published In Australian Dementia Forum Abstracts
2019	Consumer perspectives: How younger onset dementia impacts workforce participation during onset and progression of symptoms Published In Australian Dementia Forum
2019	Under-coding of dementia over time suggests lack of active management Published In 52nd AAG Conference
2018	Action research to support dementia friendly communities: the Kiama experience Published In 51st Australian Association of Gerontology (AAG) Conference
2018	Hospitalisation patterns for older Australians in the five years prior to an index admission for dementia Published In Australian Dementia Forum
2018	Re-thinking respite with carers of people with dementia Published In 51st Australian Association of Gerontology (AAG) Conference
2018	Testing an Easy Read Version of the Adult Social Care Outcomes Toolkit to assess quality of life in community dwelling older people with cognitive impairment Published In 47th Annual Conference of the British Society of Gerontology
2018	The impact of symptoms of dementia on task competency in the workplace: Experiences of workers with dementia Published In Human Factors and Ergonomics Society of Australia 2018 Conference
2018	The quality of life of HCP recipients with cognitive impairment. Published In 51st Australian Association of Gerontology (AAG) Conference
2018	‘Rethink Respite’: an innovative community pilot project for carers of people with dementia to improve knowledge about, attitudes towards, and use of respite Published In 33rd International Conference of Alzheimer's Disease International
2017	Older consumers, choice and decision-making in community aged care Published In Emerging Health Policy Researchers Conference
2017	What happened to carer respite? Implications of community care reforms in Australia Published In 7th International Carers Conference
2016	Consumer Directed Care: Understanding and promoting participation and care outcomes for people living with dementia in receipt of a Home Care Package. Published In Australian Dementia Forum
2016	Re-imagining Respite In Aged Care and Carer Reforms Published In Re-Imagining Our Future : 49th AAG Conference 2016
2015	Building blocks for dementia friendly communities: mapping dementia friendly places and spaces in Kiama Published In 30th International Conference of Alzheimer’s Disease International: Abstract Book
2015	Evaluating the characteristics of public and commercial buildings that are enabling and disabling for people with dementia Published In 30th International Conference of Alzheimer’s Disease International: Abstract Book
2015	Flexible respite for carers of people with dementia Published In 30th International Conference of Alzheimer’s Disease International: Abstract Book
2015	Integrated literature review - workforce participation and making decisions to stay or retire Published In 30th International Conference of Alzheimer’s Disease International: Abstract Book
2015	The incorporation of Transformative Consumer Research principles within the ‘Cancer Good News’ social marketing project: A Case Study Published In World Social Marketing Conference Sydney 2015
2015	The utility of Action Research to support the development of Dementia Friendly Communities Published In 30th International Conference of Alzheimer’s Disease International: Abstract Book
2014	Improving awareness, attitudes and uptake of the Australian physical a ctivity g uidelines among primary school students, their teachers and parents Published In International Social Marketing Conference 2014 Proceedings
2014	The brave new world of older patients: preparing general practice training for an ageing population Published In 2014 General Practice Education and Training Convention: Academic paper abstracts
2014	The cancer good news project Published In International Social Marketing Conference 2014 Proceedings
2013	Knowledge translation in environmental design of residential aged care facilities for people with dementia Published In 8th National Dementia Research Forum
2013	Project Good News - Engaging priority CALD communities to reduce the stigma associated with cancer Published In Second Annual Innovations in Cancer Services & Care Conference
2013	Taking a consumer driven approach to support residential respite service use by caregivers of people with dementia Published In Alzheimer's Australia 15th National Conference
2012	Engaging psychology students in clinical placements in dementia care Published In ANZMAC 2012: Australian and New Zealand Marketing Academy Conference
2012	Preventing the spread of colds and flu: a University based social marketing campaign Published In 2012 International social marketing conference (ISM): conference proceedings
2012	Using Social Marketing to Reduce Cold and Flu Transmission On a University Campus Published In National Conference on Health Communication, Marketing, and Media
2012	Using health risk assessments to target and tailor: An innovative social marketing program in aged care facilities. Published In 2012 International social marketing conference (ISM): conference proceedings
2011	Dementia, stigma and intentions to help-seek: a pilot sutdy of Australian adults 40 to 65 years Published In Alzheimer's Australia 14th National Conference
2011	Developing Messages to Create Community Awareness of Hypertension as a Risk Factor for Dementia Published In Proceedings of the Australian and New Zealand Marketing Academy Conference
2011	Implementation and evaluation of a community-based social marketing campaign to create awareness of hypertension as a risk factor for dementia Published In Australian and New Zealand Marketing Academy Conference
2011	Why caregivers of people with dementia don't utilise out-of-home respite services Published In Alzheimer's Asutralia 14th National Conference
2010	Preparing for an ageing population: a survey of older patients' attitudes to general practice registrars Published In 2010 General Practice Education and Training Convention: Clinical and Cultural Competence: Everybody's Business
2009	Alcohol advertising during free to air television sporting Published In Sustainable Social Enterprise - International Nonprofit and Social Marketing Conference

