Diversity in Dementia Care

Area of Research:
Dementia-related care in the community and under a public health crisis

Current Projects

EVIDENCE TO ASSESS THE IMPACT OF COVID-19 ON COMMUNITY-BASED DEMENTIA CARE IN NOVA SCOTIA

Summary:

This project addresses the pressing need for information that can be used to assess the impact and health equity implications of COVID-19 on community supports for vulnerable older adults living with multiple chronic conditions, including dementia, and their family friend caregivers in Nova Scotia. Within the current context of social distancing and social isolation, evidence about the resources, services and supports that make it possible for dementia care to continue at home in the community is lacking. This integrated Knowledge Translation (iKT) project will contribute to, clarify and enhance the best evidence-in-the-moment about dementia-relevant supports and program service delivery by using qualitative social scientific methods to collect and synthesize data on dementia-relevant formal health system and local grassroots resources, services and supports. The new knowledge generated from the work will develop a baseline that can be used to assess the impact of COVID-19 on service delivery both during and post-pandemic, and support efforts to transition from emergency measures and adjust to the post-COVID-19 ‘new normal’. Drawing on interviews with diverse populations of people living with dementia and theirfamily/friend caregivers, we will create a snapshot of service realities for socially and medically vulnerable populations. The documentation of service realities will provide a crucial resource for current and future efforts to track, analyze, interpret and address issues of health (in)equity for older adults living with dementia and their caregivers in the province. Project results and outputs will highlight gaps in existing service provision, and prioritize areas for action in accordance with resource availability within a dynamic and changing context. It is critical that this information be captured and collated now, while it is still accessible (particularly where local grassroots supports are included, which may lack formal documentation or public archiving). This research has been approved by St.F.X. University, Mount Saint Vincent University, and Dalhousie University Research Ethics Review Boards.

For more information on what dementia is: https://alzheimer.ca/en/about-dementia/what-dementia 

Anticipated Outcomes: 

Identify leading evidence and provincial resources, services and supports for people living with dementia and their caregivers can actually access in NS under the emergency constraints of COVID-19. This information is crucial in supporting vulnerable Nova Scotians in sheltering in place and avoiding emergency hospitalizations and institutionalization during a time when the capacity of hospitals and long-term care facilities is already under threat. The project will highlight the centrality of the continuing care sector within the COVID-19 Response, with a focus on the challenges for, and contributions of, family/friend caregivers and community resource, service and support providers. This rapid research project will also support recognition of the structural determinants and health inequities that shape whether and how caregivers access and experience supports needed to provide care at home during the pandemic.

 

LINKS TO VOLUNTARY, CONFIDENTIAL ONLINE SURVEYS (ACTIVE TO FEBRUARY 2021)

Do you live or work in Nova Scotia? Do you live with dementia or support dementia care as a family/friend, paid care provider or community group? We want to hear from you! We want to understand how COVID-19 has affected dementia services and supports for people living with dementia and supporting care in community. You are invited to complete a voluntary, confidential survey below. What you tell us in the survey will help us understand how COVID-19 has affected services and supports you get or know of.

Click the link that most applies to you to take the survey:

Link for people living with dementia or providing care to a friend or family member with dementia in Nova Scotia: https://stfx.qualtrics.com/jfe/form/SV_5dSRc4x02aGcFZb

Link for providers of community-based dementia-related health, social or community services and supports in Nova Scotia: https://stfx.qualtrics.com/jfe/form/SV_9AhliQ3e8xRgXXf

 

INTERVIEWS WITH PEOPLE LIVING WITH DEMENTIA, FAMILY/FRIEND CAREGIVERS, SERVICE & SUPPORT PROVIDERS (ACTIVE TO FEBRUARY 2021)

We are also hoping to speak with people about their experiences receiving, supporting and providing care. A $25 honorarium will be offered to people living with dementia and caregivers who participate in interviews. What we learn from this research will be used to make care better for individuals living with dementia.

