Dementia Care in Community

Putting Dementia on the Map: A Nova Scotia Dementia Atlas

Funder: Change Lab Action Research Initiative

Community Lead: Alzheimer Society Nova Scotia
PI: Dr. Katie Aubrecht
Co-Is: Dr. Rachel Herron, Dr. Jacqueline Gahagan
RA: Sophie MacDonald, BA Health Student, StFX

Summary:

In Nova Scotia, dementia care is recognized as a growing public health concern; yet, provincial understanding of existing public and voluntary services and supports for community-dwelling people with dementia and their care partners is limited. This community-partnered mapping research project is developing an interactive service map using information collected from an environmental scan and organized using a conceptual framework informed by sociology of dementia and social geography. In visualizing existing service and supports the map has practical value as a navigation tool and a tool to assess dementia-friendliness.
 

Evidence to Assess the Impact of COVID-19 on Community-Based Dementia Care in Nova Scotia

Funder: Research Nova Scotia

PI: Dr. Katie Aubrecht
Lived Experience Partner: Trudy Flynn
Community Partners: Alzheimer Society Nova Scotia, Victoria Order of Nurses, Alzheimer Society Ireland, Eviance
Government Partner: Continuing Care - Research, Nova Scotia Health
Co-Is: Dr. Elaine Moody, Dr. Janice Keefe, Dr. Jacqueline Gahagan, Dr. Christine Kelly,  Dr. Barbara Hamilton-Hinch, Dr. OmiSoore Dryden, Dr. Meaghan Sim, Dr. Mary Jean Hande, Dr. Susan Hardie, Dr. Rachel Herron, Dr. Maria Pertl, Dr. Bernadette Rock,  Dr. Judah Goldstein, Dr. Kristin Hadfield.

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 their family/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.

Outcomes:

The project identified leading evidence and provincial resources, services and supports for people living with dementia and their caregivers could 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 highlighted 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 also supported 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.

Research Nova Scotia Researcher Spotlight: Watch here.

Media

Clark, P. (2021, October). "How the community based dementia care system is failing African Nova Scotians." CBC Information Morning.

Smith, E. (2021, October). "Dalhousie student documents experiences of Black caregivers struggling to find support." CBC News.

Gorman, M. (2020, June). "Nova Scotia researchers eye improvements to health-care system post COVID-19." CBC News.

Kingston, K. (2020, May). "St.F.X. Sociology Professor Katie Aubrecht studies program and supports for older adults living with dementia and how it has changed with COVID-19." 989XFM.

Publications

• Mason, S. & Aubrecht, K. (2023). Losing ground during COVID-19: Dementia caregivers' shifting perceptions of place. Journal of Canadian Studies, 57(1), 20-39. doi: 10.3138/jcs-2022-0027
• Bradbury, K., Moody, E., Aubrecht, K., Rothfus, M., & Sim, M. (2022). Equity in changes to dementia care in the community during the first wave of the COVID-19 pandemic in high income countries. Societies, 12(2), 30. http://doi.org./10.3390/soc12020030
• Bradbury, K., Moody, E., Aubrecht, K., & Sim, M. (2020). Dementia care under COVID-19 and infectious disease pandemic restrictions. Innovation in Aging, 4(Suppl. 1), 941-942. doi: 10.1093/geroni/igaa057.3448
• Aubrecht, K., Burke, R., Gahagan, J., Dowling, L., Kelly, C., Hande, M.J., Hardie, S., Keefe, J., & Rock, B. (2020). Health equity impacts of COVID-19 policies on dementia-relevant community services: A SGBA+ policy scan. Innovation in Aging(Suppl. 1), 96. doi: 10.1093/geroni/igaa057.3529