2009	The Conference for General Practice 2009 Published In Older patients’ attitudes to general practice registrars: a qualitative study
2008	Developing Effective Communication Strategies to Promote the Help-Seeking of Young People With Mental Health Problems in the Illawarra Published In International Non-profit and Social Marketing Conference
2008	Evaluating the impact of the narrow cast marketing of 'Snake Condoms' to indigenous youth Published In Australia and New Zealand Marketing Academy Conference
2008	I eat Milo to make me run faster: how the use of sport in food marketing may influence the food beliefs of young Australians Published In Australia and New Zealand Marketing Academy Conference
2007	Awareness of alcohol advertising among children who watch televised sports Published In Australia and New Zealand Marketing Academy Conference
2007	Branding: An adolescent sun protection perspective Published In Australia and New Zealand Marketing Academy Conference

Other Publications

Year	Title
2017	Dementia Enabling University Strategy (DEUS) – A pilot project at University of Wollongong: Final report
2017	Geographic gerontology and Dementia Friendly Environments: Illuminating perspectives of people with dementia and their carers. Final Report to Alzheimer’s Australia Dementia Research Foundation
2017	MCCI CALD Carer Support Project: Social Marketing Plan
2017	Multicultural Carers Support Project – Formative Research Report: Attitudes and beliefs about carer support services in Turkish and Vietnamese communities in the Illawarra
2017	Multicultural Carers Support Project – Literature Review: Use of support services by carers of older people from CALD backgrounds: a review of abilities which support accessibility of support services in Australia.
2017	Rethink Respite: Final Report.
2017	Specialist dementia care units: an Evidence Check rapid review
2015	The effect of targeted social information resources on older patient attitudes towards GP registrars
2014	A Systematic review to update the Australian sedentary behaviour guidelines for children and young people
2012	A systematic review to update the Australian physical activity guidelines for children and young people
2012	Effectiveness of ‘signs and symptoms’ campaigns for lun g cancer: a rapid review
2012	Improving cancer outcomes among culturally and linguistically diverse communities: a rapid review of the literature
2012	The GP Dementia Risk Reduction Education Project: Literature Review and Formative Research with General Practitioners
2011	Healthy Heart Healthy Mind Dementia Risk Reduction Awareness Campaign: Final Report and Evaluation
2007	Exploring the issues associated with caring for people living with HIV/AIDS and the implications for health care worker safety
2007	Final Project Report "Range and adequacy of skills attained by participants in general practice training programs"
2007	Food Marketing to Children in Australia for the Cancer Council Australia's Nutrition and Physical Activity Committee