 

 

Publications

  • Bradbury, K., Moody, E., Aubrecht, K., & Sim, M. (November 7, 2020). Dementia care under COVID-19 and infectious disease pandemic restrictions. GSA 2020 Annual Scientific Meeting Online: Turning 75: Why Age Matters. Online. 
  • Aubrecht, K., Burke, R., Gahagan, J., Dowling, L., Kelly, C., Hande, M.J., Hardie, S., Keefe, J., & Rock, B. (November 5, 2020). Health equity impacts of COVID-19 policies on dementia-relevant community services: A SGBA+ policy scan. GSA 2020 Annual Scientific Meeting Online: Turning 75: Why Age Matters. Online.    

 

Project Partners

Victorian Order of Nurses (VON)Alzheimer Society Nova ScotiaAlzheimer Society IrelandEviance: Canadian Centre on Disability Studies Inc.NS Health Continuing Care

 

 

Project Funder

Nova Scotia COVID-19 Health Research Coalition

 

 

 

 

 

Students and Trainees

  • Anna O’Brien 

Primary Supervisor: Dr. Katie Aubrecht 
Program, Institution: BASc Health, St. Francis Xavier University  
Research interests: Importance of relationships and human interaction for people with dementia 

 

  • Mary Lukindo 

Primary Supervisor: Dr. Barbara Hamilton-Hinch
Program, Institution: BSc Medical Sciences, Dalhousie University
Research Interests: Ethical and social impacts of the COVID-19 pandemic and resulting policies/measures on Dementia care in the black & immigrant communities
 

  • Shirley Hodder

Primary Supervisor: Dr. OmiSoore Dryden
Program, Institution: BSc Health Promotion, Dalhousie University
Research Interests: Systematic racism within Nova Scotia, the Deaf and hard of hearing community in NS, and research on African Nova Scotian children within N.S. public school systems                                                                                                                                         

  • Kelly Bradbury 

Primary Supervisor: Dr. Elaine Moody 
Program, Institution: Nursing (accelerated stream), Dalhousie University  
Research Interests: Scoping review methodology, community care, aging, dementia 

                                                                                                                                                        

  • Rosanne Burke

Primary Supervisor: Dr. Katie Aubrecht 
Program, Institution: MA, Family Studies & Gerontology, Mount Saint Vincent University            Research Interests: Dementia caregiving, policy, health equity

 

RESEARCH TEAM

Collaborator Profiles

Dr. OmiSoore Dryden

Dr. OmiSoore H. Dryden is the James R Johnston Chair in Black Canadian Studies, Faculty of Medicine, and Associate Professor, Community Health & Epidemiology at Dalhousie University. Dr. Dryden is an associate scientist with the Maritime SPOR SUPPORT Unite (MSSU) and a current member of the international Black Feminist Health Science Studies Collective based at Northeastern University. An interdisciplinary scholar who examines the “social life” of blood donation, while engaging with Black queer diasporic analytics, Dryden is the Principal Investigator of #GotBlood2Give / #DuSangÀDonner a research project which seeks to identify the barriers African/Black gay, bisexual, and trans men encounter with donating blood and also analyzes how anti-black racism, colonialism, and sexual exceptionalism shapes the blood system in Canada. Most recently, Dryden is the Principal Investigator on the project Don’t Count Us Out! – a community-informed, culturally sensitive approach to health promotion for African Nova Scotian communities with an initial focus on COVID-19 pandemic as well as a focus on the development of  an African Nova Scotian Community Population Health Registry (CPHR) as a move toward collecting disaggregated race-based health data in order to provide reliable population health information for people of African descent in Nova Scotia. 
 