Presentations

• Lukindo, M., Hamilton-Hinch, B., Dryden, O., & Aubrecht, K. (November 10, 2021). Health equity implications of COVID-19 on dementia care in community for people of African descent. Poster presentation. Gerontological Society of America. Phoenix, Arizona. Online.
• Horne, J. & Aubrecht, K. (November 10, 2021). Walk with me: Storying rural dementia caregiving. Poster presentation. Gerontological Society of American. Phoenix, Arizona. Online.
• Hamilton-Hinch, B. & Lukindo, M. (October 18, 2021). Intersection of dementia, caregiving and supporting African Nova Scotians. Alzheimer Society of Nova Scotia Provincial Conference: Supporting dementia in all its diversity. Halifax, Nova Scotia. Online.
• Aubrecht, K., Mason, S., Flynn, T., Kelly, C., Hamilton-Hinch, B., Moody, E., Sim, M., Hadfield, K., Hande, M.J., & DePodesta, M. (October 22, 2021). "They say 'we're sorry', but sorry doesn't really help": Results from a COVID-19 rapid research study on dementia care in the community in Eastern Nova Scotia. Nova Scotia Health 2021 Health Research Conference - Promoting health through collaborative research and innovation in Nova Scotia, Eastern Zone. Cape Breton University, Sydney, Nova Scotia. Watch here.
• Horne, J. & Aubrecht, K. (October 21, 2021). Rural dementia caregiving: A community life story. Poster presentation. Canadian Association on Gerontology. Toronto, Ontario. Online.
• Aubrecht, K., Burke, R., DePodesta, M., Kelly, C., Gahagan, J., Hande, M.J., Hardie, S., Flynn, T., & Keefe, J. (October 22, 2021). Mapping the health equity impact of COVID-19 policy responses on dementia care in the community in Nova Scotia. Oral presentation. Atlantic Political Science Association, St. Francis Xavier University, Antigonish, Nova Scotia. 
• Aubrecht, K., Hamilton-Hinch, B., Hadfield, K., & Flynn, T. (July 9, 2021). Impact of COVID-19 responses on dementia care in the community from the perspectives of people living with dementia and their carers: An intersectional health equity analysis. Oral presentation. British Society of Gerontology Annual Conference. Lancaster University, Lancaster, UK. Online. 
• Burke, R. & Aubrecht, K. (July 7, 2021). Older adults in the community: A scan of news releases from the Nova Scotia government during the pandemic. Oral presentation. British Society of Gerontology Annual Conference. Lancaster University, Lancaster, UK. Online. 
• Aubrecht, K., Hamilton-Hinch, B., Mason, S., Kelly, C., Moody, E., Flynn, T., & Hadfield, K. (June 26, 2021). Impact of COVID-19 responses on care in community from people living with dementia and their family/friend carers: An intersectional health equity analysis. Oral presentation. Transforming Care Conference. Venice, Italy. Online. 
• Aubrecht, K. (June 21, 2021). Rethinking marginalization, vulnerability & resilience: Intersectionality in rapid COVID-19 research. Qualitative Analysis Conference. Brescia University College, London, Ontario. Online.
• Aubrecht, K. & Mason, S. (June 1, 2021). More than a setting: Understanding the significance of ‘community’ in community-based dementia care under COVID-19. Oral presentation. Canadian Sociological Association. Congress of the Humanities and Social Sciences. University of Alberta, Alberta. Online.

Project Partners

Victorian Order of Nurses (VON), Alzheimer Society Nova Scotia, Alzheimer Society Ireland, Eviance: Canadian Centre on Disability Studies Inc., NS Health Continuing Care

Project Funder

Nova Scotia COVID-19 Health Research Coalition

Project Advisors 

• Rosanne Burke 
• Dian Day 
• Michelle DePodesta 
• Celeste Gotell 
• Janet Kokocki 
• Sara Mackay 
• Sacha Nadeau 
• Sara O'Toole  

Students and Trainees

• Maya Lowe  

Primary Supervisor: Dr. Katie Aubrecht 
Program, Institution: BASc Health, St. Francis Xavier University  
Research interests: Race and service and support provision

• 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