Investigator On

Year	Title
2021 - 2024	Food for thought: Preventing decline and improving cognition through diet and dietary advice in older people at risk Awarded by: Dementia Centre for Research Collaboration Funding Scheme: World Class Research Project Grant
2021 - 2023	Modelling the role of non-admitted care and its relationship to hospitalisation to guide system improvement for people living with dementia Awarded by: Dementia Centre for Research Collaboration Funding Scheme: Pilot Grant
2021 - 2022	Adaption, implementation and evaluation of the ¿Talking MatsTM for Supported Home Care Planning¿ intervention for people with dementia Awarded by: Dementia Centre for Research Collaboration Funding Scheme: Implementing Research Evidence into Practice Grants
2019 - 2021	Co-desiGning demeNtia dIagnoSis ANd post-diagnostic CarE Awarded by: National Health and Medical Research Council (NHMRC) Funding Scheme: Boosting Dementia Research Grants
2016 - 2020	Consumer Directed Care: Understanding and promoting participation and care outcomes for people living with dementia in receipt of a Home Care Package Awarded by: National Health and Medical Research Council (NHMRC) Funding Scheme: Dementia Research Development Fellowship
2016 - 2017	Investigating the efficacy of an online intervention aiming to increase respite use amongst carers of people with dementia: Roles of motivational enhancement and professional delivery Awarded by: Alzheimer's Australia Research (AAR) Funding Scheme: Dementia Grants Program
2015 - 2017	Improving older persons' involvement in decisions concerning their health care Awarded by: IRT Research Foundation Funding Scheme: Grant
2015 - 2016	Making flexible respite care a practical reality Awarded by: Department of Social Services Funding Scheme: Aged Care Service Improvement and Healthy Ageing Grants (ACSIHAG)
2015 - 2016	RAID: The development and trial of an innovative community-based Respite Action Intervention for carers of people with Dementia Awarded by: Alzheimer's Australia Research (AAR) Funding Scheme: Dementia Grants Program
2015	Geographic Gerontology and Dementia-friendly Environments: Illuminating the perspective of people with dementia and their carers in a local community Awarded by: Alzheimer's Australia Research (AAR) Funding Scheme: Dementia Grants Program
2012	Evaluating the impact of the introduction of a systematic approach to designing environments for people with dementia: an action research project. Awarded by: IRT Research Foundation Funding Scheme: IRT Research Fundation Grants
2012	Reducing stigma and enabling help seeking for cancer in priority CALD communities in the Illawarra-Shoalhaven Local Health District Awarded by: Cancer Institute NSW Funding Scheme: CSI Cross Divisional Grants Program
2011	Organ and Tissue Donation - Engaging Orthodox Communities Awarded by: Australian Government Organ and Tissue Authority Funding Scheme: Community Awareness Grants Program
2010 - 2011	Promoting healthy lifestyles in IRT self care communities Awarded by: IRT Research Foundation Funding Scheme: Grant
	Community led lntergenerational Playgroups: developing a best practice model and toolkit for residential care settings Awarded by: Department of Health and Ageing (DoHA) Funding Scheme: Liveable Communities Grant

Other Research Activities

Safe and Just Futures - Dementia Research Foundation Associate Investigator 2018 - 2019
Safe and Just Futures - Dementia Research Foundation Associate Investigator 2018 - 2019

Impact Story

RESEARCH AND ACTION TO PIONEER DEMENTIA FRIENDLY COMMUNITIES: The ‘Dementia Friendly Kiama’ Story
Summary
Alongside the demographic aging of the population, there is a corresponding increase in the number of people living with dementia. International estimates are 46 million, with this number expected to rise to 138 million by 2050 (ADI, 2016). The increasing prevalence of dementia will demand a shift in both the social and the physical environments within which we live. Low levels of public understanding can contribute to the fear, stigma and social exclusion associated with living with dementia. Public spaces and civic buildings are not often designed in ways which are supportive of people with dementia participating in civic life. ‘Dementia friendly’ communities aim to address this by empowering people with dementia and increasing their social inclusion. They also aim to create more supportive physical environment to enable participation.The ‘Dementia Friendly Kiama’ project (led by Dr Lyn Phillipson) and colleagues from UOW (Brennan-Horley, Fleming, Cridland, Hall and Hasan) is a partnership between the University of Wollongong (UOW) Global Challenges Program, the Kiama Municipal Council, the Kiama community and Dementia Australia. The project utilises a Community-based Participatory Action Research framework to inform the development, implementation and evaluation of a multicomponent dementia-friendly community intervention. Research in Kiama has included interviews and mapping exercises with people with dementia and their carers, community and business surveys, piloting a Dementia-friendly business toolkit and the development of an environmental assessment tool for use in the auditing of public buildings. Formative research activities guided the Action Plan of a local Dementia Alliance and Dementia Advisory Group. Evaluative research activities monitor inputs, outputs, impacts and outcomes of the project. Key achievements include:1.) The empowerment of people living with dementia – including opportunities for civic participation, social inclusion and peer support through the Southern Dementia Advisory Group and other project activities2.) Improved community understanding and increased positive attitudes with regard to the capabilities of people living with dementia. This has been achieved via education sessions (with over 1000 attendances) and the development of new information resources e.g. the ‘Dementia Illawarra’ website (<a href="www.dementiaIS.com" target="_blank" rel="noopener">www.dementiaIS.com</a>).3.) Tools to improve the physical environment –including the Dementia Friendly Communities Environmental Assessment Tool (DFC-EAT) and the establishment of the ‘OurPlace’ Kiama mapping tool (http://ourplacemap.com/)4.) Public recognition and acclaim - the project received an Excellence in Community Partnerships Award at the National Disability Awards (2016) and was recognised at the 7th Global Conference for the Alliance of Healthy Cities (2016) by the World Health Organisation.5.) The model and tools have informed Dementia Australia’s $3.9 million ‘National Dementia Friendly Communities Strategy’ (funded by the Department of Health, 2017-2021.6.) The project has also had an impact at UOW. Programs such as the ‘Dementia Enabling University Strategy’ has increased opportunities for students from all five faculties to study the impact of dementia and consider their role in the creation of a dementia friendly society. The Global Challenges project has also continued to support new interdisciplinary projects that address the societal challenges of dementia. 