James R. Johnston (JRJ ) Chair in Black Canadian Studies 

dal.ca/faculty/jrj-chair | @JRJChair | jrjadmin@dal.ca  

Associate Professor, Faculty of Medicine, Dalhousie University 

Dept, Community Health & Epidemiology | @OmiSooreDryden 

Co-President, Black Canadian Studies Association 

africancanadianstudies.com | @BlkCdnSA 

#GotBlood2Give #DuSangADonner 

gotblood2give.weebly.com | @IGotBlood2Give 

Phone: 902.494.6516 

Email: omisoore.dryden@dal.ca 

Centre for Clinical Research, Room 423 

5790 University Avenue, Halifax, NS B3H 1V7 

Dr. Barbara Hamilton-Hinch

Dr. Judah Goldstein

Judah Goldstein is the Research Coordinator for Emergency Health Services. Judah is a Primary Care Paramedic and has worked in the EHS ground ambulance system since 2000. He received his Interdisciplinary PhD from Dalhousie University in 2013.  Judah is an Assistant Professor with the Dalhousie University Department of Emergency Medicine, Division of Emergency Medical Services and holds an academic appointment with the Nova Scotia Health Authority, Department of Emergency Medicine. His areas of research are frailty assessment and management, geriatrics, and health services research.   
 
Judah can be reached at judah.goldstein@emci.ca 

Steven Estey

Until 2010 Steven was Human Rights Officer with Disabled Peoples’ International (DPI) a Canadian-based human rights NGO with members in 135 countries.  From 2003, until the successful conclusion of the negotiations in 2006, he was adviser to the Canadian Government Delegation which helped draft the Convention on the Rights of Persons with Disabilities (CRPD).   

Since leaving DPI Steve has focussed on teaching, writing and strategic implementation of CRPD in Canada and around the world.  Recently, in August of 2018, he stepped into the role of Interim National Coordinator with the Council of Canadians with Disabilities, a National Disability Rights Organization with which he has been affiliated with in various positions over the past 25 years.  Steve has a BA in Philosophy from St. Francis Xavier University and an MA in International Development Studies from St. Mary's University, both in Nova Scotia. 

Dr. Eliza Chandler

Earning her PhD in Social Justice and Education from the University of Toronto in 2014, Eliza Chandler leads a research program that centres disability arts. This research interest came into focus when, from 2014-16, she was the Artistic Director of Tangled Art + Disability, an organization in Toronto dedicated to showcasing disability arts and advancing accessible curatorial practice. Chandler is currently an Assistant Professor in the School of Disability Studies at Ryerson University where she teaches and researches in the areas of disability arts, critical access studies, social movements, and crip necropolitics. She participates in a number of research projects, including co-directing the SSHRC-funded partnership project, Bodies in Translation: Activist Art, Technology, and Access to Life. Chandler regularly give lectures on disability arts, accessible curatorial practices, and disability politics in Canada. She sits on the board of directors for the Ontario Arts Council and is a practicing curator. 

Dr. Janice Keefe

Janice Keefe, PhD is a Full Professor and Chair of the Department of Family Studies and Gerontology at Mount Saint Vincent University and holds appointments at Dalhousie University’s Faculties of Medicine and Graduate Studies and UNB’s School of Graduate Studies. In 2002, she was selected as Mount Saint Vincent’s first Canada Research Chair in Aging and Caregiving Policy which she held from 2002-2012. Dr. Keefe has received provincial, national and international recognition of her research, most recently receiving the Global Ageing Network 2017 Award for Excellence in Applied Research. In 2006, she was awarded the Lena Isabel Jodrey Chair in Gerontology and appointed Director of the Nova Scotia Centre on Aging. Dr. Keefe’s research areas are caregiving policy and practice, continuing care policy and projecting the needs of older Canadians in the future. In the past decade she has published over 60 articles and technical reports. She teaches courses in social policy and aging in the Master of Arts and Undergraduate Program in Family Studies and Gerontology and provides mentorship and supervision to a number of graduate students and post–doctoral fellows.

Dr. Kristin Hadfield

Dr. Kristin Hadfield is an Assistant Professor in the School of Psychology and the Trinity Centre for Global Health at Trinity College Dublin, the University of Dublin. Dr Hadfield's research focuses on how people’s resilience, wellbeing, and mental health can best be promoted. She is particularly interested in what makes children and adolescents thrive when faced with adverse or challenging contexts.

Dr. Jacqueline (Jacquie) Gahagan

Jacqueline (Jacquie) Gahagan, PhD (medical sociology), CE (credentialed evaluator) is a Full Professor of Health Promotion in the Faculty of Health at Dalhousie University and teaches program planning, measurement and evaluation. Jacquie serves as the Co-Director of the Atlantic Interdisciplinary Research Network for Social and Behavioural Aspects of HIV and HCV (airn.ca) and also holds Research Associate positions with the Jean Monnet European Union Centre of Excellence, the Health Law Institute, the Beatrice Hunter Cancer Research Institute, is a Founding Fellow of the MacEachen Institute for Public Policy and Governance and is an Affiliate Scientist with the Nova Scotia Health Authority.  

Jacquie’s program of mixed methods health promotion research focuses on evaluating policy and programming interventions using sex and gender-based analyses (SGBA+) to understand and address health inequities among marginalized populations including those living with or affected by HIV, HCV or other STBBIs, the scaling-up of access to innovative HIV testing technologies, older LGBTQ2I populations and housing, primary healthcare utilization among LGBTQ2I communities, and end-of-life decision-making. Prior to joining Dalhousie University, Jacquie worked as an evaluation specialist in public health at the municipal, provincial and national levels in relation to harm reduction, HIV/HCV prevention, and tobacco use cessation. 

Sacha Nadeau

Sacha Nadeau joins our team with a Masters in Family Studies & Gerontology and holds certifications in Scientist Knowledge Translation and patient-oriented research. Her previous research activities focused primarily on long-term care, including projects related to person-centered staffing, dementia-friendly design, reducing social vulnerability, access to primary care and diffusion of care innovations. In her role at the Alzheimer Society of Nova Scotia (ASNS), Sacha coordinates outreach to health care providers as part of their direct referral program and provides educational, supportive counselling to persons living with dementia and their care partners. Sacha also serves as the ASNS Research Liaison, responding to research-related inquiries, facilitating the competition for research awards, interpreting scientific findings, and promoting research as a strategic priority for the ASNS.

Dr. Elaine Moody

Elaine Moody is an Assistant Professor of Nursing whose scholarship is focused on better understanding the context of health and health care for older people, particularly those with complex health and social care needs such as older people with frailty, multimorbidity and dementia. Dr. Moody’s research aims to support older people living in the community and improve the experience of engaging with healthcare. Dr. Moody is a Registered Nurse with clinical experience caring for older people across health settings. 

Trudy Flynn

Trudy Flynn is a retired Nurse from Nova Scotia. She spent the last years of her career as a Geriatric Nurse working mostly with dementia / Alzheimer’s patients. Trudy’s mother was diagnosed with Alzheimer’s in 2008 and Trudy became her primary caregiver, eventually moving her mother into her home and later as her mother’s condition deteriorated into Long Term Care. 

Trudy has had Fibromyalgia for over 2 decades and her first experience with Patient Engagement was in 2014 as part of the steering committee for the CIHR (Canadian Institute of Health Research)- James Lind Alliance Adult Fibromyalgia Priority Setting Partnership. Trudy was a Patient Representative at the Canadian Pain Summit in Toronto in September, 2014, where she realized that Knowledge Translation and Patient Engagement were issues she was very interested in pursuing. 

In October 2014, Trudy became a Research Ambassador for CIHR’s Institute of Musculoskeletal Health and Arthritis (IMHA). In 2017, Trudy coauthored a paper published in the Canadian Journal of Pain, called “A paradigm change to inform Fibromyalgia research priorities by engaging patients and health care professions”. In 2018 Trudy wrote about her James Lind experience in an article titled “The James Lind Alliance: Identifying the Top 10 Canadian Research Priorities for Fibromyalgia - a Patients Perspective” for the CIHR website. 