Detail View

Detail View Summary View
Detail of Impact
Responding to an identified needKiama is an example of what is known in Australia as a ‘sea-change’ town. It is popular with retirees as a place to live out their senior years due to its attractive coastal location, village atmosphere and relative access to cities (Wollongong and Sydney) via a railway corridor. The larger Kiama State Electorate has a population of 69,000 people. Due to the ageing demographic profile of the region, the number of people living with dementia in the State Electorate is projected to increase from the current 1200 to almost 4000 by 2050. Kiama Council was already working towards becoming an aged-friendly city and had a strong history of community engagement. However, it had identified that it had experienced barriers to understanding the specific needs of residents with dementia and how it could better support their active aging. Participatory Processes and GovernanceThe ‘Dementia Friendly Kiama’ utilised a Community-based Participatory Action Research framework to inform the development, implementation and evaluation of a multicomponent dementia-friendly community intervention. Kiama Council was already working towards becoming an aged-friendly city and had a strong history of community engagement. This provided a strong foundation around which to engage community members and groups to support the aims of the project. In the early stages of the project, a Dementia Advisory Group (consisting of people living with dementia and their carer partners) and a Dementia Alliance (including members of the Advisory Group, representatives from partner and other relevant organisations, and interested individuals) were formed. These groups played a governance role and also supported the development, implementation and evaluation of all stages of the project. Action ResearchThe university had specific expertise with regards to social research with people with dementia (Phillipson), design and dementia (Fleming), human geography (Brennan-Horley), social marketing (Phillipson and Hall), psychology (Cridland) and information management (Hasan). The university undertook formative research with people living with dementia in the Kiama area and their carer partners, as well as members of the Kiama community.Research activities included interviews and mapping exercises with people with dementia and their carers, community and business surveys, piloting a Dementia-friendly business toolkit and the development of an environmental assessment tool for auditing of public buildings. Co-design and Collaborative ImplementationThe Dementia Advisory Group and the Dementia Alliance reviewed the formative research and developed an action plan. The University researchers were part of the broader Alliance who conducted this review and developed the aims for the action plan. Aims included increasing community awareness about dementia and local services, promoting understanding of the lived experience of dementia and reducing the stigma of dementia. It also included goals to improve the physical environment with regards to signage, way finding, pedestrian crossings and bus stop identification. Importantly the University participated as an ongoing member of the Dementia Alliance. Awareness raising and educational activities were co-designed and co-facilitated by members of the Dementia Advisory Group. This was based on their desire for local people to understand their lives and share their awareness - which has also been found in other research. The decision to support the active involvement of local people with dementia in media and educational events was also based on a previous study of dementia stigma in Australia which found that having contact with a person with dementia was associated with lower levels of personal avoidance of the condition. Education and awareness raising activities over an 18-month period included information and education sessions delivered to over 1000 community members. People living with dementia and their carers participated in all activities sharing their experiences in the media and via presentations and panel discussions at educational events. They were also involved in direct consultation with community organisations, businesses and services including the Chamber of Commerce, service clubs and general practitioners. The project attracted over 30 instances of media attention including radio, TV and print at local, Sydney and national level in which local people living with dementia frequently featured. Four websites featured information about the project, including the project website (www.dementiais.com), which promoted local information, resources and services for people with dementia, a local calendar of events and over 35 news blogs specific to the project. A Dementia Friendly Kiama brand was developed and printed material (including flyers, posters, brochures and newsletters) were widely distributed. Tools and processes for inclusive action Research and collaboration methods required adaptation to promote the inclusion of people with dementia. This had an impact on where and when activities occurred, the environment in which they occurred and the amount of information presented and the time people were given to prepare in advance.Activities in the physical environment included the initial development of the Dementia Friendly Communities Environmental Assessment Tool (DFC-EAT). The DFC-EAT was utilised by the Kiama Community College and the Kiama Library to inform environmental changes to improve accessibility in these public buildings for people with dementia. The ‘OurPlace’ Kiama web interface was also established (<a href="http://ourplacemap.com/" target="_blank" rel="noopener">http://ourplacemap.com/</a>). The online maps are used to crowd source and share information about dementia-friendly places and ideas for action. These were reviewed at Dementia Alliance meetings. The development of these tools appears a critical feature of the growing and broader impact of this project. Subsequent validation of DFC-EAT has received national and international recognition and is available for use via www.enablingenvironments.com.au and via mobile applications. ‘Our Place’ maps have also supported the development of another four dementia friendly communities across Australia since their introduction in 2015.
Field of Research
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Beneficiary Quantification Description
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UOW Centres / Programs
UOW Researchers / Collaborators

Advisees

Graduate Advising Relationship

Degree	Research Title	Advisee
Doctor of Philosophy	Engaging Culturally and Linguistically Diverse (CALD) communities in school-based vaccination for Human papillomavirus (HPV)	Prokopovich, Kathleen
Doctor of Philosophy	Exploring Employee Experiences of retirement due to signs and symptoms of pementia	Andrew, Catherine
Doctor of Philosophy	What is the impact of the marketisation of the commonwealth home care packages on the lived relational experience of informal carers?	Duncan, Catherine
Doctor of Philosophy	Examining the impact of dementia on patterns of hospitalisation: A longitudinal analysis of hospital admissions in the Illawarra and Shoalhaven	Cappetta, Kara
Doctor of Philosophy (Integrated)	Investigating the value of developmental social work in social work education and the impact on diverse communities	Ray, Nandini
Doctor of Philosophy	Co-designing and Testing a Talking Mats Intervention to Enhanced Shared Decision Making in Home Care with People wtih Dementia	Blacklaw, Emma
Doctor of Philosophy	Making the Design of Home Environments More Dementia Friendly to Promote the Quality of Life of People with Dementia and their Care Partners	Concannon, Sharon
Doctor of Philosophy	Understanding and addressing the needs of people from LGBTQI+ communities in relation to aged care	Hind, Alicia
Doctor of Philosophy	¿Community Crafting¿: Exploring The Impact Of A Co-Designed Program With A Network Innovation Manager On The Well-Being Of People With Dementia And Staff In A Residential Aged Care Facility.	Rushton, Lee

Keywords

Dementia, ageing, vulnerability, qualitative methods, participatory methods, place, environment, public health

Orcid Id

http://orcid.org/0000-0003-2173-0291 (confirmed)

Scopus Id

35254541100

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Impact Story

RESEARCH AND ACTION TO PIONEER DEMENTIA FRIENDLY COMMUNITIES: The ‘Dementia Friendly Kiama’ Story

Supervision

Advisees

Graduate Advising Relationship

Background

Keywords

Identity

Orcid Id

Scopus Id

Overview

Top Publications

Research Areas

Research Overview

Geographic Focus

Publications

Selected Publications

Journal Article

Chapter

Conference Paper

Other Publications

Funding

Investigator On

Other Research Activities

Impact

Impact Story

RESEARCH AND ACTION TO PIONEER DEMENTIA FRIENDLY COMMUNITIES: The ‘Dementia Friendly Kiama’ Story

Supervision

Advisees

Graduate Advising Relationship

Background

Keywords

Identity

Orcid Id

Scopus Id

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Research Areas

Geographic Focus