In 2019 Trudy was a key contributor for the IMHA Online Resource Library: Fibromyalgia section to enable people with Fibromyalgia, Researchers and Clinicians to have a portal to important information on this condition. In 2019 Trudy joined the Maritime SPOR Support Unit (MSSU) to help promote and participate in Patient Engagement in the Maritime Provinces. 

Trudy’s main focus is on research involving dementia, Alzheimer’s, Long Term Care, Fibromyalgia, Chronic Pain and Patient Engagement. Trudy recently was chosen to be a Patient Engagement Research Ambassador (PERA) for the CIHR – IMHA. 

Dr. Susan Hardie

Susan Lynn Hardie is the Executive Director of the Canadian Centre on Disability Studies Inc. operating as Eviance. She has been working in the cross-disability field, inclusive of mental health, for thirty-five years in various capacities (i.e. advocate, community organizer, researcher, educator, policy analyst, service provider). Susan is known for having a “foot in two worlds” (academe, diverse disability communities). All work at Eviance embraces intersectional, human rights and reflexive approach. Some recent projects at Eviance include local Winnipeg project working with people with communication challenges to enhance positive interactions with First Responders; national projects for - ODI on intersectionality and disability; ESDC on National AccessAbilities Week; Elections Canada; and Transportation Canada on “shared mobility” – to name a few -; and an Independent Evaluation of programs for the International Disability Alliance. Eviance is a consumer-driven, community-based, and informed, organization that is working towards serving as a knowledge hub on disability issues with a vision of “realizing an inclusive, equitable and accessible society that is sustainable for all”.

Dr. Rachel Herron

Rachel Herron is an Associate Professor in the Department of Geography and Environment at Brandon University and a Canada Research Chair in Rural and Remote Mental Health. Her current research examines the vulnerability and complexity of care relationships, social inclusion and meaningful engagement for people living with dementia, and the diversity of lived experiences of rural mental health. 

Dr. Christine Kelly

Christine Kelly, PhD, is an Assistant Professor in Community Health Sciences and a research affiliate with the Centre on Aging at the University of Manitoba. Informed by feminist and critical disability scholarship, Dr. Kelly uses qualitative methods to explore the politics of care, aging, and Canadian disability movements. She is co-editor of the collection The Aging —Disability Nexus (2020), co-editor of Mobilizing Metaphor: Art, Culture and Disability Activism in Canada (2016), and author of Disability Politics and Care: The Challenge of Direct Funding (2016)all published by UBC Press. Dr. Kelly is recognized for her expertise on directly-funded home care in Canada and is presently leading a second CIHR-funded study on this topic.

Dian Day

Dian Day has a background in social justice research, health promotion and community development, most recently in the area of healthy and equitable aging. She holds a BA(Hon) from Acadia University (Sociology), an MA from Dalhousie (Sociology) and is a doctoral candidate (ABD) at Queen’s University (Cultural Studies). She is the Regional Coordinator (Antigonish, Pictou and Richmond Counties) for Community Links, a province-wide organization that supports the establishment of age-friendly, inclusive communities, and is also a member of the Pictou West Community Health Board. She is the author of two novels and is currently working on a third, as well as a non-fiction book about food and eating, and a children’s book about food security. Both of Dian’s parents developed dementia at the end of their lives, and she was her father’s primary caregiver for over a decade. 

Janet Kokocki

In my 30 plus year career I have worked in several hospitals and nursing home settings I am presently in my 13th year of employment with the Victorian Order of Nurses as Coordinator of the Adult Day Program Coordinator at Sydney, Nova Scotia. Our Day program offers, not only support to adults with challenges in memory, mobility or social opportunities but also support in the form of respite and education for their caregivers. Over my career, I have assisted in the offering of Caregiver Education Series Presentations as well as the Alzheimer and Related Dementia Care Course in conjunction with the Alzheimer Society of Nova Scotia.

It has always been an interest of mine to enhance the quality of life for those affected by Dementia and for that reason, I have been thrilled to be invited to be a member of this project.